Skip to main content

23 replies

A More Complicated Choice

T Tornado6Member
I have, I guess, an interesting case of IBD. Being sick is not how I planned to excite the med school students.

My initial colonoscopy in May 2011 showed inflamation in the cecum. The terminal ileum was ok. The biopsies showed colitis, but the doctor I was seeing at the time also ordered a Prometheus blood test that showed no IBD markers, so I did not get a diagnosis.

My second colonoscopy / CT Scan showed pancolitis. The biopsies showed colitis.

My third colonoscopy was to prepare a very good biopsy collection for the colorectal surgeon. All biopsies showed quiescent colitis, except for two strictures that are actively inflamed. The terminal ileum was ok, but the biopsies actually say "mild architectural disarray". I had a positive hydrogen breath test a few years ago, so I think I may have had some backwash, but nothing indicated Crohn's.

I have had colitis, colitis, colitis, colitis - and nothing to indicate Crohn's, but the two large bowel strictures. They are not "never" found in UC, but they are rare.



So yesterday, while talking to my doctor about surgery, she said that I could be a candidate for a resection. She did not say, "You have Crohn's colitis." She held her hands apart and said if IDB is Crohn's (left hand) and UC (right hand), I think you're somewhere here. (right side of middle.)"

This has blown my mind. She did not say that I am not a candidate for a j-pouch. She said I could choose which path I wanted to take. With the resection I will have to be on medication forever. It may not always be Remicade, as new drugs are sent through the pipeline. It opens up more options with Crohn's drugs. However, if the drugs fail, I will not be a candidate for a j-pouch because of scar tissue, so it will be an end ileo. Period.

I have a chance of getting off of meds if I choose the j-pouch route and the pathology confirms UC, and I don't develop symptoms later. This seems like a bigger if now than it was earlier this week. I really think that with the number of biopsies I've had showing colitis, colitis, colitis, that I will probably be OK, but it is new and terrifying territory.


I've been researching the end result of the surgery, a functioning pouch, all this time. What happens if they find Crohn's after the colectomy? Have any of you had Crohn's colitis and a successful j-pouch? What else should I be asking?
Original Post

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
The main risk of having a j-pouch with Crohn's disease is that you have a higher failure risk. It increases from about 5-20% to about 40-50%. There are a number of folks with Crohn's colitis who did well with their j-pouch. Most people with Crohn's and a failed j-pouch are those who developed small bowel Crohn's or Crohn's of the j-pouch at some point after surgery. These are sometimes referred to as "converters," but the reality is that you had the same genetic predisposition as you always had. What changes is the gut environment, your age, and various triggers you might encounter as time goes on.

I suppose all of us face the same risk, but if you know in advance that you have Crohn's, that adds to the risk. It is a similar risk as those with indeterminate colitis.

If it were me, I would not consider a subtotal colectomy and ileorectal anastomosis unless there was clear rectal sparing (not due to topical medications). Enough people with indeterminate or Crohn's colitis have had good outcomes with the j-pouch that I would lean in that direction. However, I am not sure that it is correct to say that rectum sparing surgery would mean that you could not have a j-pouch in the future. A number of folks here who had an ileorectal anastomosis went on to have their rectum removed and a j-pouch created. Yes, there is scar tissue, but that is not a deal breaker. So, if this was your surgeon saying this, as opposed to your GI, I would most definitely get another opinion, especially if you were leaning toward the resection, but wanted to have the option for a future j-pouch.

In regard to medication, don't let that be the reason for your decision, at least not the major one. Many of us, including myself, are still on the same medications or more (myself) than we were on prior to our colectomy. Maybe not for colitis, but for other autoimmune disease that continued or started after colectomy.

So, think more in regard of quality of life.

Jan Smiler
T Tornado6Member
I think the surgery he'd do for the resection is LAR/CAA - low anterior resection with colorectal anastomosis based on the picture she drew yesterday. I have not confirmed the terminology with the surgeon yet, but I know he and my IBD specialist have already talked about it. The distal stricture is in the rectosigmoid juncture, and he has to go below it, so they think the scarring will just be too low for the j-pouch to be a future option. I have not been on any topical medication since November, before my scope, so they should have an accurate picture of the area.


As far as quality of life, I think it may be worse after surgery, which is why I've been waiting for so long. Except for the strictures, my colon is in great shape. The strictures cause a lot of gas and bloating. Remicade may be causing my fatigue. I am not anemic, and my thyroid is just fine. My surgeon does not know for sure if surgery will resolve either of these issues. I know I'll be in the bathroom more with a j-pouch, but I know it isn't the same as a pre-UC or UC bathroom trip. I feel better now than I have since diagnosis.
ElmerFuddElmerFuddMember
Tornado6, I see you are in St. Louis, and judging by the fact your surgeon is a "she" I'm guessing you are with the most highly thought-of surgeon there in St. Louis for j-pouches. If you want a second opinion and don't mind the drive to KC, my surgeon here is the best in the region, hands-down. Not sure she would tell you any differently - but she might.

Steve
Jan DollarJan DollarModerator, RN, retired
Hmmmm...Have not heard of NOT doing a total colectomy in the presence of UC or Crohn's colitis. Sparing the rectum, yes. The only time I have heard of doing a subtotal colectomy is in the case of an emergency. Since you were diagnosed with pancolitis, I do not see the point of the subtotal. Even if it is in remission now, the fact there was pancolitis at any time, means pancolitis. Subtotal colectomy just is not in the accepted protocol:
http://www.fascrs.org/physicia.../ulcerative_colitis/

I would not risk the resection. Either stick with what you are doing, or go for total colectomy, unless there is something you are not telling us or if they think this may not be IBD at all...

Jan Smiler
T Tornado6Member
I know. It isn't done. It hasn't been done for about as long as I've been alive. That's why it sort of splintered my world when she said it.

It sounds like a cancer surgery, because that is the problem with the strictures - eventual and fast moving cancer.

I'll have to ask more about the scar tissue - maybe it is from the way the procedure is done and the circular stapler instead of the location of the stricture.
A ActiveUC'erMember
Is the goal of the surgery to manage your strictures or to manage your colitis (regardless if it's UC or Crohn's Colitis)?

If it's the strictures that are making your quality of life miserable (or will make you miserable with a high likelyhood) I can see them doing partial colectomy just to get rid of those and controlling the rest with just medication.

Have you asked the question why they would do a subtotal as opposed to a total colectomy? You could even mention that it's weird from what you are reading. You you can ask these questions just because you want to understand more, not because you mistrust what they are saying.
mgmt10mgmt10Member
This seems really confusing. If you have UC I can't see it being anything other than a total colectomy with either a permanent ileostomy or a j pouch.....which ever one you would decide on. If you have CD then that's another story. Resections are done for that but I never heard of a resection on a UC patient. I suppose there are always exceptions to that rule but a resection would make me very nervous about future issues. And especially since you mentioned the ct scan showed pancolitis.
T Tornado6Member
The surgery is to get the strictures out. My disease is well managed with the drugs I am on now, but I was steroid dependent and facing surgery when I was sent to this doctor. Less than a year ago! I've never been 'in remission', but minus these two areas I would be now. The rest of the biopsies showed quiescent colitis.

I'm not really miserable most days, except when I overdo it and wear myself out. I'm rarely bathroom miserable these days. I guess I would be pretty unhappy if I got cancer, and I'd have to take even worse meds than I'm on now.

I know it is confusing. I'm really at a loss. I wish I could un-hear it.
Scott FScott FMember
I've lived with the uncertainty of Indeterminate IBD for quite a while. I had to consult with three surgeons in three cities before I found one comfortable with making my J-pouch. It turned out very well for me, though it doesn't always go well. I can see why the resections are tempting, but it strikes me that if they aren't Chrohn's then perhaps they are suggestive of a nasty enough variety of UC that it might not leave you alone in the future. I only had disease in a small portion of my colon, but even my optimistic surgeon couldn't offer any evidence in support of the resection idea I floated at the time.
Last edited by Scott F
Jan DollarJan DollarModerator, RN, retired
It does make sense that if your real issue (at this point) is the strictures, then a resection seems reasonable. However, since these strictures are IBD related, I would still think that the total colectomy would be the wiser choice, particularly if you are being told that the resection would limit your future options. Obviously, the resection would not cure your IBD, you would still need surveillance colonoscopies, and you would still need maintenance medication. Of course, even with a j-pouch you would still need endoscopic surveillance, but it is more like a very short sigmoidoscopy, not the hugely invasive colonoscopy.

One other thing I thought about was the possibility of balloon dilation of these strictures. That would seem preferable to resection. At least, it is something to discuss.
http://gut.bmj.com/content/60/Suppl_1/A221.2.abstract

Jan Smiler
T Tornado6Member
!!! That is what isn't in this thread. The strictures are two areas of circumferential ulceration with narrowing, mostly scar tissue according to the pathology report, no dysplasia. The tissue between them is friable. My doctor had to use the balloon in order to get the scope through, but couldn't do any more because of the friable tissue. I bled a lot after this scope. Like a crime scene. I had to throw away the socks I was wearing.

Until we talked yesterday, I was scheduled for a two step j-pouch. I can't imagine she'd let me go that route if it wasn't most likely OK for me to do. I think I'm leaning that way today. This has been a rough week.
T Tornado6Member
I think I've decided. I've been thinking & praying since Tuesday.

I am not having surgery on February 21st. I'm going to call to cancel that tomorrow.

I am not going to try the resection. It is tempting, but there is no chance I'll be off of meds, and I won't have many options if the meds stop working for me.

I am going to try to wait it out until summer. My son is graduating on June 5th, and the kids I teach have their state competition that weekend. I'm going to try to keep to lower residue and less gassy foods until then. I'll probably only have two more Remicade infusions, maybe three if they make me take the last one in June.

I really think that they have as much information as they can have now about my diagnosis. Odds are in my favor that the post-colectomy pathology will show UC.

I am still terrified of my post-colon life. I am pretty sure that my QOL after surgery will be worse than it is now. I am hoping that I'll have time t turn that around, because attitude does make all the difference.
A ActiveUC'erMember
What does "wait it out until summer" mean? That you will have surgery then?

FWIW, the other day I was trying to remember if I had an ostomy during a big/memorable event. It really took alot of thinking and it broke down to figuring out the dates of things occurring (when was my surgery versus when the event was). Granted, I've had more than my fair share of complications but post-colon life will likely be the same as pre-colon life.
T Tornado6Member
Yes, I'll try for a j-pouch this summer. I don't care if I have an ostomy during an event. There will still be events after June 5th, of course. I really don't want to cause the disruption during his senior year. I know that graduation isn't a magical date when he will be a grown up and I'll no longer be a parent, but it is a psychological milestone. Especially since I still have a single-parent mentality even though I am remarried. I've never been able to shake the 'have to do it all myself' feeling entirely. His graduation has been a major goal of mine since way, way before I had UC.
mgmt10mgmt10Member
Good luck with everything. I had my surgery in the summer time and it was probably smart that I did it that time of year. Having it done in the winter probably would have made me lose my mind not being able to enjoy going outside and the warm sunshine. It's small things like a nice, sunny day that boost your moral after surgery.

I understand about your son. It's a huge milestone. Take care of yourself!
A ActiveUC'erMember
Oops, sorry...I was just using the "big event" thing as a marker on whether my ostomy interfered with anything..not that having my ostomy was a bad thing.

I don't have a kid, but I can definitely understand where you are coming from with wanting him to live out the rest of his high school year without interruption. I hope you have relatively good health until the time comes!
T Tornado6Member
Interesting! My surgery won't be done at the main downtown hospital. I wonder if the residents are spread out over the whole system, or if they stay downtown? My surgeon said the satellite I'm going to is a lot nicer to be admitted in than the 'factory' downtown.

He was Chief Resident in 2008. Haha, every time I see that I feel like I've been wasting my life. Both he and my IBD Specialst are just about my age. Ahhhh, when did doctors get young?!?
P PluotMember
I would just ask him or his nurse straight up. I had my takedown in July and I asked the nurse. She said it didn't really matter that the new residents would be in the hospital, because I would only be seen by my surgeon and his chief resident, and that was how it shook out.

I suppose it depends on the size of the hospital, how many CR procedures they do, etc, but I got the feeling when I was there that they considered my procedure more "advanced" and the only inexperienced staff who ever worked on me were a class of first year med students who practiced neuro exams on me (I was bored, they needed volunteers Smiler).
A ActiveUC'erMember
Tornado - I had a similar reaction with one of my surgeons. She's only three years older than me and I'm still finishing up my Ph. D.! It's like, what am I doing with myself. Inevitably my mom or someone answers "being sick" - thanks.

I have had fellows/residents on my case before at Cleveland Clinic. When I was a more complicated case (I was hospitalized for two months...nothing to do with a jpouch screw-up), I was passed from one surgeon to another when my first surgeon went on a month-long vacation. When I was a simpler case during another hospitalization, I was handed off to a Fellow when my surgeon went to a conference or something (A Fellow is somebody who went through medical school then residency for four years and was having even more advanced training as a C-R surgeon specifically). I think if I had turned more complex during that stay, I would have been handed "up" to another of the regular surgeons. I had residents visit me in the mornings just to see how things were going (waaayyy too early in the morning) but I would see my surgeon on a regular basis.

The surgeon you sign up with will be in the operating room and be in charge of your care. You might encounter residents/etc. but everything falls onto your surgeon. And that's if you are even at a teaching facility. Not every facility is a teaching facility so you might be in luck!

Add Reply

Views: 549
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×