Rectal Stump: To Remove or Not to Remove?

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862
SpaceCowgirl
May 04, 2023 4:19 am

Today is my 10-year ostomy anniversary. I have long avoided serious consideration of reversal surgery because it's difficult to imagine my quality of life being more comfortable than it is today with a bag. I am left with a rectal stump to deal with, however, and it feels overdue for a decision. I don't presently have any issues but it has atrophied and narrowed last I had it examined 2 years ago. I was meant to have it expanded but my paperwork got lost and I have yet to reschedule. I read somewhere that you can have a surgery that leaves the anus intact. Is anyone familiar with this? As I understand, complete removal can be quite painful and long to recover from. Hoping to hear from patients who are living with their remaining bit of colon, people who have had j-pouch surgery, and those who have decided to have complete removal. Thanks for your time!

CrappyColon
May 04, 2023 4:38 am

I have an ileorectal anastomosis. If you want to Google that, it's easier than me explaining. Ask me any questions you want.

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V-SF Bay Area
May 04, 2023 5:37 am

Hi, I had everything taken out after a 24-year battle with UC. My surgery was laparoscopic so it was minimally invasive, thankfully. I experienced some pain initially and about 10 days later it was manageable with over-the-counter meds. That lasted another week to 10 days. This was in 2020 and today, no issues with the exception of occasional pressure with the feeling that I have to go to the bathroom "normally" when I have eaten too much too fast.

Good luck and feel free to reach out if you'd like more info.

Beth22
May 04, 2023 2:39 pm

Hi there,

So I had my rectal stump removed but my anus is still left. I had to have mine removed because I can't pass any mucus or stool and it would build up and cause a lot of pain and pressure. I ended up having a lot of build up... I haven't had a J-pouch but I had a total colectomy, had a loop for a little bit, and got switched to an end ileostomy.

kelly.marie.messick
May 04, 2023 6:53 pm

Hi there, I have had a J-pouch installed and then a removal of J-pouch with removal of my bootyhole and adding ileostomy. I started with UC in 1996, 13 years later I had the total removal of my colon (temp ileostomy) and the doctor created a J-pouch (2009).

I had great success for 10 years with just a couple of sleepy bowel loops every so often but nothing serious until the 10-year mark. My J-pouch failed. Sleepy bowel loops became more frequent and bloating was awful and also getting more frequent. They removed the J-pouch and gave me a permanent ileostomy in July of 2022. When my pouch failed, I was losing the ability to empty. I couldn't feel if I "had to go". I had 6 bowel obstructions at this point (from 12/19-7/22) so I told them to remove it. Boy did I NOT know the extent of this surgery. I thought it would have taken care of the bowel obstructions, but I had 2 more after the permanent ileostomy was put in. 7/22 they took out the J-pouch, sewed up my bottom, and installed the stoma. 7 months later I had another obstruction and ended up going septic because my bowel perforated. I'm 3 months post-op and doing ok. I have a couple of residual side effects and I'm not sure what my normal is anymore. I traded my stoma life for a lot of things...really painful hemorrhoids, frequent bathroom trips, URGENT bathroom trips, extreme bloating, sleepy bowel, food complex, having to fast because I feared bloating...stoma life is definitely less painful but more maintenance is needed.

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
eefyjig
May 04, 2023 7:41 pm

Hi SpaceCowgirl, I had a J-pouch that was removed after five years. I then had a permanent ostomy with rectum removed and Barbie butt. I was sore down there for several weeks, leaning to one side until things healed. Never looked back, except to regret the time with my J-pouch. If I had known then what I know now - that more surgeries are time away from work, are more scar tissue, mean lots of intestinal manipulation, that the J-pouch would be a bear to maintain, etc. - I would've stopped after my first of four surgeries, my total colectomy. But, of course, we can't know and so we depend on the advice and support of others who've been through it.

SpaceCowgirl
May 05, 2023 4:40 am
Reply to eefyjig

Thanks so much! My "gut" feeling through all my research is that a J-pouch will not be worth it, and, boy, it's hard to know without walking the walk. But with Crohn's and UC, I think I'm on the unlikely side of reversal working out well. I appreciate hearing your experience! Time off work and not knowing how long healing would take is a real source of anxiety.

eefyjig
May 05, 2023 12:41 pm
Reply to SpaceCowgirl

I tend to agree. If you have UC and Crohn's, then the rest of your intestines are compromised and your j-pouch has a harder time. I only had UC and was either having pain or anticipating it for five years. All I know is that when you are at the place where you're meant to be, there's a calm that comes over you. If you're not, there's anxiety. Sounds like you're listening to that anxiety. Go with your gut, SpaceCowgirl!

Superme
May 08, 2023 1:36 am

At the time when I had my first ileostomy, a J-pouch was an option but relatively new. What the doctor explained was I would merely be reconnected and have to wear Depends and no guarantee that a J-pouch would actually work, yet I gave it some time having a fistula bump on my belly and taking cortisone pumped into my rectum to keep it clean and to keep the swelling down. Five months later after considering the options, I decided the rectum had to go. About 13 years ago I tried getting a BCIR (an internal pouch). 2-1/2 years later I went back to an ileostomy. I had too many problems intubating. I tried to repair the pouch but after 4 surgeries, I gave up. My problems didn't end there. The surgeon who removed my internal pouch gave me a loop ileostomy. All that did was cause too much gas. It was very embarrassing to go out with it farting all the time. I went back to the doctor who gave me a BCIR and he corrected the ileostomy by removing the loop. Problem solved. No more gas. I highly recommend removal of the rectum because it can only make life worse having it. My boss had to have his rectum removed because he had cancer. Not everyone will get cancer and I pray nobody does but it is reality to have problems keeping a rectum.

Ranger
May 08, 2023 10:42 am

During my 1971 colectomy and ileostomy (to cure 10 years of UC misery), at Yale, the stump was left in because my wife and I wanted children and there was a risk the surgery could cut nerves and cause impotence. My daughter was born three years later! In 1977, I was told that I had a 100 percent chance of developing cancer in the stump, so I had it removed at U-Minnesota. This was before J-pouches. The surgery was difficult because of scar tissue that had developed, requiring reopening the abdomen. Also, bizarrely, the pathologist diagnosed Crohn's in the stump tissue, a finding the surgeon disputed. He felt that cells had mutated since the original UC diagnosis. My one problem was a parastomal hernia that incarcerated, mesh that was installed to reinforce the hernia but got infected and worked its way inside the intestine, creating an enterocutanous fistula-- requiring moving the ileostomy to the left side and removal of the mesh two years ago. In spite of it all, I know the ileostomy saved my life, and with modern convex appliances allowed a normal, adventurous life, without meds, that continues at 79. Now in my 53rd year with an ileostomy, I couldn't be happier, or healthier. Good luck to you.

Hisbiscus
May 09, 2023 4:54 am

I had a complete removal of my rectum and whole colon with end ileostomy after a 2-year trial with a temporary loop ileostomy. My decision was a given as I was in so much pain. The rectum would just throb and pain. Never looked back and happy with having it all closed up. Life is much better.

godisgreatty12345
Jun 14, 2023 10:51 am
Reply to V-SF Bay Area

You are absolutely right with what you are saying. I have a similar experience with it, but everything has changed now and not in those days where I would have to visit the restroom every time.

imsafanwa
Jun 14, 2023 9:47 pm

I don't miss it at all. Terrible hemorrhoids for 30 years, hemorrhoidectomy in 2001 and they came back. I thought the tumor was just another.

bumblebeebob9
Jul 24, 2023 8:27 pm
Reply to SpaceCowgirl

Hi Space Cowgirl. Some 58 years ago, my emergency surgery for ulcerative colitis didn't allow much time during the surgery to remove the rectal stump. Plus, I was a young man aged 21 and might want to have children someday. Six years later, the J-pouch surgery became available. My surgeon offered it to me, and I asked to speak to several of his new J-Pouch recipients. They told me about some accidents at times. I explained to my wonderful surgeon that they were fairly new ostomy patients and my anal muscle had started to atrophy after 6 years. I therefore opted not to go the "J" route, and my surgeon scraped all of the mucosal cells lining the rectum, since they would be the most likely to develop cancer when I got into my 60's. I'm now 79 years old with just slight mucosal drainage several times a day from just a small amount of cells that were missed. I still have the good ole' Stump -- but it hasn't stumped me! Had a wonderful happy life with a well-functioning ileostomy for 58 years!

Xlshrimp
Feb 20, 2024 12:10 am

I suffer from indecision regarding the stump as well. I fear the same long recovery, complications with the J-pouch, more frequent bathroom visits, amongst others. I have had some discomfort during my last 2-year scope, and there was inflammation. The gastro sent me home with a prescription for butt vitamins.

(Take one every other day or so) So to return in a month or so for another scope. The next scope was fine, and the inflammation was gone. That's my story, the moral being the butt vitamins help a lot, and I have continued them maybe indefinitely, unfortunately.

SpaceCowgirl
Mar 06, 2024 10:40 pm

Thanks again to everyone who has written a reply. I really appreciate reading all of your stories and experiences. I just got off the phone with my surgeon (post-anorectal surgery, expansion of rectal stricture). The reconstruction did not go well as the stricture 5 cm up was too tight to expand. My surgeon recommends removal of the rectal stump in the next year or two, as a pouch is not a viable option. This is what I was expecting and leaning towards anyway. I was just reading about possible complications and nerve damage to the bladder and sexual function. I'm not sure how common that is. I've included a screenshot from the medical journal I was reading. This is a male's anatomy, however, but it looks like a complex amount of nerves are attached to the rectum. For those of you who have had complete rectal stump removal, how was the recovery and life thereafter? Any complications? It sounded to me also that this procedure will be done laparoscopically through the abdomen? I thought it would be simpler than that. Thanks, everyone.

dubber365
Apr 26, 2024 6:52 am
Reply to kelly.marie.messick

I had removal of large colon. Now ileostomy. Doc wants me to have rectum and rectal stump removed. It sounds so painful.

eefyjig
Apr 26, 2024 12:39 pm

No complications. Very happy.