Did step 1 in October 2019, due to severe uc, all going good with the bag, but i have a lot of trouble due to mucus, straining and some blood from my rectal stump. Sometimes it strains so hard i can't pew, like it's blocking the urinary ways somehow..
Now I'm getting really worried i can't have the step two because of the inflammation in my rectum..
Is there anyone else who had this problem and still got the step two anyway?
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I too had severe UC and had an emergency operation to remove my colon. My rectum was left in during this first step. I experienced mucus and bleeding from my rectal stump everyday for the 4 years that I had an ostomy. This was because UC affects the colon and the rectum. I decided that I wanted to try having j pouch surgery and was told that the rectal stump must be removed as it is still diseased. So they left the sphincter muscles
Sorry to hear this. They left the sphincter muscles so you could try later?
I was at a rectum scope today, my rectum was severe inflamed, so they won't do a surgery when it's like this..
Sorry I posted that without finishing what I was saying. Basically try not to worry about inflammation in your rectum as that is to be expected. They will most likely remove your rectum before making the j pouch. It's a lot for your body to go through and takes time to adjust. I'm not sure about the unitary problems and if they're linked to the surgery but I would go to a doctor to find out. I hope this helps 
The urinary problems isn't a problem actually, but i belive when the rectum is acting up, like really spasm.. They block something.. But all i have to do is try to relax then its fine
Well, the doctor toady basically told me they would not operate as long as its inflamed... Im on 30mg prednisolone daily now and that doesn't do anything..
Okay I see I understand that this is a very stressful situation. Has your doctor spoke about removing the rectum? I have had a j pouch now for a year and a half with it being attached to just the sphincter muscles. It took a long time to get used to and I have had scopes that found a small amount ulcers and inflammation in my pouch, but was told that my j pouch should be fine for now as the inflammation is no where near as bad as is was in my colon and rectum. I too did not have any relief from taking prednisolone when I still had my rectum. If you really want to have the j pouch surgery then I think you should ask your doctor about if removal of the stump would be an option for you. Although try not to rush things if you can manage living with your ostomy for a while so your body can have time to recover ☺️
This was a new gastrointestinal doctor who did the rectum scope.
Haven't had a talk with the surgeon yet. But i think they are quite hard on this in Norway.
No problems with my ileostomy whatsoever but the only problem is that I'm back to square one again.. Like i was before removal of the colon. My main problems was tenesmus. Even though the whole colon and rectum was inflamed for 4 years, but that didn't i feel anything about.
Just hope the rectum will calm down one day..
I live in the UK and had my surgeries here so I'm unsure about the way they do things in Norway. I was told by doctors that my rectum had to be removed because the active disease inside it meant I was at high risk of developing rectal cancer. Tenesmus was also a problem I had and when I first had my rectum removal and j pouch formed it actually felt a lot worse than I had experienced before. I felt devastated that I had these extreme pains, I spoke to my surgeon and he told me to wait it out and take pain killers. It took months after rectum removal and j pouch surgery before the tenesmus calmed down. A lot of things wasn't explained to me when I had my colon removed because it was done so suddenly. They pretty much said I'd have an stoma bag and could have surgery later for a inside pouch. I didn't understand how much pain my body would have to go through. Although I am now relatively happy with my j pouch now it has healed. I wish you the best of luck with your ibd battle and hope you have some relief soon ☺️
Thanks
Well, some good news. Talked with a surgeon today, and now I'm scheduled for a j pouch surgery within 2 months, completely different from what my gi said after my recto scope.
He checked my anus with some scope and said everything looked OK for a surgery, even though I'm still heavily inflamed.
So, happy days again
That's brilliant news, congratulations! I hope all goes well 😄
Hopefully it will thanks for the support
