I had my take down 11 months ago and can't gain weight. I was 142 when I got sick, now I'm 118 to 120 but would love to hit 130. Just can't seem to put it on. It is very frustrating.

Gosh - I went crazy being in the hospital for 11 days.  I don’t know how you could have survived 6 months.  I give you a lot of credit.   I got sick in 1994 also, and I was 24 at the time.  My path was different, no drugs worked for me other than steroids, so I lived on super high doses of steroids for 25 years straight - every day.  My colon was bad the entire time, but just well enough for me to have a family and work.  Finally - after 25 years I went for the J Pouch in 2019 - and I have my takedown in March 2021.  I had trouble eating for the last year with my ileostomy- I lost about 80 pounds.  I was happy to lose the weight because I was very obese from the steroids.  I am scared for a life with a J Pouch - but I am hopeful.  I am glad that you feel 75% better.  I hope you fully recover.  

I have not been able to gain back weight since I had my surgeries about 4 1/2 years ago.  I was about 116 before getting sick and lost about 35 lbs.  I have been just around 100 lbs since takedown.  I would like to be at least 110 but I eat pretty healthy and try to get good fats into my diet.  I also have pre diabetes so I need to watch sugar/carbs.  I just do the best I can. It used to upset me but I try to not focus on it as much.  

I have consistently struggled to keep weight off since I got a J Pouch. Weight gain or lack thereof I think ties in to your individual metabolism, level of exercise and diet. For me to be able to lose any weight I need to go on a borderline starvation diet. So I think it's highly individual and the best thing you can do is work with a registered dietician and/or personal trainer familiar with dietary issues of those with IBD to help fix any perceived weight gain or loss problem.

CTBarrister, I did go to a registered dietitian/nutritionist through Yale and she was very good.  She gave me lots of information as far as adding good snacks into my diet, making high protein shakes and good, healthy fats.  Unfortunately, insurance doesn’t cover the cost, so I just went for the initial appointment and had a couple of follow up phone calls and e-mails. I do exercise as well but not going to the gym due to Covid.  I don’t think I have ever been overweight in my life including when I was pregnant with my daughters.  Like you stated, a lot has to do with metabolism, as well.  

CTB23,

Thats very disappointing as far as insurance not covering the cost of the registered dietician or nutritionist. I recall at one time I also saw a registered dietician or nutritionist at Yale but it was in the context of a seminar. This was around 8 years ago and I learned about it through a CCFA support group I was in at that time. It was a very good seminar although the focus of it wasn't really weight gain but more along the line of eating healthy for purposes of good cardiovascular and gastric health generally.

I find it somewhat ironic that there are more threads on the board about gaining weight than losing weight, although I have seen a number of threads on both. The irony is that the real health problems come from being overweight and unless one is emaciated due to bulimia or the like, I don't think being underweight or lean is necessarily a bad thing. Once the weight creeps up over what it should be, for most people it becomes hard to keep off and health problems like high blood pressure, creaky knees, sleep apnea and diabetes start rearing their ugly heads. My problem is that I can actually eat anything, am a foodie by nature and tend to overeat, tend to gain weight by genetics, don't exercise enough (worsened now by Covid) and have a sedentary lifestyle.

In my CCFA support group I remember a very attractive young woman who was on the lean side but not unhealthy looking. She was always trying to gain weight and was bananas neurotic when she couldn't. She gave up vegetarianism, due to it keeping her weight down. She had Crohn's (no J Pouch), but I kind of thought she was constantly worrying about a problem that wasn't really a problem as far as I could see.

Ultimately it should be your primary care doctor's call on whether you should need to gain weight. If the PCP isn't worried then you shouldn't be. If you did get that opinion from the PCP to gain weight, then ask the PCP to write a letter on the insurance coverage issue. Maybe you get hardship coverage.

I agree.  When I was in the military, my weight was always between 107-114 and I worked in food service and hospital dietary.  Right now I feel that although my weight is on the lean side, I have plenty of stamina/energy, so not really too concerned.  I had to make changes in cooking meals due to my husband having a stroke a couple of years ago so that also adds to how we eat.  It’s all good, though!

Thanks for all of your thoughtful and wonderful replies, which already is giving me hope for the future!!!

Good luck!  

Definitely agreee! No matter what I cannot seem to gain weight either. It was the same with a ileostomy too. I am a vegetarian though and have 14-20bowel movements a day so maybe that is why lol

When I had my ileo I actually gained weight.  I was up to 107.  It’s just since my takedown that it’s been harder to gain weight.

Husband has no issues maintaining his weight (25 years with J-pouch). Hands on your back..

I'm gaining weight.I eat homemade burgers,mild curries ,hot dogs.vegan ice creams.

@lablover posted:

Husband has no issues maintaining his weight (25 years with J-pouch). Hands on your back..

I love your quote! Some people do not like it but I am one of the people that do!!!

@Doug K posted:

Gosh - I went crazy being in the hospital for 11 days.  I don’t know how you could have survived 6 months.  I give you a lot of credit.   I got sick in 1994 also, and I was 24 at the time.  My path was different, no drugs worked for me other than steroids, so I lived on super high doses of steroids for 25 years straight - every day.  My colon was bad the entire time, but just well enough for me to have a family and work.  Finally - after 25 years I went for the J Pouch in 2019 - and I have my takedown in March 2021.  I had trouble eating for the last year with my ileostomy- I lost about 80 pounds.  I was happy to lose the weight because I was very obese from the steroids.  I am scared for a life with a J Pouch - but I am hopeful.  I am glad that you feel 75% better.  I hope you fully recover.  

Hey Doug Hope you have good luck with the Jpouch.I was scared also.but I am more scared of the bag now.