Grace-

It sounds like you have something going on besides "having a J-pouch." A well-functioning J-pouch doesn't limit our diets very much, and doesn't prevent weight gain - certainly not 5 years out. I'm hoping you can get someone, probably a gastroenterologist, to help you figure out and properly manage whatever is malfunctioning. That's the only formula that makes sense to me.

 

Thanks Scott  I am seeing my gastro on Tuesday  He always tells me the same that I have a poor functioning pouch and a lot of scar tissue and that is what is causing poor digestion  he also tells me that I couldn't go thru another surgery because of all the complications I had with the J-pouch surgery.  As many of us I was very sick going into that surgery and from day 1 I had a problem with digesting food which was very painful.  I am able to eat a little moor than I could than but I still have problems.  I just added another vsl#3 packet to my diet about 4:00pm  at 8:00pm I take my antibiotic and take an immodiom before I go to bed so I am not up all night long.  I do take the lomitil or immodium in the morning.  Mid afternoon I sometimes take a immodiom.  I can't take too much it makes me bloated.  Thanks for your reply   you and Jan always give good advice and many others do also    Grace

The J-pouch does very little in terms of digestion and nutrition. Just about all of that happens before anything we eat gets to the pouch. Some of us have preexisting GI issues above the pouch (e.g. gastritis, peptic ulcers, irritable bowel syndrome, and even Crohn's), and some can have issues caused by surgery (e.g. adhesions, strictures, and leaks/abscesses). If any of these kill your appetite, make you fearful to eat, or impair absorption it's hard to gain weight. I can't tell from your descrption exacly what your GI thinks is going on, or even if he knows what he's talking about (he may be very knowledgable, but I'm not impressed yet). Are you very confident in him?

 

I'd have plenty of questions for him. When he says "scar tissue" does he mean a stricture, adhesions, or something else? When he says "poor functioning pouch" what, exactly, does he think it's doing poorly?

 

Not every problem that is identified can always be fixed or improved. On the other hand, if a problem *isn't* clearly identified it generally won't get fixed or improved.

I agree with Scott. This sounds suspiciously like something greater than having a poor pouch. I'm in my 40s, and Yeeesh. I'm 10lbs UP in the past 2 years!!

Have you had any inflammation markers checked (CRP and sed rate)?  My daughter had simmering Crohn's type colitis and didn't gain weight in a year. I'd ask for him to delve further.

I'm not totally clear why you're losing and not sustaining weight. What is your food intake like? Are you eating a little or a lot? In other words, are you not taking in enough food/calories for some reason? Or are you eating a full diet, but still losing weight?

 

I ask because in my experience when my pouch isn't functioning well and causing me pain, I do tend to avoid eating so as to avoid creating more pain. This, of course doesn't help me put on weight. Is this your situation?

 

If it is, then seems part of the solution is to sort out your pouch function. Sounds like that is easier said than done though. Have you tried the full spectrum of treatments? Xifaxin? 

 

If you're eating a full diet, then could it be a problem with absorbtion within the small bowel (above the pouch)?

 

Or if it's a question of what you're eating, then could consulting with a nutritionist/dietitian help? The low-FODMAP diet has seen me through some tough times and was recommended by a dietitian specialized in IBD matters. Although it is restrictive, it was liberating because it took me from fear of eating anything to confidence in clear guidelines (and recipes) on what to eat and avoid. It identified for me some very irritating foods (e.g., milk) that I wasn't able to pin point doing elimination diets. Now I use the diet only to inform what I eat, but have been able to broaden what I eat. There's an iphone app for the diet produced by Monash University. In any case, maybe this or something like it could help?

 

 

  

 

 

My gastro has told me I have strictures and to remove strictures is really not an option for me because he said it involves my bile duct.  On the pouch issue he says that when I go,  I have to relax because it moves and it has to be in the right position for me to release and also that the pouch is not something that I was born with so of coarse I will have some issues.  Yes to the answer that I am afraid to eat certain things because I know that it will give me pain.  I do try to eat a lot during the day but I am in the bathroom a lot so I pick on eggs  hard cheese pretzels toast with peanut butter.  I try to have a balanced dinner.  My problem is also fat intake, if I eat anything that has fat I get totally bloated with gas and the feeling of having to go to the bathroom so I stay away from fat I try to by lactose free and also I do make protein shakes with almond milk but that bothers me also so I drink them because I feel that I am getting some nourishment from them.  I also take vitamins. Could you give some suggestions on what I should be asking my gastro?  I have to go on Tuesday so I hope I will be well prepared on what to ask him.  I would totally appreciate all advice. I guess that I am still at a point that I don't know what to do to get the answers that I should be getting.  I know that most of you are much moor knowledgeable than I am about all of this.  I don't have anyone to talk to that understands so I get all my info from all of you.  Thank you all for your input and support I don't know what I would do with out all of you  Thanks  Grace. 

Grace,

First off, so sorry that this was not the 'fix it' that we all hope that our pouches will be...some of us are just magnets for complications (that's why we had pouches done in the 1st place, no?)

I have a go-to diet that I really like when I am post op, sick, have the flu or am just very tired.

Not sure if you can buy frozen puréed veggies back home but here they come in 2lbs packages...they format is like tiny little ice cubes made out of 100% natural puréed veggies.

I buy green beans, peas, carrots or pumpkin. Sometimes I mix 2 side by side other times (like tonight) I just do 1...you put them in a bowl, shove it in the microwave and and heat for about 5 minutes (covered please or it redecorates your microwave) You need to stir it a couple of times during heating. 

I then add either cubed or grated cheese, tehina, butter or anything else that is soothing and melty. 

It makes for a much more satisfying meal than soup, goes down easy and comes out easy. You could add a raw egg to it and some cheese if you want something richer, just stir in once hot and reheat for an extra minute.

I add salt/pepper but you can add whatever you like.

If you cannot buy it in the freezer section then just steam your favorite veggies and blend them with an immersion blender (hand held...its faster and less work)

Hope that this helps

Sharon

Hello Grace...3 years ago I could not figure out my pain and drastic weight loss too.  I lost almost 60 # it was awful.  Everyone thought I had cancer somewhere but all the blood work was normal and then of course, good old Cleveland Clinic found that I had C-Diff, pouchitis and Giardia and 30 day i.v. antibiotics worked and within a year I was back up to a healthy weight of 125#.  Have you had extensive blood work drawn just to check?  I feel for you but try and stay positive and keep on asking questions until you can get some help that's why we go to specialists so that we can get help.

Thank you for advice I don't believe they have frozen pureed vegies in the store but I will look.  I will do my own.  I read your posts all the time Sharon and I know you always have good advice like most of you do.  I am also going to tell my gastro to get complete blood work and ask abut c-diff.  I hadn't had a scope in about 3 years now so I am going to mention that also.  Can they tell by the scope or do you have to have a cat scan , MRI or like you mentioned just by blood work. I know that by reading every ones post  that I am not going to be 100% but I think I would feel much better if I could gain some weight and not have these issues all the time.  someone also mentioned that you were on anti biotic drip for 1 month and that was some what of cure for you.  Do you also  take anti biotic every day?  I am writing all of this down so I will have a lot of questions when I see my gastro on Tuesday  Thank you all   Grace

Hi Grace...I was on an antibiotic that is used in an IV drip here at home for 30 days for c diff and then I was free of antibiotics up to a yr. and now back on cipro.  It is a frustrating disease we have but remain strong...stay persistent.  I go back and forth on antibiotics all the time.

Patti

Thank you all again for info.  I wrote down many questions to ask on Tuesday. I will give you update on what my gastro says.  I don't know why but I always think the doctors are right about everything you really have to be your own advocate.

Thanks again   Grace

 

 

 

 

 

 

 

 

 

 

 

 

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Anybody having a prob. w/GAINING wt. since j pouch? I think , for me, it is because I can't really eat raw fruits and vegs. anymore, plus , I cant do lots of kinds of exercise, because the "rubbing" hurts my butt area.....(not trying to make trivial the issue of wt. loss, which most ppl experience)

I saw my gastro today. I wrote down many things that some of you suggested.  He did take blood work to see what was going on.  My next visit he is scheduling me for a scope .  So I want to thank everyone for giving all this info to bring to him.  Hopefully there is nothing wrong but at least I have  a better frame of mind that I am being checked out. He also gave me a prescription for peptamin which is a drink for nourishment.  I don't know if my ins co will cover but I am calling to see.  He also said that boost is another alternative but I would have to water it down a bit so it is soother on digestion. peptamin has moor nutrition that would be better to take and much milder on digestion.  So I am keeping my fingers crossed that my ins co will approve it.    Thanks again Grace

 

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Just be aware of the sugar content of nutritional drinks - they can be quite high, and sugar can feed bacterial imbalance. You might want to dilute with another nutrient-rich beverage, like unsweetened coconut milk, almond milk, etc. Trader Joe's good unsweetened milk alternative beverages. Good luck!!

  I know that sugar is not good for pouch but it something that I have to look into.  Thanks for reminding me      Grace

Hi Grace...one other thing to stay away from (although it's in alot of things...read the ingredients list carefully) is carragean.  It can cause problems in the digestive area.  I don't know if it has been medically proven with studies, but I do know that some health dieticians will tell you to stay away from it.  It is used as a thickner for alot of dairy and non dairy products.  I stay away from it all together.  Wishing you the best.

So sorry this is an issue for you.  I got home from the hosptial 2 1/2 weeks ago where i had lost 13 lbs.  Which is a lot since I started at 118 lbs.  Fortunately, I do not have issues with dairy and while I do have issues with sugar, I knew I needed to put the lbs back on.  My pouchitis of course hated the sugar, but with antibiotics, it was fine, so I have been consuming milkshakes every day, Ensures, full fat yogurt, cheese, desserts, lots of avocado, and white bread/grains since I'm still on a low residue diet.  I was able to put all the weight back on and now I'm returning back to a low sugar diet and will start slowly easing some fiber back into my diet.  Without dairy and carbs, getting enough fat and calories is sure difficult.  I wish you the best!

Thanks for all info.  You are all therapy for me.  I value every ones opinion.  I know that what works for one doesn't necessarily work for another but the advice is coming from us j-pouchers that know that  when we are having a problem we understand the problem.

 

 

K Delhi:  Yes, I have been gaining weight too, and they say my thyroid is "fine"/within "normal" range by my taking synthroid,. I write down what I eat every day, and calculate calories, and am eating around 1000 - 1200 calories a day (I'm  5'2")

I too, can't eat raw fruits and vegetables. I poop about 10 or more times a day. How can a person gain weight, barely eating, when everything I eat comes right out of me? I eat healthy, and do moderate exercise at the gym when my butt isn't burning or when I think I can go without having to go to the bathroom.. None of my doctors have any answers. I know I have interrupted sleep which could potentially affect cortisol levels,which can contribute to belly fat, but even with reducing my starches and carbs, I can barely lose a pound. I'm so frustrated. Doesn't seen fair. 

 

gaining  weight, that is a change from finding it hard to gain weight.  I am sure there are plenty of J--pouchers  that have this problem.  I am sure you will get answers. Eating raw fruit was also a problem for me in the beginning.  I can eat pears, apples, grapes in moderation and having to chew very well, but in the beginning I couldn't eat any of that. Good Luck I am sure you will get some feed back