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Ulcerative Colitis
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Posted 6/20/2015 2:12 PM (GMT 0)
The rectal cuff is typically left for later jpouch construction, as you need the muscles within for bowel control (otherwise incontinence). Not sure why the entire rectum would be left, as you can still have uc symptoms in it...
Posted 6/20/2015 2:19 PM (GMT 0)
In a 3 step, they leave the rectum for some reason. Then when you heal, they go in and remove it and construct the pouch. My dear friend embersglow, who you guys know, went in for a three step and they left the rectum. She ended up with UC in the rectum and she had to go to the bathroom a lot to pass it, almost like having UC. She ended up loving the ileo and had her rectum removed and her bum sewed up in a second step. Now she hasn't looked back. Some people who have symptoms after step 1 can treat them with canasa or cortfoam but it seems like you really have to get the 2nd step at some point to get the rectum under control.
Posted 6/20/2015 2:38 PM (GMT 0)
The entire rectum has to be left in to maintain the health of the rectal cuff so that the j-pouch can be attached to it during the second surgery. If the rectal cuff were left by itself it would atrophy and the j-pouch construction would be much more difficult if not impossible.

I had three steps and kept my rectum after the first surgery as described. The inflammation in my rectum went away and was no trouble at all for about six weeks after surgery. It did come back and I had inflammation in my rectum until it was removed in the second surgery. My symptoms were passing bloody mucus a few times per day. You have to pass mucus from the rectum no matter what (all healthy bowel tissue produces mucus and it has to come out, whether you're inflamed or not) so ultimately it didn't affect me very much -- just made me look forward to the second surgery more!

Good luck on Monday. It sounds like you have a really good mindset going into it. It's nice for some people that they're able to do two steps but it sounds like three is the right plan for you, especially to give you a chance to road test the end ileostomy. Probiotic did the same thing and decided to keep it rather than move on to a j-pouch. It's all personal preference.
Posted 6/21/2015 6:14 AM (GMT 0)
Good luck hope the surgery goes well
Please update us
Posted 6/21/2015 4:05 PM (GMT 0)
Congrats of ridding yourself of UC. I would not hesitate to make the same decision. Are you currently leaning toward the J Pouch or do you think you'll stick with the bag? Also, any advice for us on researching surgeons? How did you find yours?
Posted 6/21/2015 9:18 PM (GMT 0)
Good luck, good decision! I often wonder why people battle on for years and years before finally having surgery, it just makes sense to me when you have tried everything.
Posted 6/22/2015 5:01 PM (GMT 0)
Good luck! Hoping that all goes well. It sounded from your post like surgery was going to be today. Sending good surgery vibes!
Posted 6/26/2015 3:47 AM (GMT 0)
Checking in Happychick. I hope you're doing better.
Posted 6/26/2015 8:26 AM (GMT 0)
Well I was discharged from hospital on Wednesday because basically they don't know what to do with me. I am not an emergency situation as my bloods are now stable and my crp is going down slowly. They say I will probably need surgery eventually but this way I can make my own enquiries at my own pace in to my surgeon and where I want it done. I'm still not well- bloody diaherea and pain but only going two to three times a day so sometimes I manage 12 hours between BM and I feel ok. So just managing everything at home rather than in hospital.

Basically all meds have failed on me so it's just a matter of time before the next flare up and being in the same scenario. Meeting with one of the best surgeons to discuss whether I can have keyhole surgery as that wasn't even given to me as an option.

So basically my GI is passing the buck to another GI because he is reluctant to remove my colon in my current state even though he says I will probably have to have it in the future.
Posted 6/26/2015 12:37 PM (GMT 0)
Are you off the steroids now? If yes, that's a good sign. If no, that's not so good.

I was under the impression you were definitely going to have surgery. Don't give up on the meds just yet. Another anti-TNF may work better now that your disease is not so severe - ask about Simponi or Humira. On the other hand, if you still want to have surgery then a colorectal surgeon will probably be more enthusiastic about it than a GI: I haven't met a GI who didn't seem to want to avoid the topic of surgery at all costs.
Posted 6/26/2015 1:52 PM (GMT 0)
That's great. Whatever you decide, it will be better for you to have control of the surgeon and doing it at the time you think is right. It's good that you're feeling a little better :)
Posted 6/26/2015 2:03 PM (GMT 0)
I hope this is a good thing
Going from must need surgery right now to need surgery bit have time to research a surgeon means there is some improvement
I hope you have more improvement and are feeling ok
Also maybe update your signature so people can see what meds you tried and failed
I don't remember if you tried humira after remicade there are posters who remicade didn't work and humira or other biologics did
But if you want to go straight to surgery that is your choice
Please update us
Posted 6/26/2015 3:47 PM (GMT 0)
Wow, I wasn't expecting this at all...does this commonly happen with patients? I figured once you were booked for surgery that was it, you went in and had it. I'm sorry Happychick I can't imagine how strange that must have been for you to be all mentally prepared for it only to be turned away, not sure what to think other than I guess everything happens for some reason.
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