Struggling after j-pouch reversal surgery. Can anyone help?

Hi There.. firstly welcome, you've come to the right place. The folks on here are amazing and you'll find a lot of support and advice, from people who understand, have been through it and also have excellent medical knowledge.

You've been through a lot in a very short space of time, so it's no wonder you feel tired and weak and it's going to take a little while to fully recover.

I don't have a J pouch so can't answer your questions I'm afraid, but just wanted to say hello and that I'm sure others will be along soon with advice. As for food, I have an ileostomy, but the advice on food is similar. Some folk can eat what they like, others have to be a little more cautious. It's still early days for you, so don't be too ambitious. Certainly food which is easy to digest and light on the stomach is the way forwards. You'll need to get some protein as you don't eat fish and meat. Do you eat dairy and eggs? Avoid fibre and too much fruit and veg for the moment, but it'll be a case of trial and error until you start to find things that work.

Hang in there, it's early days and will get better. Sarah

Oh Lord! I feel for you. No J-pouch here but just wanted to let you know I empathize with you. best of luck. Rosemary

I'm not using my jpouch just yet but I'll try to help. I haven't heard of anyone needing to use enemas with a jpouch though.

I haven't tried Lotimil, but Imodium works for me. It gives me dry mouth so I try to only take it when it is really needed.

What foods are you eating? Foods like rice, bread, bananas, potatoes, applesauce can all help to thicken up the output. Salad also helps slow my output. You could also try Metamucil or Benefiber.

As for low energy, go get your blood work done. You may have low B12 or Vitamin D. Dehydration can also cause low energy.

I don't have a jpouch either, but wanted to tell you to hang in there and try to remember it will get better!
Getting energy back takes time! I had an emergency surgery for an adhesion 2 weeks ago and 6 laps around the house and some laundry and dishes and I was needing a nap, and that's nowhere near as tough as what you have been through! Try some sublingual b12 and some vitamin d for energy, it may help.
As for food, its the same as with an ileo, for the first 6to8 weeks watch the fresh veggies, and fruits. Maybe you could have some applesauce to thicken, or a banana, if they don't give you heartburn. Fries always thicken mine too. The only things I've ever had trouble with were fried cheese sticks and popcorn and that didn't start until recently, probably when the adhesions began.
Something that may help is to eat some bread with stuff that might be hard to digest,seems to help it move along.
Good luck!

I can't thank you guys enough for your feedback. Thanks to those who are there for support, and those that had some recommendations for me. I also visited the j-pouch.org site suggested, and the blogs are very informative. Thank you for passing that along.

Food - To answer some of the questions...My surgery was January 6, 2012. Yes, I eat eggs and dairy. I'm encoraged to hear that fruit and veggies may be possible in time. For now I'm eating rice, pasta and bread. I never really had time to figure out what worked with my system, because I was diagnosed and went through all three surgeries within 7 months. I didn't even know what Ulcerative Colitis was until this past June! My surgeons told me I would be able to eat a regular diet after the third surgery, so you could imagine what the first two months were like when I was following that advice. What do metamucil and benefiber do, and how often and when do you take them?

Medication - I'm taking the opium to help to slow my intestines, but it sounds like that's not a popular medication for others on this site. Everything I read from other posts is about Lomotil and Immodium. That makes me curious why I was prescribed that. Also, I thought the enemas were because I had pain from straining to go to the bathroom, but now I'm going to ask my doctor after the comments about not needing rectal medicine after a j-pouch.

Energy - thanks for the suggestions about vitamin D, B-12, and carnation instant breakfast. I'm going to try all three. Also, I think dehydration is probably a bigger factor than I realize, so I'm going to concentrate on drinking lots of water.

I have a few more questions after reading the responses... What are the symptoms of pouchitis, and how is it treated? Is it normal to strain, or feel slight pain when you're going to the bathroom? I also forgot to mention that I'm also taking a Cortifoam enema. Has anyone taken that, or know why I would be prescribed that. I guess that's another one I can ask my doctor about. Do you switch to a GI doctor, or stay with your surgeon now that the last surgery is over? I had no idea about transit times before finding this site. How do you measure them? Also, how do you pinpoint what specific food it was that didn't work for you?

Again, I appreciate everyones help and support!

yes definitely have your surgeon explain why you are still on rectal meds. These are now going directly into your small intestines as you no longer have a rectum. Its very odd that you would be prescribed these kinds of medicines for pain from straining. Rectal pain and feeling like you can't get it all out is normal at first. As your pouch expands and you learn how to use the sphincter instead of the rectum to expel stool it will lessen and for the most part go away. I remember sitting on the toilet saying, "Out! I know i have to poop why wont it come out!" it gets easier :) those feelings decrease and disappear over time. I recommend using wet wipes on your bottom. Or better yet, buying a bidet. Great to get all the stuff away while being gentle. I use wet wipes away from home and my wonderful COCO bidet at home. So worth the money! If you are still having burning or random sharp pains, get some Calmoseptine. You can get this at any pharmacy, but you have to go to the counter and ask for it. They keep it back there. i get mine at Wal-mart. Its cooling and helps heal broken skin.

Your goal especially in the beginning should be to drink 12 to 16 glasses of 8oz of water a day at least. You can back down to 10 after you aren't going to the bathroom so much, but more is always better for us. I try to drink 3 to 4 liters a day, which is what my water bottle is. That will help everything overall.

Most Jpouchers only see their surgeons after surgery. GI doctors don't specialize in your new anatomy, the surgeon does. Speaking of, was it your GI doctor or the surgeon that gave you the rectal meds? If it was the GI, most definitely ask the surgeon about it!

NewShiney has the pouchitis symptoms down. It can make you feel like you have the flu too. There are lots of posts on J-pouch.org about pouchitis.

The best way to figure out which food may be bothering you is only eat foods you know you can handle and try one new thing a day. At 2 months, I was eating almost anything I wanted. (I did recover rather quickly though) I was eating well cooked veggies after only a few weeks. Things like nuts, popcorn and raw veggies you want to take it slow on, but low fiber foods that you tolerated with an ostomy you can surely eat now. The only things I can't eat due to J-pouch are leafy greens. I can eat anything else I want, somethings just make me gassy and so i choose to only eat them at home. I drink beer, eat popcorn, Indian food you name it! it changes my consistency, but i'm ok with that. as long as i know what to expect I'm fine with it. J-pouch doesn't carry the same amount of obstruction risk as the ostomy. Its not impossible, but after a few months once everything has settled and healed and your down to going 6-8 times a day, you'll be able to eat whatever you want.

I'm glad you've found us and are getting the answers that, quite frankly, your surgeon should have told you about to begin with! You should just wonder around J-pouch.org typing in subjects you have questions for, you'll get a lot of answers and learn lots of things you probably didn't even think of. I hope everything that's currently bothering you improves and you start feeling better soon!

Oh, one more thought. If the peritineal irritation continues past the high output solution or if you are taking flagyll, steroids or any oral antibiotics you had to consider yeast (Candida) in your GI tract. Drs only think of femine yeast problems and with a jpouch, i have had one without the other. Having a jpouch when high output, there is no Way to colonize the good bacteria if is constantly being washed away. Pills and yogurt are hopeless when you have taken antibiotics. The yeast can show as thrush in your mouth or irritation on the 'other end" with high output and even stomach pain. Yeast can cause the irritation adding to the high output and more antibiotics just add to the condition. If I ever had a sinus infection, I would ask for an injection of antibiotics v.s. pills. If antibiotics were only available by pill form, ask for 2 diflucan doses and hold the diflucan knowing diarhea is coming. One to take right away at the onset and another to take a week later after completing the antibiotic therapy. The first one solves the high output caused by the yeast, but yeast has spores that will comeback as an infection while the acidopholus is taking hold. The pouchitis will appear to return and more flagyll just adds more yeast in the bowel.