Hey JTVT, is this when someone has a j-pouch or a stoma with the rectal stump left in place? 

Much of the treatment plan will be dictated by the goals of the patient and surgeon (i.e. is the rectal stump being kept for a j-pouch or removed after making the stoma permanent). 

Rectal stump with a temporarily ileostomy but will have for a couple of years due to a variety of factors, most of which are not medically related (time off from work, other family illness, etc.)

@jtvt It will be interesting to hear from people who've experienced a long period between surgeries. 

I did come across a study that followed up on patients 10+ years after they've decided to leave their rectal stump after their initial ostomy surgery: https://pubmed.ncbi.nlm.nih.gov/23677401/

Results: One hundred eight patients underwent subtotal colectomy for ulcerative colitis during the study period: 73 for acute disease, 18 for advanced age and/or comorbidities, and 17 to avoid the risk of sexual dysfunction or infertility. Of these patients, 71 (65.7%) underwent subsequent ileal pouch-anal anastomosis, 2 died of other causes, and 3 were lost to follow-up. Of the remaining 32 patients, 20 chose rectal stump surveillance and 12 underwent elective proctectomy. Median follow-up was 13.8 years. No difference was noted in age, sex, surgical complications, pad use, or urinary dysfunction between the 2 groups. Only 8 of 20 patients in the surveillance group were compliant with follow-up endoscopy, and 13 were able to maintain their rectum; 2 required proctectomy at 11 and 16 years, respectively, for rectal cancer; neither has developed recurrent disease. One patient in each group reported erectile dysfunction.

Conclusions and relevance: Management of the retained rectum after subtotal colectomy remains an important issue even in the era of ileal pouch-anal anastomosis. Considering the risk of rectal cancer, the low success rate of long-term rectal preservation, and the safety of surgery, a more aggressive approach to early completion proctectomy seems justified in this situation.

@veganostomy

Thanks, Eric. I’m very familiar with that study and its authors ;-)

Diversion proctitis is an issue in the majority of patients retaining their stump and I have to imagine residual disease is as well for those who had rectal involvement with UC (the vast majority) though this is less clear to me. I can’t really find any good information, such as how they differ histologically or in response to treatment. The lack of studies, and by extension guidelines, on rectal stump complications and management is surprising given how common the procedure is. 

I think most can manage with topicals but wondering if any required immunosupression or if they ultimately just opted for definitive treatment with proctectomy or IPAA. We’ll see if anyone bites!

Hi JTVT.  I'm not quite what you're looking for but as it might be helpful, I'll quickly share my situation and happy to answer any questions.  I was diagnosed with UC 30 years ago and within 6 mos of diagnosis got a jpouch.  Had it up until 8 mos ago when I got an end ileo, leaving the jpouch retired but there (ie sewed up at the top).  I do have a rectal cuff.  My official diagnosis was changed to Crohns since I had developed bad fistulas/abcesses although I did not have disease in my small intestine and my personal belief is part of my problem was mechanical with the jpouch anastomosis too narrow.  Anyway, I'm very happy I had the surgery and am the healthiest I've been in many years. For now I'm trying to manage w/o a second surgery to remove the jpouch.  I discharge mucus about 2 tbsps every day or two (from the jpouch which is about in total a foot of small intestine tissue, along with the rectal cuff (which is ~1/2 inch wide).  I'm really focused on nutritious, easy to digest eating, I'm monitoring my microbiome with GI Map tests every 3 mos, and using some natural herbal antibiotics along with powdered probiotics.  I'm not on any meds. One suggestion you may already have heard about is butyrate enemas.  My surgeon told me that colon/rectal cells do get some nutrients from the stool that passes through vs the small intestine cells that get ~all nourishment from the blood supply. So colon/rectal tissue that is "in retirement" may benefit from these types of enemas to supply short chain fatty acids.  Hope some nugget in that might be of some use.  All the best.

@lynne

Thank you for the thoughtful response, Lynne. I’m having symptoms like a mini UC flare with small volume (as you said a couple of Tbs) bloody mucus  but more like 10x per day with significant urgency. I’m using topical meds but only getting modest relief. I think I’ll need to tough it out until the next surgery which will be a J-pouch. I’ve never heard of the butyrate enemas but I’ll definitely look into it. When I still had my colon I was treated with steroids and biologics and wasn’t sure if anyone’s rectal symptoms have gotten to that point. Thanks again for the suggestions and sharing your story. The thought of another surgery isn’t pleasant but these rectal symptoms are becoming a drag. 

@jtvt

I know all situations are different. This is what is going on with me. My surgical wound hasn’t healed yet after 2 years and my surgeon wants to remove my rectal stump since there is a fistula going from the rectum to the wound. I have been seeking a second opinion, because I would like to avoid the surgery if possible. 

I also am having mucus, sometimes bloody, multiple times a day, sometimes with some urgency. I had a scope last August which the GI said still showed significant Crohn’s in the rectal stump. I have been on Humira and my GI bumped me up to weekly instead of bi-weekly. I don’t notice a difference taking the Humira, but I didn’t even know I had Crohn’s before I had my colon removed. 

I don’t know if the Humira just isn’t working on me, or what is causing the mucus, but my hope is when I get in to see the doctor for my second opinion in July, they will have other things to try, rather than just resorting to surgery. I’ll let you know what happens, since it is a sort of similar situation. 👍

@squeakyandliza Liza and JTVT, wanted to just pass along one thing that I found very interesting from my health coach when my GI doc wanted to put me on Humira for possible PPG (skin issue around stoma).  My coach said before I would consider taking it, he'd suggest I get a blood test to see if my TNF alpha cytokines were even elevated.  Different biologics (I found out) target different cytokines (the parts of the immune system that can get over zealous and attack our own cells).  If that particularly cytokine isn't elevated, he said that Humira wouldn't do anything.  Since I was able to heal my skin without Humira, I have not yet had this cytokine test done, but I would consider it down the road if need be.  Here's a link in case it's of interest.  https://www.diagnosticsolutionslab.com/tests/cytodx-cytokine-response-profile

@lynne

Thank you so much for sharing this, Lynne. I’m wondering if this is the test that OHSU in Portland ordered for my second opinion. Based on the description, it sounds like it could be. When we did the phone appt back in April I mentioned that I wasn’t sure the Humira was making a difference, so hopefully they would think to do a test like this. I will hopefully be having the test this week. It is a service that comes to your house, so they just need to find a provider, according to the message they left me this morning. 

@squeakyandliza Great. At a minimum just some knowledge to help in what to ask your docs. All the best.