Seeking Encouragement

While it is pretty early in the grand scheme of things, having pouchitis early can be a worry. I do not say this to reduce your hope, but to inform you that you might have a rockier first year than is typical. It means that it will take longer to recover and you will need more patience, as difficult as that is. That is a difficult pill to swallow when you have already been through a very rough year. For me, it is better to know what I am facing than to have an unreasonable goal. Hard to find that balance of realism and positivity.

I also was extremely ill when I had surgery. I was very weak and had many complications. I would say it took a full year post op to regain my stamina, and I did not even have early pouchitis. But, I did turn a corner and things improved gradually. I found joy with small victories, like being able to go grocery shopping without using the store restroom.

Hopefully, your surgeon is being aggressive with the pouchitis, because I think that is your biggest barrier from forward progress. Every case is unique, so what is useful for one is not appropriate for all. Recovery will take what it takes, but you do need to advocate to make sure the doctors are doing what they can for you.

Jan

Hi. You are at a very early stage post--surgery, and so it's not surprising you're not feeling super-great. It does take time for your body to adjust and for you to adjust to a different way of bowel functioning. I think the most important thing is to relax and go with the flow (no pun intended). I had my surgery following a severe colitis flare after which the doctor did a colonoscopy and found low-grade displasia. (I had had ulcerative colitis since junior high school.) I had the j-pouch surgery at age 66-67.  I had a lot of itching and soreness. But after a while it cleared up. Then I had a few small bowel obstructions which were agonizing and finally had some surgery to remove adhesions left over from the initial surgery, and that cleared everything up. I say this to say that you may have some ups and downs but if you have a good doctor and relax, you should be fine. Meditating and drinking a lot of water are good! Hang in there.

I will be happy to help. My signature says it all. What works for me as I continue my daily quest to have a well functioning pouch.

my thought is this.

I am alive.

I do not have a bag.

I will never get colon cancer.

Those thoughts keep me going every day!

I'm just saying what helped me but I'm still not great but I forced myself to go back to work mainly as my funds had run out.and my first day was terrible,like my anus was on fire and my butt crack was sweating through my shorts and I used the toilet about 6 times.and I had left my creams at home.but the next day was better and things are better if I don't eat too much the night before.and I live within walking distance of some shops so I would walk up to them and it hurt and felt like I was going to have an accident but walking really helps.