Encouragement for new J Pouchers

I remember your earlier posts and you were not a happy camper. So glad you have turned the corner. It will only improve from here as well.

Thanks Marianne. You are absolutely right. Time does help - it is just hard to see that when you are at the beginning stages of recovery.

That's awesome Christine - I remember your posts too as we had our takedown the same week. I'm so pleased things are getting better for you.

How are you doing?

I think alot of us relate to your experience.

For myself it was almost an entire year before I have now begun to feel like my body has adjusted more. I still have rough nights with waking up and bathroom trips etc.... but my daytimes have become pretty routine. And I'm fully expecting my nights will slowly improve as I try out other night time coping techniques and body continues to adjust (??).... hoping.....

and for any of the new j pouchers who are still in the thick of the rough times... use the search functionality in this forum if you don't find any ideas in current threads. Lots of good ideas in this forum...........

I have been having a horrible week but reading your post really raised my spirits. I cannot wait until this is not the most current topic of my life.

It does get better. I didn't think it would but it does. Don't lose faith. PM me if you need to.

Christine

i cosign this also, as my takedown was april 13th, and i have JUST made what i feel are noticeable improvements in the last two weeks. good luck to all. it will happen.

Hi I am a new member and wanted to share my story to add some encouragement to others. I have had UC since the birth of my son in 1993. I wasn't too sick over the years, but had a couple of bad bouts and was hospitalized only once. I had yearly colonoscopies and in Nov.2011 my scope showed that some of the cells of my large bowel were looking rather suspicious. My gastroenterologist had me see a surgeon, and she was very concerned. After discussing my case with others and reviewing results, she thought it best I have the large bowel removed. Needless to say, I was shocked. I went through a period where I was very anxious, upset and scared. I couldn't sleep well and was having a hard time coming to grips with the fact that I may have to have a colostomy. I even took a trip to Bahamas with my husband to try and relax, but that, too, proved not to help. A positive factor was that my surgeon is the only one in my region that could do the surgery laproscopicaly. She explained about the j-pouch(I had never heard of it until that day!) and that she may have to perform a colostomy temporarily. Surgery was set for Feb.15/12 and she said it would be about 7 hours. I was a total wreck. I went into the surgery while my husband waited in the family room. Things went very well. She was done in 5 hours and was able to perform the j-pouch all in one surgery. She said everything looked good on the inside, so she decided to do everything in one step. I woke up and felt my abdomen area feeling for the colostomy and there wasn't one. I was so relieved. I went up to my room and felt quite good. The next day was fine as well. I was up walking and didn't feel too bad. After that, things went downhill a bit. I started vomiting for almost a week straight, and they couldn't figure out what was wrong. They finally discovered that I had a blood clot on the portal vein that goes to the liver which was causing me to be very sick, but once they started treating the clot, things got better. I was supposed to be in the hospital for 5 days and was there for 23 days. I had some rough days, felt angry, sad, depressed...I lost 20 lbs. while I was in the hospital.

Now jump to Aug.2012 and I am feeling great. I returned to work in May, started back at playing soccer in June and I am coping well. My surgeon says except for the blood clot setback, I am doing great. I am able to sleep through nearly every night, am eating a well-rounded diet, having no pain and feeling nearly back to normal. I was fortunate that I was not very sick with my UC, so I think that played a role in my recovery. According to other patients on the floor I was on, having the j-pouch in one step is not very common, so I consider myself lucky. I still have days I feel sad and depressed, but it passed quickly and realize I have a future with my family.

Please, stay strong and know you can get through it! I did and am relieved.

Hi Wendy and welcome! That is some story. You are right, having a one step isn't too common for the exact reason you mentioned...most of us are just too sick going into surgery. That's great that you got to skip all those steps. The blood clot must have been terribly scary. That I suppose could happen in any kind of surgery. Glad you are doing well now.

Great to hear your success story Wendy. We need to hear more of them to stay encouraged.

God bless.
Christine

Hello all -
I,too, am feeling a bit better since takedown 4/30/2012. I didn't ever think I would feel like this. For me, the picc line has helped a great deal. I am on it every other day still. Hoping to get off the picc line soon.

I can feel the j pouch getting stronger, though. I still get up at night at least 3 times. During the day I am stronger so that I can do the simple things (like household chores). That is a good thing!

It is good to read that everyone is doing well.

Keeping the faith -
Roberta

Roberta,
Glad to hear you are turning the corner finally!

So happy I found this site I'm 5 days post op from illeostomy take down ,I had a my rectum removed and a j pouch made 3 months ago due to having stage T2 bowel cancer at 35
I just got out of hospital today and bowels have only just started to work it scary when you dont know whats happening is normal and this site has been so amazing in the short time I have started reading thank you for sharing your journeys to help people like me

It does get better and better as time goes on. Hang in there hon!