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Hi! I had my ileostomy reversal on May 22nd, so I am now living with a new J-pouch. I am feeling very discouraged because I still feel weak and absolutely depleted of energy at all times. Even after all of this, I still feel very achey and sick, even though (Thankfully) I am no longer in severe pain.

I go to the bathroom so frequently right now that I am starting to regret this surgery. I am unable to keep up with my summer coarse work, and for me, falling behind in college has been the most devastating part of this disease and the surgery complications. I am feeling quite depressed, and it still feels like I will never recover from my two year battle with UC.

I guess I just need some encouragement, because right now I am terrified that I will never be able to finish school or even feel up to leaving the house at this point. I just wanted the surgery to be the end of it, and I feel very unsure about my future right now. Thank you for your support...

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Oh my gosh, you are so early on in the recovery from takedown! It is probably hard to even imagine it getting better, but the likelihood of it is that it will, and does, for most people.

I had UC for 8-9 years, from age 11 to 19, and had my surgery at 19 when I was entrenched in college. I *did* have to take off a spring and summer semester, to allow for my surgeries and recovery, though... that might be something you have to consider, at least the summer semester (if possible). My takedown was on May 15, 1990, and by that fall, when I started back up at school, I was doing well enough to get back to commuting and everything. I was in nursing school, and started clinicals, and I was ok to do that, too, without much bathroom issue at all.

Sometimes, if your output is too watery, there are foods you can eat to "thicken" things. A lot of people here use Immodium or Lomotil or Metamucil to slow things down. I never needed that stuff, food worked well enough for me, but it's worth researching on here some of those meds that people find helpful. There's also a link to Dietary Guidelines that you might find helpful in the beginning, too.

I hope it gets better for you... it will be hard to see the change day by day, but slowly you should see patterns emerge, and changes happening for the better. Try not to get discouraged. This is a great site for support, and if you have a local support group, you might want to get involved with them, too. Hang in there!
rachelraven
It gets better with time! You've gone through major surgery and it takes awhile to get your energy back. Or that's how it's been for me. . .I tried to think that the energy was all going to healing and that's why I had little energy for anything else. I think it took me a good 6 weeks to even start shuffling around the block with my dog. 2-3 months to be really mobile. But I have low energy levels anyway because of a real physical issue.

If you don't know, find out what your vitamin B and D levels are. Mine were very low. Your doctor should be able to tell you if they are low.

Hang in there!
D
Hi Shelbyc,sorry i don,t know your real name.
As you are only a couple of weeks post take down I would expect you to be stiil a bit sore from all the ops.I was quite sore for a few months and was very carefull with what I did as I was one of the first pouch ops done in Australia in 1981 and did not want to damage anything.
At this point in time you might try keepng a food diary of everything you eat and that means everthing so you can find out what your pouch likes so to speack.
I was also taught when I had my closure done that when you feel the need to go to try and hold it in a bit longer each time as this strethes the pouch abit and gets the muscles around the pouch used to being used again.
I did this and it worked for me.
Hope you find this info usefull.
Best Regards from Australia.
John.
ps If I had not had my surgery done I don,t thing that I could have lived the life that I have had if I had put up with U/C for years.
S
Hang in there, Shelby! At this time post-takedown, I was still in the hospital with a NG tube down my throat because of a partial obstruction. I know that things can be quite depressing and discouraging post-surgery, and I was quite discouraged too. But, things do wand will get better. Hang in there and try to distract yourself with some things that you find fun.
U
Yeah, you are still early in your recovery period. It will get better, try not to look at long term right now (I know that is hard) just concentrate on one day at at time. I think we all felt this way after takedown. Wondering why in the world we did this. I know I was ready to go back to an ostomy myself because for me it was so predictable. I still have issues every now and then (flagyl or cipro helps) but can do most everything I want too, just plan my meals accordingly. Keep posting and ask questions this site is so so helpful. Here's to a great recovery.
Holly M
Shelby, I had my reversal the same day that you did. I am having the same irregular and frequent trips to the bathroom. Which was bad enough but the last 2 days I have had the pleasure of severe butt burn. Those here have great advice and I just keep reminding myself that it has only been 2 weeks. It will get better just be patient. It is tough as I want to get back to being myself and put this all behind me but it takes time and 2 weeks is not a long time.

mike
PH
Hi everyone. I have been struggling with UC for a few years and just finished my take down May 23. I am anxious to get back to work but I go to the bathroom more than I did when I was sick. I still have pain in my lower belly area. My incision busted open and I have a hole that I now have to pack a wet gauze inside the hole twice a day. I wish he would have just sowed it up but i guess the doctor has his reason.
Any one have this hole problem? How long were you out of work?
S
I actually had an open wound due to infection during my first surgery (the colectomy). It started off as a small hole, but turned into a veritable fissure after a few weeks due to me still tapering off prednisone. It took about 2 months for the gaping wound to heal, but yours sounds much smaller than that, but it will probably be 5-6 weeks, if I had to guess.
S
Put on your patience hat and let things happen. That was the advice my nurse gave me when I called her about 3 months post takedown. I had just arrived at a family birthday party. Everyone had gone in and I was lurking out by the cars feeling...............socially unacceptable. I knew I'd be in the loo too much and that embarassed me. I still did not feel too hot and had not really been out socially much in quite some time due to 4 surgeries total. I called my nurse in a panic. When she said to "put on the patience hat," I had that second of stubborn silent screaming and then just relaxed. I followed her advice and now, 10 years out, I can say I truly love my pouch. It has a few issues, but it gave me my life back. Yours most likely will too. I can't answer to the college thing. I could not have done it, but I did go back to work full time as a teacher 6 weeks post takedown. It was one tough year, but I did it. We can be amazing when we have to. You are very early out and your pouch is trying to figure things out too. Give it time. Chances are it and you will be fine, but, unfortunately, it takes time.
kta

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