Considering Permanent Ileostomy and Proctocolectomy - Seeking Advice

Hi all, new to the site, first post. I have severe aggressive Crohn's all throughout along with anal fistulas and perianal disease. My doctor wants me to try the reversal - no pressure from her, I really like her - but I have been thinking about making my ileostomy permanent and getting a total proctocolectomy as well as a hysterectomy due to uterine prolapse, fibroids, and adenomyosis.

There's a lot going on in my head and I need help because the thoughts and fear of it - it's becoming all-consuming.

I know everyone is different and all that. I just have no one to talk to about this nor do I know anyone with this much illness in their life.

My reasons are:

Pain from re-establishing use of the colon, anus, and rectal area - you know, all that.

More fistulas and all that fun

More surgeries that are guaranteed

Trauma and mental strain that having consistent pain causes - like when starting to use that area again.

The downtime from the surgeries themselves

Has anyone had anything similar?

Good morning, welcome to the community. Your story is common with most of the members here. I just quickly read your profile. It sounds very similar to mine. I'm glad you're here and I'm going to comment a little bit later. I'm on the road right now, but I just wanted to say you're in the right place. Just be patient. Others like yourself will be chiming in, so don't worry. I'll get right back to you as soon as I can. Hang in there.

I'm sorry you're going through all you are. I really can't talk, hon, Crohn or things like that, so I won't. I had cancer of the rectum, which resulted in having my rectum totally removed and having a permanent colostomy. My cancer came back again, and now I've had half my vagina removed, the tumor removed, and the back wall of my pelvic area scraped, so hopefully, my cancer is gone. I'm sorry if that's TMI. I find that there's a group of people here that will provide their knowledge of what they've gone through and how they've handled it. What was good about it, bad about it—they're all amazing. I had a hysterectomy when I was 47, before all my colostomy issues, and I haven't had too much pain except from surgeries. Like now, I'm going through PT and occupational therapy nurse visits. But yeah, I do have some pain because they removed my anus, and yes, I occasionally have pain there—not every minute, sometimes randomly. Sometimes I have the urge to go poo, but I have a Barbie butt, so I can't go. And then my bag fills up, so the ghost feelings are still there. But like I said, there's a group of people here, and they'll help you out. They help me immensely. Have a good day, Linda.

Hi, not sure where you're at in MD—what hospitals you're close to… I hear that you like your surgeon, but it's never a bad idea to get a second opinion. I have an amazing colorectal surgeon who also specializes in female pelvic floor issues (for her, a hysterectomy is a last resort surgical option). She's at Cleveland Clinic, but she does do virtual consults. If you're interested in her info, let me know.

Good afternoon. I wanted to touch base with you because I reviewed your profile again, and you stated you had severe aggressive Crohn's. I don't like the sound of that, and it's nice that your physician recommends reversal. No pressure, but if you have aggressive Crohn's, I would think real hard about reversal because if you have a suppressed immune system such as I have had, it's likely you will encounter a few problems with or without your colon. So that's something to think about. I suffered

37 years. Yeah, it was no picnic on all these medications. And just this past October, I had a Ken butt, and that opened up a variety of new symptoms. So you have to understand that there will be complications, and again, no two people are the same. I think I am the oddball. I've been put through the wringer. But that's why I'm a warrior. I dance, I sing, ha ha.

Surgery and reversals and current health and age are something you have to think real hard about. It's your future. Plus, you are still young, and that helps recovery quickly.

Some of us suffer, begin at age 25. We are seniors now.

Some of us have IBD, cancer, fistulas, two bags, bladder cancer, etc. Some of us, it's life-threatening and in dire need of surgery. We may be on different ships but share the same ocean.

The people here will help you, and in regards to your question about having pain "afterwards," are you saying after the reversal or a Ken butt? You have to be specific.

Pain from your butthole is never good.

How to Manage Emotions with LeeAnne Hayden | Hollister

Thank you so much! ♡♡

Thanks everyone for the good info and kind words♡♡♡

The pain I am referring to is the rectal pain from using the anus and rectum for the first few weeks after reconnecting surgery.

And also if there is pain associated with the proctocolectomy or is it more of a void feeling like something is missing.

I've had Crohn's for 34 years now - diagnosed at 11. It took a long time to get diagnosed because of the 90s. I started with perianal disease at 17 and had 2 fistulotomies before 19. I've always been a warrior and the past 3 years with this ostomy - to say it's the most challenging time in my life is the understatement of the century lol.

I'm so grateful for the responses and any info anyone has and is willing to share♡♡♡

Ahhh... good follow-up...

You had me at "warrior". 😉

Having a Ken butt, procto... I can assure you - for me - that there are no phantoms, urges, or pains down there. I am still in the early stages of recovering and the sad part has been leaks from being sewn up down there. Two attempts done to fix it.

So there is that possibility... rare... but it happens.

Remember, surgery does not cure you of IBD. My opinion is an inflammatory issue is always present and traveling... Again, IMHO.

The other members whose poop shooter works will reply regarding pain issues.

I had severe Crohn's with anal fistulas and fissures. They were the reason I had to have a total proctocolectomy 15 years ago. That, and my large bowel was a god-awful mess. The daily blood loss was impacting every other organ in my body too, particularly the kidneys (because I also had a fistula between the bowel and bladder).

Previous to the surgery, I was on all kinds of medication that did absolutely bugger all to help, just masked the symptoms while the disease continued on its merry way. The drugs don't work (not for Crohn's disease anyway).

Since the surgery, I have had no symptoms of Crohn's, am on absolutely NO medication, and very rarely have to visit a GP (and never for anything stoma-related).

It not only gave me back my health, but it gave me back a life worth living. I wish I had it done years before I did!

Hugs Warrior, you give others strength, and still do a happy dance. Thank you for being you!

Hi Skeezal, welcome to the site. Have you consulted with a gastroenterologist and not just the surgeon? I would think a gastro might agree with you on an ileostomy, especially if there is no relief with meds.

Welcome to the site, Skeezal. I've only had my ileostomy for about 15 months. For a number of reasons, not the least of which is my age (76), I have decided my ileostomy is permanent. I also do not have any colon left. All I can say is, if I had your history, I would opt for the permanent ileostomy. However, I am not 42. That must make the decision even more difficult. However, I agree with Ron. Talk to a gastro person and see what they say.

Daniel