I think you have it covered. Except that in the first step with the rectum in place, there is a high incidence of continued proctitis in the retained rectum. Some people need to start or continue rectal medications and for some the inflammation is so bad that the time is shortened for the second step. This is because that in addition to regular proctitis, there can be diversion colitis in the retained rectum (increased inflammation due to the lack of fecal stream that feeds the mucosa).

This is no indicator of whether the j-pouch will be successful or if cuffitis will be a problem in the future, as far as I know.

Jan

Thanks Jan. That sucks - I didn't know about that. So, what are the symptoms because nothing is passing through there right? Is there urgency and blood and mucous that I may still have to need to go to the bathroom frequently? I was hoping that, even if only temporarily, I'd finally get to go out without fear of where the bathroom is after step 1. =(

I had the three step. I think when you list/consider all the negatives and positives, it is easy to think, "This is what will happen." For me, it didn't go like that. I had no anal leakage and no blockages. I did get an internal abscess in between steps two and three which meant one more surgery. So, prepare for anything, but be prepared to roll with it too.

pkitty your three steps pretty much have it covered. The loop ileo is tough to manage and leaks often until you get it figured out and causes a nasty skin rash. Between your second and third surgeries you will use you J pouch about once a day to empty out the mucus that is produced by the small intestine so do not be alarmed. You will also notice more pressure and an overall wierd feeling in your bum intil your body gets used to the pouch being there. Sounds like you are well educated and ready to go.

Mike

Kitty, I think you are asking for assurances that do not exist. Some people don't have issues with proctitis in the disconnected rectum, some do. The point is that you hope for the best, but be prepared for the worst. That way, there is no disappointment.

In all likelihood, you won't have issues with your rectum, but I sure would not bank on it, since it is fairly common. If this occurs, the symptoms may be very much like the proctitis you are having now. There can be frequent urgency and bleeding. But, since there is no stool, there will not be the volume.

You don't even know for sure that you will need a 3-step, since that was just the nurse telling you what "probably" will be advised. Don't get the cart before the horse, so to speak.

Try to focus on the recommendations of the surgeon you choose, once you decide to even go forward with the surgery. And, do you really want to travel a long distance for this surgery when you live in a region with excellent surgeons? It does not sound like your case is much different than most other people. Plus, would your insurance cover it? Lots to sort out...

Jan

You sound like you have major anxiety over this (understandably so) but you need to chill and try not to worry about the what ifs so much. Maybe you have read about complications too much on these support sites. This procedure is performed every day all over... Majority of people recover without a hitch. I did. You are not doomed for complications. I'm only saying this because I have been in your anxiety filled shoes. If you are bad off enough that you need surgery you can only go up from here. Best wishes!

Thanks guys!

Jan - I am 99% sure I will be doing the surgery and mostly in the 3 step. More than assurances, I am looking to just prepare for the worst. I want to go back to work after step 1 so I need to make a plan so trying to prepare for the worst to see if I can make an effort to go back to work, etc. with a situation where I had the rectal inflammation act up. I understand no one can tell me what will happen, but it helps to hear other's experiences. If most people who get this, only have a couple times a day where they empty mucous/blood, then it seems like no big deal that it can be worked through. And if it worse, I want to know things like - can it be controlled by suppositories and/or foams so that there isn't the type of urgency where I have to be aware of the closest bathroom all day but helps to alleviate it the point of just a couple times a day of mucous discharge? Know what I mean?

Marianne - yup, I'm def the anxious/nervous type. =(
But it helps - too have people like you, Jan and all the other wonderful, knowledgeable people on this forum share their knowledge and experience - it makes me feel more prepared and less nervous - so I owe all of you a big thank you.

Well! Kitty, that is progress, because it was not that long ago that you were still shooting for the "Hail Mary Pass" to avoid colectomy. Can't blame you, since the decision is forever once you pull the trigger!

I was like you, at least in so far as I wanted to know everything, the good, the bad and the ugly. I like to anticipate the contigencies, while not assuming I will be the one with complications. I felt that knowing what could happen helped me cope if they did happen (and yeah, I had complications). My surgeon answered every question, and he even copied the procedure from the Surgical Atlas for me to read (he might not have done that if I wasn't a nurse, I don't know).

By the time I was being rolled into the OR, I was more than ready!

As far as work between steps go, I would recommend you plan to take the maximum recommended time off. You can always return early if you want, but it could put your coworkers in a bind if you can't return as you want to because your recovery did not cooperate with you.

Jan

Haha Jan my hail marry passes all traveled a collective, whopping distance of 1 yard and then the ball deflated. No more hail marry passes that I can think of at this point.

Anyways - if anyone has any input to my post-step one (of the three step procedure) rectal inflammation complication question from above - would love to hear it.

Pkitty you will probably not have any issues with the rectum after step 1. I felt so normal after the first surgery it was amazing. after about 6 weeks you wont even realize you are wearing a "bag". After the surgery ask your surgeon what the little piece of rectum looks like that is left. He can tell you if it looks good or bad and what you can expect. The few people I know that had rectal inflamation after the first surgery just had a feeling of having to go to the bathroom fom time to time but of course can't. Sure there are good surgeons all around the country but remember the cleveland clininc performs these surgeries on a daily basis. Also you will have constant access to a nurse or nurses aid and the aids at the clinic are all college students preparing to be nurses and are awesome at their job, there is also a surgeon at the hosptital at all times as well, may just be a resident but still very knowledgable. Surgery 1 is a breeze just make sure you go on alot of walks because the only real issue you will have is trapped gas so the more you walk the better it gets. I was back to go back to work in 8 weeks but could have gone back in 6 if needed but I took the extra 2 just to be sure. Just do not get hooked on the vicotin they send you home with. They will give you enough for 2 weeks and no refills.

Mike

I had severe proctitis in my rectum after step 1, but it was not particularly debilitating. I still returned to work after six weeks, flew to a beach vacation after seven weeks, went to restaurants, on dates (and sleepovers!), to the gym, etc. At the height of the proctitis I needed to pass blood and mucus out of my rectum three or four times a day, usually in the morning and then after meals. Sometimes it was urgent but I only had "an accident" once, and it was small and at home (keep in mind at the time of my colectomy I was almost completely incontinent -- unless I took an opiate to slow my bowels, I had about a 10 second window to get to the toilet, and rarely made it. I was in adult diapers for about three months. Sorry, TMI). The other side of the severe proctitis was that I had a low grade fever on and off for about 2.5 months. Typical of a UC or UP flare of that magnitude.

To be honest, in spite of the proctitis I felt a lot better after Step 1 than I do now (post Step 2). I feel like I am not absorbing nutrients as well because of the loop ileostomy and I am more fatigued on a daily basis. It is also a much harder surgery to recover from and I can feel that my body is still healing in a much more profound way than it needed to after Step 1. It is really hard to compare the degrees of sickness among different people, and many people were very sick going into their two step procedures, but I absolutely cannot imagine having done two steps instead of three. Aside from the UP I felt really good and healthy before Step 2, and it still hit me like a freight train. I think I would have experienced some kind of complication like an abscess or worse if the surgeons had tried to create the j-pouch on me before I had time to return to health.

Jan mentioned in her post that some people have proctitis in the rectum after Step 1 that is so severe that they have to have Step 2 scheduled earlier. Although the inflammation in my rectum was pretty severe (per a pelvic MRI and pathology after Step 2), the symptoms were fairly manageable. Compared to UC it was a cakewalk. Even though I still had active inflammation I had a TON of energy because I was digesting my food and absorbing nutrients for the first time in months. I gained about 20 lb in the first 10 weeks.

Looking over your initial post, everything rings pretty true for me, except I will say that anal mucus leakage has NOT been part of my experience post Step 2. I've been really pleasantly surprised by that, especially given the degree of my incontinence pre surgery as described above. I have complete control over the mucus discharge from my pouch -- it ONLY comes out when I sit on the toilet. In the hospital I tried to "release" it on a pad in bed once (really just to see if I could... sorry, is this TMI again?) and nothing would come out. At first the sphincters only relaxed enough to release the mucus if I was also urinating at the same time, but now (10 weeks post-op) I am able to relax them and evacuate my pouch just sitting on the toilet. I pray I will have a similar experience after takedown.

I just had step 2 done about 4 weeks ago. I do have to say that this is HARD! For me anyway I think for me the big problem is that I was not fully informed of what happens. Although I sat with the Dr. at length asking question on 2 seperate visits and still the things that I am going through was not explained. I know CRAZY right. My expectations for step 3 is kinda scary just because did they negect to share anything with me involving this step, I hope not! And I pray every night that things go more smoothly than step 2 as I pray for everyone else too!