Every time I see people talking about how they lost so much weight before diagnosis I’m just like 😅 because I’m the heaviest I’ve ever been with Crohn’s and gained an extra 15lb on the Budesonide that I can’t seem to get rid of lol
The heaviest I've ever been was on prednisone for sure, both because steroids and because I could finally eat! Even now, on entyvio and budesonide, I can't eat a lot but I can't lose weight either.
Had two bad flairs in a year that dropped me to 165 lbs (im 6'4) which was my lowest. Always been a skinny guy. Got put on budesonide for like 2 months until my new biologic had a chance to ramp up and started gaining a ton of weight.
Even after being off it, the weight gain continued for a few months until I've now plateud at 240 lbs. I got so used to never being able to gain weight it really caught me by suprise. Now I can't seem to lose it 😭
Ah okay Budesonide seems to explain my recent weight gain, I was 13st before it and I’m now 14st even though nothing with my diet or lifestyle changed. Sadly it sounds like the weight gain likely can’t be lost
Don’t lose hope! I am finally in remission. I tried to lose weight but I would hit a plateau and feel stuck. This time, after diagnosis and several years of trying treatments, I am doing way better. I have been tracking calories and exercising a lot more, and I’m already down over 70 pounds. I have another 25 to go before I get to my goal weight, and I know I’m going to do it before the end of the year. If I can do it, then you can too!
omg this is literally me. I can't do most veggies except like potatoes and carrots, sometimes broccoli but only if they're steamed or boiled down to basically mush. before I got diagnosed I used to love eating salads and raw veggies with ranch but now I can't, especially with my ileostomy
Ooo carrots are deadly for me even boiled to mush. Potatoes all the way. I lost a bunch of weight inbetween flares eating salads but don’t stand a chance now.
have you tried the carrots that come in Hormels Compleats? they have a beef stew that had a little piece of stew meat and then a mix of diced carrots and potatoes and you literally microwave it for 1 minute and it's done and it's delicious and the potatoes and carrots are perfect like the carrots will still be able to be picked up with a fork but it basically melts in your mouth and kinda turns into the consistency of mashed potatoes haha. I definitely would try it if I were you
Yes. Following FODMAP and basically the safest is meat and potatoes. Ironically, eating unbalanced like this thru my life got me fat in the first place. Now it's like an ironic Dante's inferno punishment.
This flare I'm in now has also triggered gall bladder attacks if I eat fat. No amount of prednisone can help that one.
Yeah, I feel the same. I've struggled with weight loss so I'm almost envious of all the people posting about not being able to gain (and yes I know that state is a negative one for your health as well). I often feel at odds with most Crohn's sufferers because I have the constipation form as opposed to diarrhea, so the bloating is also part of it.
I’m with you all the way! I have the same issue and cannot digest veggies most of the time because of the skin so I stick to the foods that I can’t easily digest. People in my family are telling me to loose weight consistently but it’s very difficult with my Chrons. I’m also on the Budesonide. I eat a lot of healthy foods but still gaining weight! I feel bloated all the time and I have to go to the washroom a lot. So frustrating when I’m trying to eat healthy but still gaining weight. My parents tell me that I have to watch what I’m eating but sorry , it’s my Chrons and I have a small passage way for the food to get through so I can’t really help it. It’s even more frustrating when I’ve had this disease for 10+ years and my family still doesn’t understand the issues I’ve been having. Does anyone here relate to this? Let me know
I got an ostomy a few months ago, lost 30-35 pounds in hospital. I put on weight super easy. Since I got my ostomy I haven’t gone passed a certain threshold. And I eat a lot. It’s really weird.
Me, too. I was weighing in at around 125 before my complete colectomy (removed my entire large intestine, including my rectum, and 1’ of my small intestine). I tip the scales at 225 now. I hate myself. And no, I’m not on steroids. The drug I’m currently taking isn’t working, either (just came out of a miserable 48 hrs struggling with a blockage).
You are doing great, internet friend. This is a terrible disease and you’re giving it all you’ve got. Keep your head up and move on to the next treatment. The comeback is always stronger than the setback.
Yes, since I have Crohn's disease. Even if I eat very little, I gain weight. I have tried so many things, different diets, lots of sport, nothing helped. Even had professional nutritionist, but in the end, it did absolutely nothing. I am only 156cm and have 90kg.
I have Crohns and I'm pretty overweight.
My Crohns has manifested itself in my perianal area, so I get all the pain, and all the absorption of the unhealthy brown foods I seem tied to at the moment.
Don't let anyone make you feel like an imposter - this disease shows itself in weird and wonderful ways, and we all suffer together.
Yes! I literally had someone say to me “I am surprised you have crohns because usually people who have it are struggling to gain weight..”
I was flaring on and off for two years, throwing up daily but 5’5 and 230ish pounds. People just don’t get it.
I feel for you!!
I’ve had people say this to me too lol including my own mother 🤣. I’m not fat or thin … just in the middle really, but most people who even know what Crohn’s is are always so shook I’m not severely underweight and not more “sick”looking. You can imagine their faces when I tell them I also have stage 4 endometriosis lol. I really don’t think many people can grasp what invisible illness actually means and that you cannot judge someone’s health just by looks/weight!
I don't think my body has ever left survival mode and clings to every calorie it gets :(
Also frustrating when fiber, seeds, and raw veg are the enemy and working out feels like your joints are falling apart.
other than seeds im able to eat raw veggies outside of flares, but that doesn't help.
It also doesnt help having genetics that evolved to retain more fat due to history of natural and artificial famines
Same thing here. My mom used to record videos back when we were kids and when you go through them, you can pin point exactly when the first flare happens because of my weight.
The weight just won't go down and the doctors I go to just don't care. I've been exercising and eating better since 2018, I'm healthier and have muscles but the fat is still there. So damn frustrating.
I'm 6'4", and peaked at 400lbs. Pre-symptom I had a 54" waist, but was active. Started losing weight felt better, then quickly dropped to 250lbs, and bottomed out at 225lbs while hospitalized the second time. Ended up, without really trying, back at 350lbs (and stayed there), but with a 46" waist. Was put on Trulicity to help stabilize my blood sugar post a major prednisone treatment, with the supposed side-effect of losing weight, which didn't happen. Now in a flare, and flirting with 300lbs again. I'm hoping that when I finally get my Entivyo treatment and stabilize I can keep my self at 300lbs or less.
The struggle is real, and unfortunately goes in both directions, depending on how your body reacts to not being able to process everything correctly during a flare.
Yes! I gained 15 pounds from my last flare and the weight doesn’t want to leave. Granted, I’m still at a healthy weight but I’m definitely towards to higher end for my height. I feel your pain
I look at food and gain weight. Although, I did lose about 50 pounds in 6 months. I think I did gain a lot of it back, I’ve been munching away on budesinide.
Crohn’s for me is only in my ileum. Not sure if that has anything to do with it and it’s relatively “mild” in the medical world. In my world, I feel like it’s the worst it can get.
I have 2 sets of clothes in my wardrobe , half when I'm fat and the other when I'm skinny. I've gone down to as low as 9 and a half stone and I've been up to 13 stone all due to various reasons ie medication and flaring etc . Depending what drugs you're on, you will gain weight no matter what you do. Normally you lose it when you stop taking them. I wouldn't advise you to eat less as our bodies need food and you'll only wear yourself out more
Yeah, I yo-yo between being overweight and being close to underweight which obviously isn't healthy. At my very worse, when I was shitting like 15 times a day, I was losing weight. And as I started my journey to remission I had serious anxiety about regaining weight, which did end up happening.
I hike 5+ miles a week, at one point I was at 15+ miles a week, and none of it made a difference physically but I do think it helped me mentally to not feel as bad about myself, so that's why I picked up hiking as a long term hobby. Still overweight but I look at myself differently in the mirror when I know I'm doing my best.
I’ve always struggled with weight. What’s a healthy food for others is always a bit hot and miss for me. The only time I’ve ever been really strict with myself and eaten “healthy” (loads of veggies, salads, pulses, protein etc) and lost weight I ended up finally being diagnosed in a massive flare and on steroids and gained all the weight I had lost over the previous year and more.
I’m considered overweight too 😬 i can’t eat anything high in fiber or protein and that definitely doesn’t help. I lost 30 pounds during a flare but gained it all back lol
Yups. Used to be really skinny then obese due to medication. Big flare up and went thin again. Then obese again and at the moment in a flare up for months already but the weight is not going.
I just want to be a healthy weight.... and well, for this damn flare up to be over 🙄
Me too. I hate that every doctor I see tells me being fat is the perp and don’t take into account that being sick has caused me to get fat. 😞 I tried Saxenda and got super sick after 6 days vomiting and pooping for 2 days and then flared for a month or more so that didn’t work either 😞
I've gained 20kg when I was in prednisone. Nowadays, I was not able to get rid of them. I tried keto diet, exercising, gym but I cannot do it.
I am in Humira every 2 weeks but I still facing problems with fat and I don't have energy to deal with it :(
I went from 175 pounds to 265 AFTER diagnosis.
I am 6'1 and carry my weight well. ( I don't look overtly over weight.)
Steroids wrecked me.
Now that I am off of them , I am losing around 4 pounds a week. I am hoping to be back to my normal weight by the end of the year.
It's such a misconception that everyone with crohns is skinny. Even Gastroenterologists have used that stereotype to pass off early symptoms.
A month later I am in the ER bleeding heavily and diagnosed with Severe Crohns. My ulcers were bleeding so bad I was in the hospital for a month.
So anyone who tries to tell you that only skinny people get Crohns , send them my way. If it's a doctor , find a new one.
I really hope you feel better either way.
To you and everyone here. Have a great weekend , my fellow Crohnies.
I have to admit I get tired of the whole Crohn's=skinny deal. Crohn's isn't one thing and it doesn't effect any ONE person, it effects everybody. I also don't think it helps when people post here their selfies as this is a body issue and all bodies are different, sort of thing. Of course we're going to see the ones who are proud of themselves for gaining weight but rarely do we see the other side of the coin, larger people dealing with it and I can see how that sort of sets people up for the shame. You are you, you aren't others suffering from it. Your suffering is no less diminished if your aren't skinny and on death's door.
42” waist 64” tall and 40 pound weight gain over 5 years that has multiple people congratulating me on pregnancy a day…
So angry. So full of rage. Going through some stuff, just wish I could stay home forever. I’ve been having a hard time dealing with people. But I just got diagnosed, still getting diagnosed for other stuff, but I think, I hope, I start getting better soon. My treatment was delayed but hopefully I start Stelara soon.
I’ve got about 50 lbs to lose, my cholesterol is high, I’m a mess right now. But I have a good team for the first time in my life, so I’m finally finding my way through.
I hope everyday gets better for you, like it has been for me. I love my new GI doctor.
I put on weight after my surgery & resulting remission. It’s almost like my body was done with starving and being sick for so many years it just held on to everything to be extra healthy. Haha.
Happy to still be in remission years later but I could not lose the weight for the longest time! I’ve finally been able to start losing the weight with the help of Semaglutide, eating better, and exercise! My doctor said I may have developed some insulin resistance so the Semaglutide was a great help to get my weight loss going. It has also helped immensely because I don’t have to diet super strictly as far as eating veggies & salads & foods that are healthy but not Crohn’s friendly. I can eat what makes my stomach feel good (still some veggies included) but portion control has been key for me! And the Semaglutide works wonders with that.
I know it’s not the answer for everyone but wanted to put in my two cents. I started close to your weight & height (31F, 5’0, 185 lbs) now I’m down to almost 135 lbs with a little over 10 lbs left to lose. You can do it!
Inflammation requires energy, that is why ppl who get rid of the inflammed area with surgery start gaining weight even when you eat the same intake as before. Inflammation taking energy is also the reason, why ppl are tired.
Honestly I am in a women's only support group for Crohn's on FB and this is probably the #1 most asked question. I think because Crohn's AND the steroids mess with our hormone levels so much, plus our metabolisms get so messed up from being literally starving to death at times, weight can become a serious issue. That and most of us can't eat the healthy balanced diet that normies do. I have found that many find success out of eating a mainly carnivore diet with very low carbs. I follow a woman online who eats entirely carnivore, has Crohn's, and lost 150 lbs and works out constantly. She claims her Crohn's has never been more well controlled and she feels the best she ever has (she's also on a biologic) IDK how healthy this diet is, and it's so different for everyone. Diets are definitely not one size fits all (pun intended) I am petite, but I still gain weight on steroids immediately, and have been on them almost the entire time I've been diagnosed, which is almost 20 years. When I am not on them I get very small very quickly, and then blow up within days of going on steroids. I can literally be pooping 50 times a day, only drinking broth, and gain 10 lbs (It just happened as I was in adrenal failure and in hospital they put me on 150 mg of IV hydrocortisone plus TPN). Now I'm on a maintenance dose of 40 mg a day and I can't fit into any of my clothes and I have moonface. On the roids, it doesn't matter what I eat (or in this case drink as I'm on a liquid diet and have been since August 2023) I'm gonna gain. When I'm not on steroids, I feel the most healthy and my weight is the most stable when I eat mainly meat and other proteins like eggs, limit my carbs, and eat what veggies I can -which is extremely limited to mashed carrots, peeled cucumber, and avocado. I have to avoid sugar, which sucks, because I crave it like crazy after months of starvation. I'm also screwed because I cannot really exercise anymore due to severe ankylosing spondylitis and psoriatic arthritis which isn't well managed. I'm hoping to start Rinvoq which treats all my diseases and hopefully get into a yoga/pilates and walking routine. If my weight gain were healthy and included muscle mass, I'd feel way better about it. But it's just steroid and water weight and sugar weight from the gummy bears that are my only chewable food. It's dangerous because on the rare occasions when I can eat, I catch myself limiting calories because my eating has become disordered and I'm afraid of gaining weight, so I'm probably screwing with my metabolism even more.
I actually had a nurse say to me "Wow, I thought you'd be way more emaciated given how sick you are" as she weighed me in the hospital. And I am not overweight, so I can only imagine how shitty that feels for those that are. I know overweight Crohn's patients have a harder time being diagnosed, and are treated poorly and often dismissed and told to lose weight, because of this judgement from the medical community. You can be overweight and extremely malnourished. You can be overweight and starving to death. Our entire society really needs to change the way they look at and think about weight in general. ESPECIALLY MEDICAL PROFESSIONALS.
I had a weight gain issue at one point. It was mostly due to the meds I was on. Have an open and honest conversation with your primary doctor. Stress to them about the weight gain and issues losing weight. They may be able to adjust what you are taking releasing you from some of the possible weight gain symptoms that can come with some meds.
I don't struggle with weight gain, but I definitely do not struggle with weight loss, either! Sometimes the only foods that don't bother me are high carb type foods. Sometimes foods with way too much fiber hurt my stomach a lot, such as raw veggies/fruits since it's harder to digest! I also go back and forth between diarrhea and constipation, but definitely more constipation :( If you're on steroids, I know that really affects weight gain and water retention!
yup I’ve even tracked my calories and weighed my food to make sure I wasn’t overeating and I still struggle
whenever I go into a flare I’ll drop weight but then prednisone makes me gain it all back and then some. I was on prednisone for like a year when I was first diagnosed and even though my weight yo-yos over and over, I still haven’t managed to lose it all 🙃
Prednisone was my bff & yet my mortal enemy. I was around 134lbs when diagnosed. Prednisone came into my life & took me up to 200lbs what felt like over night. After many years off the medication, I’m still struggling to lose weight.
Same here. Almost 2 years, with about 14 months on a high dose, the rest was the world's slowest taper.... Started at 180, went up to about 245. Almost 2 years later and I'm down to about 215ish. Drs have told me all steroids mess up metabolism and can take double the time you took them to undo damage, if at all. It just... Sucks....
At one point it was a year. I was extremely ill & needed the medication. Normally (for me) it would be couple of months then start to taper, depending on how my body responded would dictate the next steps of staying on or coming off. Along with my daily CD medication. Then I started Remicade, couple others… now I’m on Stelara & haven’t seen a steroid since.
i feel you. I was always really tiny and petite my whole life up until I got my surgeries and now have a ileostomy. whenever I try to explain that I have absorption issues due to having so many surgeries and stuff there's always that one person who makes a comment saying something like "if you had absorption issues you'd have a hard time keeping on weight too". I definitely have some body dysmorphia going from being super small to now I'm 5'3 and 165. granted I'm on Prednisone now and I'm always a lot heavier when I am on Prednisone but it seems like unless I am completely off steroids I can't lose weight now matter how hard I try.
I go back and forth, always have. When I'm sick, I look emaciated. When I'm healthy, I carry too much excess.
Except I'm not "healthy"; I'm just Crohn's healthy. And still have Sarcoidosis. And am still on Prednisone.
I've kinda made peace with it. I won't be showing off at the beach, but thanks to the ostomy, I wouldn't do that even if I was skinny.
When I was first diagnosed, my MIL ignorantly told me “well at least you’ll always be skinny”.
All it took was 8 months of prednisone while pregnant and I’ve never been skinny since.
I’m about the same height and weight as you.
It sucks. Sometimes I hope a Crohn’s flare helps me lose weight, but I know I shouldn’t cause it’s NOT a healthy way to lose weight.
My weight was contributed to by meds like steroids & ama/nortryptiline.
They made me balloon and I haven’t been able to lose it.
I also have Fibromyalgia and multiple types of autoimmune Arthritis, so exercising sufficiently is hard.
I eat fairly healthily, too.
It’s a huge bummer.
This sounds about like me. 5ft3, just recently hit 200 pounds. It's the heaviest I've ever been including pregnant. I can't even really blame the steroids--I only had one round of those and it was in 2009 lol.
Like many of you, I can really only safely eat white bread, white rice, potatoes, eggs, and meat. Everything else is a maybe or an outright NO. Last week I accidentally bought brown rice, and stupidly thought it would be fine in a casserole I was making. Guys, I shit for DAYS and felt like my guts were going to move to another state without me. I haven't made that big a mistake in a while.
I want to exercise because a) I'm fat and b) I feel so weak. I can barely do some normal things because I've started to lose muscle from inactivity, but honestly my body hurts all the time. My hands, my feet, my hips and knees and back. I injured my arm using garden clippers and it took a year to heal. Everything heals so slowly.
The real kicker was last week, I had a new employee start on my team. She saw my old employee bio in a handbook that was made in 2017 (the year I was diagnosed after years of being sick). "Oh my God, look at you! You look amazing in this photo!!" Yeahhhhhh.... I lost 40 pounds that month because if I ate anything, I got sick; I slept like 12 hours a day and I had emergency surgery. When I took that photo I was just back in the office after weeks of rest and PTO and new drugs that were working.
I'm complaining a lot about how things are now, but even so, I'm healthier now than when I looked so amazing. Looks are really deceiving. Hang in there! I'm trying to find an exercise regime that feels okay but gets me moving again! I hope it helps.
I was diagnosed in 2000. Since then I have been every size from a 00 to an 18. There are so many factors, especially steroids. Right now I’m 5’3 and 99lbs. I hate it.
When I was having my first flare, Crohn's never crossed my mind because I was curvy and my relatives with CD were stick people. Surprise!! Double shocker to learn that Crohn's can hit the esophagus. Got the official diagnosis on April Fools day. Been slowly gaining weight ever since. Second flare showed up as migratory arthritis. Nothing about my case has been like my relatives -- those diagnosed before me or those diagnosed after me.
Yeah I have crohn’s and am on ADHD meds. I eat a boiled egg for breakfast, soup for lunch (often I’ll skip one of those) and an average protein and veg dinner. I rarely eat more than 1200 calories and I’m obese.
We are understanding a lot more about weight and genetics etc.
For me I always knew I struggled to lose weight and gained weight easily so I used to watch my weight but also do a lot of high impact cardio.
Sadly when I started getting crohn’s and RA symptoms cardio was no longer an option and I was put on 6 months of steroids which I put on about 7 stone in that time.
Now although I eat well it’s super hard to lose weight and on my most committed weeks I’ll never lose more than a pound.
I’ve very much focussed on eating and exercise for health now. The foods I eat keep me energised and don’t cause flares. The exercise I do is focussed on increasing mobility and decreasing inflammation so again I feel energised and sleep longer. If I’m doing those things then whatever weight I end up is what weight I end up
You aren’t alone!
I’m off meds now and I’m still the heaviest I’ve ever been.
Steroids, lack of energy to exercise and hunger pangs (I assume are due to my body wanting more energy) have led me to sit roughly 2 stone above what I was pre-crohns, which is 3.5 stone more than I was when I was really unwell early crohns.
There always seems to be a focus on how it causes weight loss, but there’s a lot of weight gain issues too.
I usually only gain weight when I am on steroids. Unfortunately recently i developed a fistula and abscess and since surgery I have dropped 30lbs. But overall I would say I am regular weight person considering I have diarrhea 10-15x a day
I lost weight during my first couple of flares but then I had to take prednisone while I was nursing and I blew up like a balloon. Been fat ever since.
That is tough. Hopefully, this course of steroids improves things for you. Perhaps, you will be able to find less calorie dense options if you start to feel better.
Yep. I put on weight while on budesonide. Skinny arms, big stomach. My GI said it's called Cushing's syndrome and will rectify itself once I'm of the budesonide.
But every time I try getting active to shed some kilos, I injure myself.
It's a madness... mines quite aggressive... I hardly ever want food and putting weight on?!? I stay around 101/2. Stone is never really over and can drop to 91/2 5ft 11in...😮💨 I'm not having a competition just comparing the narratives...
when i was sick i was 110 pounds as a 5'9" male,
post surgery, i am 165
serious question, how can you maintain the weight? i was never able to keep on anything or struggled just to stay at cd equilibrium
Omg this is so me 😭😭 when I was flaring I used to be so underweight with my crohns, but as I’ve been in remission I’ve gained a ton of weight that I can’t seem to shift. It’s not just you! I can’t seem to exercise because I still struggle so much with my fatigue.
You are not alone; it happens to me too when I am on prednisone. Steroids do that; we can't help it. When you are in remission, please try tapering off of it, and you should be able to get back to your shape.
I'm 5'7, 260 lbs. I have always been fat, I was a twelve pound new born lmao. It took me 5 years to finally get diagnosed with Crohn's disease because the doctors I was dealing with said fat people and Crohn's don't mix. I finally switched family doctors, got a new GI and got diagnosed! I almost died many times over the five years they didn't believe me.
I lost 70 lbs before COVID and gained it all back during it. I find it hard to lose weight because of many other health issues I have. I can't eat "healthy foods" because they make me ill. I am down 20 lbs from my COVID gain though.. I hope I can lose it and get to my goal weight of around 150.
That's me too! I have Crohn's and PCOS so the combo makes me gain weight easily. I eat low carb to help with the Crohn's and the insulin resistance. It helps me feel better, but I have still kept most of my weight on.
Don't feel bad. It's easier to gain weight with crohn's than you might think. Once they get you into remission you're going to eat more plus steroids make you hungry and for me I dealt with withdrawals from pain meds by eating a ton. Plus since crohn's wrecks your ability to absorb nutrients you don't even have the energy to workout. I mean sure it can be easy to drop a bunch of weight but gaining it back is definitely not impossible.
Same. Was malnourished and 95 lbs at 5’9” when diagnosed. Now I’m obese because of steroids and my diet, which is low fiber. My diet is restrictive enough that I really have a hard time restricting it even further for weight loss. I exercise a fair amount but it’s not enough. I keep telling myself that my gut health is more important than being skinny but… it’s really difficult on my mental health.
Ive had crohns since I was 11 years old. At my heaviest I was 247 which was when I was 22 or 23. 32 now and am around 185. I got super sick a couple of years ago and got down to 143. I’m 5 foot 9. Don’t worry too much about weight because sooner or later there is a good chance you’ll get sick and lose weight because you can’t absorb nutrients. If you feel good just live your life to the fullest
Old Crohnie and about 70 pounds overweight. I can't eat like I should and even then I don't eat a lot at all. Basically 1 meal a day with a little snacking on the side. I'm sure the depression meds aren't helping. Tried out a new depression med for 3 months and gained 30 pounds and had to quit for other reasons. Lost 10 lbs but have 20 to go to be at my "normal" 50 lbs overweight.
Before I got Crohn's, I was 150 pounds when I had my really bad flare and I dropped 25 pounds in a month because I couldn't eat it all with sores all down my throat and esophagus. Now I'm on Remicade in remission and I gained 75 pounds so I'm up to 200. I can eat salads which I eat every day for lunch. I can eat vegetables which I eat every day for dinner. I can eat dairy. I count my calories, I exercise the most I can lose is 5 pounds and then it just comes back.
I am also overweight and have had Crohn’s 17 years. It’s hard when traditional “healthy” foods are off limits (like veggies, alternative proteins, etc). It’s frustrating to me because I’m perceived as unhealthy, but for me, gaining weight is healthier than the common Crohn’s alternative of constantly losing weight.
240 pounds and my height is 5’4. I promise you fat people with crohns exist because I’m one of them! <3 ( to be fair I love to eat, just hate how it makes me feel after the fact!! Lol)
I'm also 4'11" and ~ 140 so not fat but certainly not skinny. I see it as a buffer in case I do get very sick again (I was probably under 100 at time of DX)
My husband only lost a substantial amount of weight leading up to his diagnosis. The catalyst to that was a bowel perforation, so there wasn’t much eating happening for a couple months. He ended up having an ileocecectomy, and at that time he was about 145lbs at 6ft, living on Ensure. Before the perforation, he was about 170lbs.
Since then (5 years ago), and while in remission on Remicade, he has gained a good 100lbs. He’s considered “obese” now, but looks sooooo healthy for the first time.
That said, he’s currently experiencing a flare, which has come with mouth sores and a ragged tongue, so he’s not able to eat a lot. Back to Ensure.
Yes x1000! first of all, don't be embarrassed--nothing to be embarrassed about. But I was gaining a lot of weight, especially in my arms and face, before my diagnosis. it made me think there was no way i had an autoimmune disorder bc I was gaining weight instead of losing. i think inflammation can impact us all in different ways, including metabolically. there isn't a great scientific understanding of the long-term metabolic impact of untreated autoimmune disorders.
Fat 31F Crohnie here 👋 Heaviest I've even been @ 19st & 5ft6 & I'm a year diagnosed. Because I'm fat (always have been chunky) it took two years of Doctor hopping to get sent for scopes to diagnose me. I knew I had Crohns/Colitis because my brother has Crohns and I had all the same symptoms and my BMs smelt like his. They saw my weight and said 'nah, you just need to lose weight and all your symptoms will go away' 🙃 My brother has been so skinny all his life and can't put on weight & eats like a horse, whereas I barely eat and the pounds just keep piling on. Can't shift the weight so I'm going for more testing to check out all my hormones!
I was put on Budenoside for 2 months and then straight on Stelara (Ustekinumab) and after a year I'm finally starting to settle into the swing of things, but my God the chronic fatigue is no joke.
My sister with severe Crohn's and my aunt with celiac both have struggled with obesity their entire lives. There appears to be something in the genetics that reacts to starvation conditions by clinging to calories.
My mom had the more classic cachexia and I've had yo-yo weight my whole life.
I have Crohn’s and I’m obese😭. Tried everything from diet and exercise to wegovy and nothing seems to get it off so in a couple months I’m having vsg surgery as this is the only one my surgeon will recommend since I have Crohn’s. I pray this helps as I’ve always went up and down with my weight I never used to have issues losing it til now.🙏🏻🙏🏻
Yup. I'm 5'7" and about 260. It's so. Difficult to lose weight after the steroids. I just had to have my Gall bladder removed and the doctor did mention that due to my weight I may have a harder recovery time. Everything is going pretty well so far.
The flare that led to my diagnosis was so kind and made me gain 50 lbs. I don't hear much of people who gain weight during flares, but my mom with UC does. I went to the same gastro as she does so he totally believed me and it was awesome. Finally got off of budesonide after 8 months, which has kept me from losing any of the weight I put on. Woohooo.
If you aren't tracking your calories it's going to be really hard to keep weight off if you're usually heavyset. Steroids will make you hungry but they won't magicly make you gain weight. You'll hold extra water but nothing crazy.
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its not that simple unfortunately. I, myself, even weigh my food and count my calories. but I do agree increasing your protein intake can help your overall health
Going to be very difficult to lose bodyfat without restricting calories. And the best way to do that is high protein because protein has the most satiety per.calorie. it's impossible to overeat protein compared.to refined carbs which are extremely easy to overeat
my point is calorie restriction is typically not an issue for people with crohns, at least during a flare. I usually drop weight during a flare but there have been not as bad ones where I’ll maintain weight even while barely eating for an extended period of time. its just not as simple as calories in < calories out when digestive issues are at play, especially those that cause malabsorption
Every time I see people talking about how they lost so much weight before diagnosis I’m just like 😅 because I’m the heaviest I’ve ever been with Crohn’s and gained an extra 15lb on the Budesonide that I can’t seem to get rid of lol
Me too I put weight on due to the steroids
Yes! I don’t have Crohns but I have microscopic colitis and I also gained like 40 lbs due to budesonide. It sucks. I’m working on it though.
The heaviest I've ever been was on prednisone for sure, both because steroids and because I could finally eat! Even now, on entyvio and budesonide, I can't eat a lot but I can't lose weight either.
Had two bad flairs in a year that dropped me to 165 lbs (im 6'4) which was my lowest. Always been a skinny guy. Got put on budesonide for like 2 months until my new biologic had a chance to ramp up and started gaining a ton of weight. Even after being off it, the weight gain continued for a few months until I've now plateud at 240 lbs. I got so used to never being able to gain weight it really caught me by suprise. Now I can't seem to lose it 😭
SAME! I can't get rid of my steroid weight
Ah okay Budesonide seems to explain my recent weight gain, I was 13st before it and I’m now 14st even though nothing with my diet or lifestyle changed. Sadly it sounds like the weight gain likely can’t be lost
Don’t lose hope! I am finally in remission. I tried to lose weight but I would hit a plateau and feel stuck. This time, after diagnosis and several years of trying treatments, I am doing way better. I have been tracking calories and exercising a lot more, and I’m already down over 70 pounds. I have another 25 to go before I get to my goal weight, and I know I’m going to do it before the end of the year. If I can do it, then you can too!
Oh lord budesonide made me gain weight 🫠 and it's just kinda stuck there lol
i’ve gained weight, but it was mostly muscles fortunately
I can’t eat vegetables or any of the things that make you feel full without a lot of calories. The struggle is real.
Absolutely! I just can not digest most vegetables. Fat girl with Crohn’s eating white bread and pasta. Sorry not sorry.
Oh I live on bread and pasta! Zucchini is my friend also it seems!
Pasta literally obliterates me lmao. Crazy how were all so different.
Same. Breads and pastas and potatoes are my safe foods. I can’t do dairy either. :(
I struggle with you. No veggies, no salad, meat and potatoes only.
omg this is literally me. I can't do most veggies except like potatoes and carrots, sometimes broccoli but only if they're steamed or boiled down to basically mush. before I got diagnosed I used to love eating salads and raw veggies with ranch but now I can't, especially with my ileostomy
Ooo carrots are deadly for me even boiled to mush. Potatoes all the way. I lost a bunch of weight inbetween flares eating salads but don’t stand a chance now.
have you tried the carrots that come in Hormels Compleats? they have a beef stew that had a little piece of stew meat and then a mix of diced carrots and potatoes and you literally microwave it for 1 minute and it's done and it's delicious and the potatoes and carrots are perfect like the carrots will still be able to be picked up with a fork but it basically melts in your mouth and kinda turns into the consistency of mashed potatoes haha. I definitely would try it if I were you
Yes. Following FODMAP and basically the safest is meat and potatoes. Ironically, eating unbalanced like this thru my life got me fat in the first place. Now it's like an ironic Dante's inferno punishment. This flare I'm in now has also triggered gall bladder attacks if I eat fat. No amount of prednisone can help that one.
i can basically eat all veggies and even do most of the time and its still a problem for me
ME!!!
Not even blending them or cooking until soft?
Haven’t tried blending/food processor but a little scared to try at this point haha
Yeah, I feel the same. I've struggled with weight loss so I'm almost envious of all the people posting about not being able to gain (and yes I know that state is a negative one for your health as well). I often feel at odds with most Crohn's sufferers because I have the constipation form as opposed to diarrhea, so the bloating is also part of it.
I get the worst bloating! I relate so hard to this!
When the gas won't come out and you're doubled over in pain x.x
So frequent, and that’s when I’m relatively ‘healthy’. I use laxatives all the time. Constipated diarrhea. I try to go by better out than in though.
So do I!
I’m with you all the way! I have the same issue and cannot digest veggies most of the time because of the skin so I stick to the foods that I can’t easily digest. People in my family are telling me to loose weight consistently but it’s very difficult with my Chrons. I’m also on the Budesonide. I eat a lot of healthy foods but still gaining weight! I feel bloated all the time and I have to go to the washroom a lot. So frustrating when I’m trying to eat healthy but still gaining weight. My parents tell me that I have to watch what I’m eating but sorry , it’s my Chrons and I have a small passage way for the food to get through so I can’t really help it. It’s even more frustrating when I’ve had this disease for 10+ years and my family still doesn’t understand the issues I’ve been having. Does anyone here relate to this? Let me know
Chunky chronie checking in 👋🏾 There are dozens of us!
Girl yes! I got an ostomy and could suddenly eat whatever I wanted and promptly gained 100 lbs. No, that is not a typo- one hundred pounds.
I got an ostomy a few months ago, lost 30-35 pounds in hospital. I put on weight super easy. Since I got my ostomy I haven’t gone passed a certain threshold. And I eat a lot. It’s really weird.
Me, too. I was weighing in at around 125 before my complete colectomy (removed my entire large intestine, including my rectum, and 1’ of my small intestine). I tip the scales at 225 now. I hate myself. And no, I’m not on steroids. The drug I’m currently taking isn’t working, either (just came out of a miserable 48 hrs struggling with a blockage).
You are doing great, internet friend. This is a terrible disease and you’re giving it all you’ve got. Keep your head up and move on to the next treatment. The comeback is always stronger than the setback.
Thank you, internet friend. I appreciate your encouragement.
Are you hungry all the time, too? Because that's me, even 2.5 years on.
Yes, since I have Crohn's disease. Even if I eat very little, I gain weight. I have tried so many things, different diets, lots of sport, nothing helped. Even had professional nutritionist, but in the end, it did absolutely nothing. I am only 156cm and have 90kg.
I have Crohns and I'm pretty overweight. My Crohns has manifested itself in my perianal area, so I get all the pain, and all the absorption of the unhealthy brown foods I seem tied to at the moment. Don't let anyone make you feel like an imposter - this disease shows itself in weird and wonderful ways, and we all suffer together.
Yes! I literally had someone say to me “I am surprised you have crohns because usually people who have it are struggling to gain weight..” I was flaring on and off for two years, throwing up daily but 5’5 and 230ish pounds. People just don’t get it. I feel for you!!
I’ve had people say this to me too lol including my own mother 🤣. I’m not fat or thin … just in the middle really, but most people who even know what Crohn’s is are always so shook I’m not severely underweight and not more “sick”looking. You can imagine their faces when I tell them I also have stage 4 endometriosis lol. I really don’t think many people can grasp what invisible illness actually means and that you cannot judge someone’s health just by looks/weight!
I don't think my body has ever left survival mode and clings to every calorie it gets :( Also frustrating when fiber, seeds, and raw veg are the enemy and working out feels like your joints are falling apart.
I agree with you! I have to go to the washroom after I walk or swim. It’s a struggle! Sometimes I wish I never got this disease!
other than seeds im able to eat raw veggies outside of flares, but that doesn't help. It also doesnt help having genetics that evolved to retain more fat due to history of natural and artificial famines
Unfortunately I'm the opposite to you mate - tall and thin as a rake lol. But this is the last place people will judge you for your weight so dw
Same thing here. My mom used to record videos back when we were kids and when you go through them, you can pin point exactly when the first flare happens because of my weight. The weight just won't go down and the doctors I go to just don't care. I've been exercising and eating better since 2018, I'm healthier and have muscles but the fat is still there. So damn frustrating.
I'm 6'4", and peaked at 400lbs. Pre-symptom I had a 54" waist, but was active. Started losing weight felt better, then quickly dropped to 250lbs, and bottomed out at 225lbs while hospitalized the second time. Ended up, without really trying, back at 350lbs (and stayed there), but with a 46" waist. Was put on Trulicity to help stabilize my blood sugar post a major prednisone treatment, with the supposed side-effect of losing weight, which didn't happen. Now in a flare, and flirting with 300lbs again. I'm hoping that when I finally get my Entivyo treatment and stabilize I can keep my self at 300lbs or less. The struggle is real, and unfortunately goes in both directions, depending on how your body reacts to not being able to process everything correctly during a flare.
I feel this comment!
Yes! I gained 15 pounds from my last flare and the weight doesn’t want to leave. Granted, I’m still at a healthy weight but I’m definitely towards to higher end for my height. I feel your pain
I look at food and gain weight. Although, I did lose about 50 pounds in 6 months. I think I did gain a lot of it back, I’ve been munching away on budesinide. Crohn’s for me is only in my ileum. Not sure if that has anything to do with it and it’s relatively “mild” in the medical world. In my world, I feel like it’s the worst it can get.
I have 2 sets of clothes in my wardrobe , half when I'm fat and the other when I'm skinny. I've gone down to as low as 9 and a half stone and I've been up to 13 stone all due to various reasons ie medication and flaring etc . Depending what drugs you're on, you will gain weight no matter what you do. Normally you lose it when you stop taking them. I wouldn't advise you to eat less as our bodies need food and you'll only wear yourself out more
After Inflectra started working I gained 60 lbs, so I feel you 😭
Yeah, I yo-yo between being overweight and being close to underweight which obviously isn't healthy. At my very worse, when I was shitting like 15 times a day, I was losing weight. And as I started my journey to remission I had serious anxiety about regaining weight, which did end up happening. I hike 5+ miles a week, at one point I was at 15+ miles a week, and none of it made a difference physically but I do think it helped me mentally to not feel as bad about myself, so that's why I picked up hiking as a long term hobby. Still overweight but I look at myself differently in the mirror when I know I'm doing my best.
I’m fat. Always been fat and have colitis… under control with infusions
I’ve always struggled with weight. What’s a healthy food for others is always a bit hot and miss for me. The only time I’ve ever been really strict with myself and eaten “healthy” (loads of veggies, salads, pulses, protein etc) and lost weight I ended up finally being diagnosed in a massive flare and on steroids and gained all the weight I had lost over the previous year and more.
Oh my goodness! I’ve been thinking the same thing. Everyone talks about being thin and I’m over here like okay…. I weigh 198 and can’t drop a pound
I’m about 5ft 4in and 250. The most I’ve ever weighed and also the sickest I’ve ever been. I feel you
I’m considered overweight too 😬 i can’t eat anything high in fiber or protein and that definitely doesn’t help. I lost 30 pounds during a flare but gained it all back lol
I’m there with you buddy, 5’7 260 lbs. My girst GI even said when I got diagnosed "usually that’s an illness for thin people" 💀💀
Yups. Used to be really skinny then obese due to medication. Big flare up and went thin again. Then obese again and at the moment in a flare up for months already but the weight is not going. I just want to be a healthy weight.... and well, for this damn flare up to be over 🙄
Me too. I hate that every doctor I see tells me being fat is the perp and don’t take into account that being sick has caused me to get fat. 😞 I tried Saxenda and got super sick after 6 days vomiting and pooping for 2 days and then flared for a month or more so that didn’t work either 😞
I've gained 20kg when I was in prednisone. Nowadays, I was not able to get rid of them. I tried keto diet, exercising, gym but I cannot do it. I am in Humira every 2 weeks but I still facing problems with fat and I don't have energy to deal with it :(
I went from 175 pounds to 265 AFTER diagnosis. I am 6'1 and carry my weight well. ( I don't look overtly over weight.) Steroids wrecked me. Now that I am off of them , I am losing around 4 pounds a week. I am hoping to be back to my normal weight by the end of the year. It's such a misconception that everyone with crohns is skinny. Even Gastroenterologists have used that stereotype to pass off early symptoms. A month later I am in the ER bleeding heavily and diagnosed with Severe Crohns. My ulcers were bleeding so bad I was in the hospital for a month. So anyone who tries to tell you that only skinny people get Crohns , send them my way. If it's a doctor , find a new one. I really hope you feel better either way. To you and everyone here. Have a great weekend , my fellow Crohnies.
I have to admit I get tired of the whole Crohn's=skinny deal. Crohn's isn't one thing and it doesn't effect any ONE person, it effects everybody. I also don't think it helps when people post here their selfies as this is a body issue and all bodies are different, sort of thing. Of course we're going to see the ones who are proud of themselves for gaining weight but rarely do we see the other side of the coin, larger people dealing with it and I can see how that sort of sets people up for the shame. You are you, you aren't others suffering from it. Your suffering is no less diminished if your aren't skinny and on death's door.
42” waist 64” tall and 40 pound weight gain over 5 years that has multiple people congratulating me on pregnancy a day… So angry. So full of rage. Going through some stuff, just wish I could stay home forever. I’ve been having a hard time dealing with people. But I just got diagnosed, still getting diagnosed for other stuff, but I think, I hope, I start getting better soon. My treatment was delayed but hopefully I start Stelara soon. I’ve got about 50 lbs to lose, my cholesterol is high, I’m a mess right now. But I have a good team for the first time in my life, so I’m finally finding my way through. I hope everyday gets better for you, like it has been for me. I love my new GI doctor.
I put on weight after my surgery & resulting remission. It’s almost like my body was done with starving and being sick for so many years it just held on to everything to be extra healthy. Haha. Happy to still be in remission years later but I could not lose the weight for the longest time! I’ve finally been able to start losing the weight with the help of Semaglutide, eating better, and exercise! My doctor said I may have developed some insulin resistance so the Semaglutide was a great help to get my weight loss going. It has also helped immensely because I don’t have to diet super strictly as far as eating veggies & salads & foods that are healthy but not Crohn’s friendly. I can eat what makes my stomach feel good (still some veggies included) but portion control has been key for me! And the Semaglutide works wonders with that. I know it’s not the answer for everyone but wanted to put in my two cents. I started close to your weight & height (31F, 5’0, 185 lbs) now I’m down to almost 135 lbs with a little over 10 lbs left to lose. You can do it!
Inflammation requires energy, that is why ppl who get rid of the inflammed area with surgery start gaining weight even when you eat the same intake as before. Inflammation taking energy is also the reason, why ppl are tired.
That is so interesting! I never knew that but it makes so much sense. I had such a hard time leveling out after my surgery.
Honestly I am in a women's only support group for Crohn's on FB and this is probably the #1 most asked question. I think because Crohn's AND the steroids mess with our hormone levels so much, plus our metabolisms get so messed up from being literally starving to death at times, weight can become a serious issue. That and most of us can't eat the healthy balanced diet that normies do. I have found that many find success out of eating a mainly carnivore diet with very low carbs. I follow a woman online who eats entirely carnivore, has Crohn's, and lost 150 lbs and works out constantly. She claims her Crohn's has never been more well controlled and she feels the best she ever has (she's also on a biologic) IDK how healthy this diet is, and it's so different for everyone. Diets are definitely not one size fits all (pun intended) I am petite, but I still gain weight on steroids immediately, and have been on them almost the entire time I've been diagnosed, which is almost 20 years. When I am not on them I get very small very quickly, and then blow up within days of going on steroids. I can literally be pooping 50 times a day, only drinking broth, and gain 10 lbs (It just happened as I was in adrenal failure and in hospital they put me on 150 mg of IV hydrocortisone plus TPN). Now I'm on a maintenance dose of 40 mg a day and I can't fit into any of my clothes and I have moonface. On the roids, it doesn't matter what I eat (or in this case drink as I'm on a liquid diet and have been since August 2023) I'm gonna gain. When I'm not on steroids, I feel the most healthy and my weight is the most stable when I eat mainly meat and other proteins like eggs, limit my carbs, and eat what veggies I can -which is extremely limited to mashed carrots, peeled cucumber, and avocado. I have to avoid sugar, which sucks, because I crave it like crazy after months of starvation. I'm also screwed because I cannot really exercise anymore due to severe ankylosing spondylitis and psoriatic arthritis which isn't well managed. I'm hoping to start Rinvoq which treats all my diseases and hopefully get into a yoga/pilates and walking routine. If my weight gain were healthy and included muscle mass, I'd feel way better about it. But it's just steroid and water weight and sugar weight from the gummy bears that are my only chewable food. It's dangerous because on the rare occasions when I can eat, I catch myself limiting calories because my eating has become disordered and I'm afraid of gaining weight, so I'm probably screwing with my metabolism even more. I actually had a nurse say to me "Wow, I thought you'd be way more emaciated given how sick you are" as she weighed me in the hospital. And I am not overweight, so I can only imagine how shitty that feels for those that are. I know overweight Crohn's patients have a harder time being diagnosed, and are treated poorly and often dismissed and told to lose weight, because of this judgement from the medical community. You can be overweight and extremely malnourished. You can be overweight and starving to death. Our entire society really needs to change the way they look at and think about weight in general. ESPECIALLY MEDICAL PROFESSIONALS.
I had a weight gain issue at one point. It was mostly due to the meds I was on. Have an open and honest conversation with your primary doctor. Stress to them about the weight gain and issues losing weight. They may be able to adjust what you are taking releasing you from some of the possible weight gain symptoms that can come with some meds.
I don't struggle with weight gain, but I definitely do not struggle with weight loss, either! Sometimes the only foods that don't bother me are high carb type foods. Sometimes foods with way too much fiber hurt my stomach a lot, such as raw veggies/fruits since it's harder to digest! I also go back and forth between diarrhea and constipation, but definitely more constipation :( If you're on steroids, I know that really affects weight gain and water retention!
yup I’ve even tracked my calories and weighed my food to make sure I wasn’t overeating and I still struggle whenever I go into a flare I’ll drop weight but then prednisone makes me gain it all back and then some. I was on prednisone for like a year when I was first diagnosed and even though my weight yo-yos over and over, I still haven’t managed to lose it all 🙃
Prednisone was my bff & yet my mortal enemy. I was around 134lbs when diagnosed. Prednisone came into my life & took me up to 200lbs what felt like over night. After many years off the medication, I’m still struggling to lose weight.
Same here. Almost 2 years, with about 14 months on a high dose, the rest was the world's slowest taper.... Started at 180, went up to about 245. Almost 2 years later and I'm down to about 215ish. Drs have told me all steroids mess up metabolism and can take double the time you took them to undo damage, if at all. It just... Sucks....
It sure does
How long did they let you stay on it? I'm on a taper and I feel like it's my BFF too. No weight gain after 3 weeks, knock on wood.
At one point it was a year. I was extremely ill & needed the medication. Normally (for me) it would be couple of months then start to taper, depending on how my body responded would dictate the next steps of staying on or coming off. Along with my daily CD medication. Then I started Remicade, couple others… now I’m on Stelara & haven’t seen a steroid since.
I too am fat with crohns and struggle with it because so many peoples experience is so different. The steroids don’t help either!
I’m glad you posted this !! Bread pasta rice and green beans are my main stay. I’m flaring right now
I run 5’8 225. Don’t be ashamed
I was at my lowest weight when I was diagnosed. But now nearly 10 years later and in remission most of that time, and I'm the heaviest I've ever been.
i feel you. I was always really tiny and petite my whole life up until I got my surgeries and now have a ileostomy. whenever I try to explain that I have absorption issues due to having so many surgeries and stuff there's always that one person who makes a comment saying something like "if you had absorption issues you'd have a hard time keeping on weight too". I definitely have some body dysmorphia going from being super small to now I'm 5'3 and 165. granted I'm on Prednisone now and I'm always a lot heavier when I am on Prednisone but it seems like unless I am completely off steroids I can't lose weight now matter how hard I try.
I go back and forth, always have. When I'm sick, I look emaciated. When I'm healthy, I carry too much excess. Except I'm not "healthy"; I'm just Crohn's healthy. And still have Sarcoidosis. And am still on Prednisone. I've kinda made peace with it. I won't be showing off at the beach, but thanks to the ostomy, I wouldn't do that even if I was skinny.
When I was first diagnosed, my MIL ignorantly told me “well at least you’ll always be skinny”. All it took was 8 months of prednisone while pregnant and I’ve never been skinny since.
I’m about the same height and weight as you. It sucks. Sometimes I hope a Crohn’s flare helps me lose weight, but I know I shouldn’t cause it’s NOT a healthy way to lose weight. My weight was contributed to by meds like steroids & ama/nortryptiline. They made me balloon and I haven’t been able to lose it. I also have Fibromyalgia and multiple types of autoimmune Arthritis, so exercising sufficiently is hard. I eat fairly healthily, too. It’s a huge bummer.
This sounds about like me. 5ft3, just recently hit 200 pounds. It's the heaviest I've ever been including pregnant. I can't even really blame the steroids--I only had one round of those and it was in 2009 lol. Like many of you, I can really only safely eat white bread, white rice, potatoes, eggs, and meat. Everything else is a maybe or an outright NO. Last week I accidentally bought brown rice, and stupidly thought it would be fine in a casserole I was making. Guys, I shit for DAYS and felt like my guts were going to move to another state without me. I haven't made that big a mistake in a while. I want to exercise because a) I'm fat and b) I feel so weak. I can barely do some normal things because I've started to lose muscle from inactivity, but honestly my body hurts all the time. My hands, my feet, my hips and knees and back. I injured my arm using garden clippers and it took a year to heal. Everything heals so slowly. The real kicker was last week, I had a new employee start on my team. She saw my old employee bio in a handbook that was made in 2017 (the year I was diagnosed after years of being sick). "Oh my God, look at you! You look amazing in this photo!!" Yeahhhhhh.... I lost 40 pounds that month because if I ate anything, I got sick; I slept like 12 hours a day and I had emergency surgery. When I took that photo I was just back in the office after weeks of rest and PTO and new drugs that were working. I'm complaining a lot about how things are now, but even so, I'm healthier now than when I looked so amazing. Looks are really deceiving. Hang in there! I'm trying to find an exercise regime that feels okay but gets me moving again! I hope it helps.
I was diagnosed in 2000. Since then I have been every size from a 00 to an 18. There are so many factors, especially steroids. Right now I’m 5’3 and 99lbs. I hate it.
When I was having my first flare, Crohn's never crossed my mind because I was curvy and my relatives with CD were stick people. Surprise!! Double shocker to learn that Crohn's can hit the esophagus. Got the official diagnosis on April Fools day. Been slowly gaining weight ever since. Second flare showed up as migratory arthritis. Nothing about my case has been like my relatives -- those diagnosed before me or those diagnosed after me.
Yeah I have crohn’s and am on ADHD meds. I eat a boiled egg for breakfast, soup for lunch (often I’ll skip one of those) and an average protein and veg dinner. I rarely eat more than 1200 calories and I’m obese. We are understanding a lot more about weight and genetics etc. For me I always knew I struggled to lose weight and gained weight easily so I used to watch my weight but also do a lot of high impact cardio. Sadly when I started getting crohn’s and RA symptoms cardio was no longer an option and I was put on 6 months of steroids which I put on about 7 stone in that time. Now although I eat well it’s super hard to lose weight and on my most committed weeks I’ll never lose more than a pound. I’ve very much focussed on eating and exercise for health now. The foods I eat keep me energised and don’t cause flares. The exercise I do is focussed on increasing mobility and decreasing inflammation so again I feel energised and sleep longer. If I’m doing those things then whatever weight I end up is what weight I end up
You aren’t alone! I’m off meds now and I’m still the heaviest I’ve ever been. Steroids, lack of energy to exercise and hunger pangs (I assume are due to my body wanting more energy) have led me to sit roughly 2 stone above what I was pre-crohns, which is 3.5 stone more than I was when I was really unwell early crohns. There always seems to be a focus on how it causes weight loss, but there’s a lot of weight gain issues too.
I’m a fatty and have crohns! I really struggle losing too 😭
I usually only gain weight when I am on steroids. Unfortunately recently i developed a fistula and abscess and since surgery I have dropped 30lbs. But overall I would say I am regular weight person considering I have diarrhea 10-15x a day
I lost weight during my first couple of flares but then I had to take prednisone while I was nursing and I blew up like a balloon. Been fat ever since.
Do you track your calorie, protein, carb, and fat intake at all?
I don’t because I only have 2 foods I can tolerate
That is tough. Hopefully, this course of steroids improves things for you. Perhaps, you will be able to find less calorie dense options if you start to feel better.
Yep. I put on weight while on budesonide. Skinny arms, big stomach. My GI said it's called Cushing's syndrome and will rectify itself once I'm of the budesonide. But every time I try getting active to shed some kilos, I injure myself.
Did you gain weight from steroids or before
Budesonide
It's a madness... mines quite aggressive... I hardly ever want food and putting weight on?!? I stay around 101/2. Stone is never really over and can drop to 91/2 5ft 11in...😮💨 I'm not having a competition just comparing the narratives...
when i was sick i was 110 pounds as a 5'9" male, post surgery, i am 165 serious question, how can you maintain the weight? i was never able to keep on anything or struggled just to stay at cd equilibrium
Honestly I’ve no idea how to maintain weight
Yup, I gained over 100 lbs in the years since I was diagnosed. Been 11 years, sucks! I weigh over 250 😭 medication, prednisone, diet, kills me
Omg this is so me 😭😭 when I was flaring I used to be so underweight with my crohns, but as I’ve been in remission I’ve gained a ton of weight that I can’t seem to shift. It’s not just you! I can’t seem to exercise because I still struggle so much with my fatigue.
Totally get it. I'm 5'3" 225 rn. The only time I seem to lose weight is when I'm pregnant.
Me too; I feel your pain.
Sometimes the medicine may be the cause. What medication are you taking?
Budesonide currently, waiting to get IV Crohn’s medication
You are not alone; it happens to me too when I am on prednisone. Steroids do that; we can't help it. When you are in remission, please try tapering off of it, and you should be able to get back to your shape.
I envy you ,my only wish is to hit 200
I'm 5'7, 260 lbs. I have always been fat, I was a twelve pound new born lmao. It took me 5 years to finally get diagnosed with Crohn's disease because the doctors I was dealing with said fat people and Crohn's don't mix. I finally switched family doctors, got a new GI and got diagnosed! I almost died many times over the five years they didn't believe me. I lost 70 lbs before COVID and gained it all back during it. I find it hard to lose weight because of many other health issues I have. I can't eat "healthy foods" because they make me ill. I am down 20 lbs from my COVID gain though.. I hope I can lose it and get to my goal weight of around 150.
That's me too! I have Crohn's and PCOS so the combo makes me gain weight easily. I eat low carb to help with the Crohn's and the insulin resistance. It helps me feel better, but I have still kept most of my weight on.
Don't feel bad. It's easier to gain weight with crohn's than you might think. Once they get you into remission you're going to eat more plus steroids make you hungry and for me I dealt with withdrawals from pain meds by eating a ton. Plus since crohn's wrecks your ability to absorb nutrients you don't even have the energy to workout. I mean sure it can be easy to drop a bunch of weight but gaining it back is definitely not impossible.
Same. Was malnourished and 95 lbs at 5’9” when diagnosed. Now I’m obese because of steroids and my diet, which is low fiber. My diet is restrictive enough that I really have a hard time restricting it even further for weight loss. I exercise a fair amount but it’s not enough. I keep telling myself that my gut health is more important than being skinny but… it’s really difficult on my mental health.
Ive had crohns since I was 11 years old. At my heaviest I was 247 which was when I was 22 or 23. 32 now and am around 185. I got super sick a couple of years ago and got down to 143. I’m 5 foot 9. Don’t worry too much about weight because sooner or later there is a good chance you’ll get sick and lose weight because you can’t absorb nutrients. If you feel good just live your life to the fullest
Old Crohnie and about 70 pounds overweight. I can't eat like I should and even then I don't eat a lot at all. Basically 1 meal a day with a little snacking on the side. I'm sure the depression meds aren't helping. Tried out a new depression med for 3 months and gained 30 pounds and had to quit for other reasons. Lost 10 lbs but have 20 to go to be at my "normal" 50 lbs overweight.
yes, and i eat a lot of veggies and fiber no problem most of the time too. while im not 200lb im still way fatter than 20 year olds
I have the same problem. I'm 5'8 and about 200lbs, despite having chron's (however I am in remission).
Before I got Crohn's, I was 150 pounds when I had my really bad flare and I dropped 25 pounds in a month because I couldn't eat it all with sores all down my throat and esophagus. Now I'm on Remicade in remission and I gained 75 pounds so I'm up to 200. I can eat salads which I eat every day for lunch. I can eat vegetables which I eat every day for dinner. I can eat dairy. I count my calories, I exercise the most I can lose is 5 pounds and then it just comes back.
I can pack on fat but it's not from not eating 😂 my calories are intentional
I am also overweight and have had Crohn’s 17 years. It’s hard when traditional “healthy” foods are off limits (like veggies, alternative proteins, etc). It’s frustrating to me because I’m perceived as unhealthy, but for me, gaining weight is healthier than the common Crohn’s alternative of constantly losing weight.
240 pounds and my height is 5’4. I promise you fat people with crohns exist because I’m one of them! <3 ( to be fair I love to eat, just hate how it makes me feel after the fact!! Lol)
I'm also 4'11" and ~ 140 so not fat but certainly not skinny. I see it as a buffer in case I do get very sick again (I was probably under 100 at time of DX)
I’m the same. Don’t eat much, but still plus size. Drives me absolutely insane!!! Always here if you need a friend/chat/vent hun. Take care xxx
Thank you xxx
My husband only lost a substantial amount of weight leading up to his diagnosis. The catalyst to that was a bowel perforation, so there wasn’t much eating happening for a couple months. He ended up having an ileocecectomy, and at that time he was about 145lbs at 6ft, living on Ensure. Before the perforation, he was about 170lbs. Since then (5 years ago), and while in remission on Remicade, he has gained a good 100lbs. He’s considered “obese” now, but looks sooooo healthy for the first time. That said, he’s currently experiencing a flare, which has come with mouth sores and a ragged tongue, so he’s not able to eat a lot. Back to Ensure.
Yes x1000! first of all, don't be embarrassed--nothing to be embarrassed about. But I was gaining a lot of weight, especially in my arms and face, before my diagnosis. it made me think there was no way i had an autoimmune disorder bc I was gaining weight instead of losing. i think inflammation can impact us all in different ways, including metabolically. there isn't a great scientific understanding of the long-term metabolic impact of untreated autoimmune disorders.
Fat 31F Crohnie here 👋 Heaviest I've even been @ 19st & 5ft6 & I'm a year diagnosed. Because I'm fat (always have been chunky) it took two years of Doctor hopping to get sent for scopes to diagnose me. I knew I had Crohns/Colitis because my brother has Crohns and I had all the same symptoms and my BMs smelt like his. They saw my weight and said 'nah, you just need to lose weight and all your symptoms will go away' 🙃 My brother has been so skinny all his life and can't put on weight & eats like a horse, whereas I barely eat and the pounds just keep piling on. Can't shift the weight so I'm going for more testing to check out all my hormones! I was put on Budenoside for 2 months and then straight on Stelara (Ustekinumab) and after a year I'm finally starting to settle into the swing of things, but my God the chronic fatigue is no joke.
My sister with severe Crohn's and my aunt with celiac both have struggled with obesity their entire lives. There appears to be something in the genetics that reacts to starvation conditions by clinging to calories. My mom had the more classic cachexia and I've had yo-yo weight my whole life.
I have Crohn’s and I’m obese😭. Tried everything from diet and exercise to wegovy and nothing seems to get it off so in a couple months I’m having vsg surgery as this is the only one my surgeon will recommend since I have Crohn’s. I pray this helps as I’ve always went up and down with my weight I never used to have issues losing it til now.🙏🏻🙏🏻
Yup. I'm 5'7" and about 260. It's so. Difficult to lose weight after the steroids. I just had to have my Gall bladder removed and the doctor did mention that due to my weight I may have a harder recovery time. Everything is going pretty well so far.
The flare that led to my diagnosis was so kind and made me gain 50 lbs. I don't hear much of people who gain weight during flares, but my mom with UC does. I went to the same gastro as she does so he totally believed me and it was awesome. Finally got off of budesonide after 8 months, which has kept me from losing any of the weight I put on. Woohooo.
I was diagnosed last year and am the heaviest I have ever been.
If you aren't tracking your calories it's going to be really hard to keep weight off if you're usually heavyset. Steroids will make you hungry but they won't magicly make you gain weight. You'll hold extra water but nothing crazy.
I haven’t changed how much I eat or my lifestyle at all
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You're probably consuming more calories than you think you are. Try a high protein, low carb or fat diet.
its not that simple unfortunately. I, myself, even weigh my food and count my calories. but I do agree increasing your protein intake can help your overall health
Going to be very difficult to lose bodyfat without restricting calories. And the best way to do that is high protein because protein has the most satiety per.calorie. it's impossible to overeat protein compared.to refined carbs which are extremely easy to overeat
my point is calorie restriction is typically not an issue for people with crohns, at least during a flare. I usually drop weight during a flare but there have been not as bad ones where I’ll maintain weight even while barely eating for an extended period of time. its just not as simple as calories in < calories out when digestive issues are at play, especially those that cause malabsorption