Colostomy Reversal with Temporary Ileostomy Experience?

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clair.crowley83

I've had a colostomy since November after emergency surgery on a bowel perforation.

I hope to have my colostomy reversal in May/June, and my doctor says I will require a temporary ileostomy (minimum 2 weeks) as part of the reversal.

Do any of you have experience with this type of reversal? I've tried to find information online but my searches are turning up anything. Maybe the procedure has a weird medical name that I'm not aware of?

Thanks, guys!

Renfromtexas

Is it called anterior resection instead? Call your surgeon and ask.

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clair.crowley83

Hi Renfromtexas,

I think an anterior resection is a rectum removal? Maybe I'm wrong though.

Unfortunately I don't have a contact for my surgeon because my original surgery was gynecology (bowel endometriosis), and I've now been passed on to the general surgeon.

Ben38

Ileostomy Internal Pouch Support Association. They can help with reversal information. It might be worth contacting if you Google their name. You will find contact details for them in Ireland and their Freephone helpline number.

gentlejohn

I do not know all the details of your medical history and anatomy. Assuming your perforation was from diverticulitis and your rectum is intact, if it were me, I would get a second opinion regarding the temporary ileostomy. Is your surgeon a general surgeon or a colon and rectal surgeon?

 
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clair.crowley83

Hi Gentlejohn,

Let me fill you in a bit about my medical history. I've had endometriosis for 20 years, and the lesions have become deep infiltrating in my large intestine for the last 8 years. I had surgery in November to remove 30cm of my large intestine due to these lesions. Following the surgery, my bowel ruptured and I suffered peritonitis and sepsis. They performed emergency surgery which resulted in a descending colostomy. My rectum remains intact.

I wasn't at all prepared for a stoma, so I'm much more uneducated in the matter than I would like to be. Also, I'm Irish (English speaking) but I live in Germany and still have some difficulties expressing myself in my 2nd language, especially when it comes to medical terms, so sometimes I miss things when speaking to doctors.

The reason I am asking here if anybody has experience of this procedure is because I am worried that perhaps you're right and I should seek a second opinion, as I haven't been able to find any information at all about the procedure.

It feels so strange to blindly follow the surgeon's instincts.

putt putt

Hello Clair

I seem to be in a similar situation. Invasive endometriosis, bowel perforation, and sepsis after an OB/GYN surgery. Admitted to the hospital for the emergency surprise colostomy a week later. After enjoying a prolonged 60-day hospital stay due to unforeseen random circumstances, it took my body forever (19 months) to heal enough to be eligible for the colostomy reversal surgery.

While signing the surgery consent form on Dec 15, 2022, I was informed that a loop ileostomy could possibly be performed if necessary, but was told it wasn't likely. Well, my unforeseen random luck held out, and I woke up with the loop ileostomy. It makes sense though because the new colon junction needs time to heal before being put to use since it had suffered so much damage - I guess from the endometriosis. That's my summary anyway, and my surgeon said it needed about 6 weeks. The good news is the loop ileostomy would be much easier to reverse than the original colostomy because it could be done laparoscopically.

I'm tentatively scheduled for the ileostomy reversal next week, but of course I have to have something else taken care of first. But you know - in a textbook case I'm sure it's quite a smooth process. Maybe your surgeon is just preparing you better for that possibility (which maybe is more of a probability with endometriosis patients - I don't know.) I'm still optimistic although it's been a loooong journey.

I wish you well!

clair.crowley83

Hi Putt Putt,

Wow, how crazy that we have such a similar situation! You're the first person I've found whose stoma is due to endometriosis (or unfortunate circumstances surrounding endometriosis). Maybe I'll start another thread to see how many of us are using this forum.

Thanks so much for giving me some information on your experience. It sounds like exactly what they plan for my reversal, but for me it's not a possibility but a definite. At least no more surprises to wake up to.

I hope your upcoming surgery is quick and easy and that you recover well. I'd be really grateful if you would keep me up to date.

Clair

gentlejohn

Colon perforation from endometriosis is extremely rare. I suspect your surgeon was protecting his colon anastomosis with a loop ileostomy. Doing that is the surgeon's judgment depending upon difficulties encountered at the time of surgery.

Renfromtexas
Reply to clair.crowley83

I went from an emergency situation in which my surgery was given by a bariatric surgeon to now a general surgeon to do my reversal. Finally on the 15th of February.

putt putt
Reply to gentlejohn

Thanks for mentioning the anastomosis. My surgeon was definitely protecting that - he said it was like sewing tissue paper when he did it!

The anastomosis now, however, was the issue I had to have checked out before proceeding with the reversal surgery this week. The barium enema exam I had last week indicated a narrow anastomosis, but the scope I had today by my surgeon showed it is fine (I hope so!), and I will be having the reversal surgery Thursday.

crappycolondiaries
Reply to clair.crowley83

Can you request an interpreter to be there?

clair.crowley83
Reply to crappycolondiaries

That's a good suggestion, they won't supply an interpreter, but I could hire one to come to the next meeting with the general surgeon.

I speak German pretty fluently, so I've always done the meetings alone, but I've never been satisfied with my level of understanding when it comes to medical terms.

clair.crowley83
Reply to putt putt

Good luck tomorrow!

clair.crowley83
Reply to Renfromtexas

I've never heard of bariatric surgery, what is that?

Good luck next week, Ren!

Daughter

Hi,

My mom is considering having a colostomy reversal. We went to seek advice from a colon and rectal surgeon that was highly recommended by someone who got her colostomy reversed. While my mom's situation is different than yours in that the ileostomy was not presented as a definite course of action, the surgeon explained to us that it's possible to need an ileostomy. If I am understanding everything correctly, she said if it's a difficult dissection and there's a lot of scarring, my mom would need a temporary ileostomy bag. If everything comes together nicely and there's not a lot of scarring, then she wouldn't need an ileostomy bag.

My mom is really scared about the whole process and probably not going to proceed with the colostomy reversal but we do have a second consultation in a couple of weeks.

I wish you the best of luck.

putt putt
Reply to clair.crowley83

Hello Clair

Thanks for the well wishes. Sorry for the delay in posting a follow-up. I am 3 weeks post loop ileostomy reversal surgery.

My recovery this time has definitely been my easiest from any of my previous bowel surgeries. No midline opening and wound vac, not even laparoscopic incisions to heal. They did everything through the stoma opening. There is just one open hole that needs to be packed with one piece of gauze and changed twice a day. I only took Tylenol and Gabapentin for about 2 weeks. The hole is much shallower now – should be completely healed soon.

(A little side story - because of my history of waking up from surgery to surprises, this last surgery when I really woke up (not just in a medicated state) and was alone during the night I thought to myself, "Wow! I won't have a bag attached to my stomach!" So I reached down and was surprised to feel a crinkly plastic bag, but it was just one of those hospital ice bags with four appendage-looking ties on it that my family fondly refers to as an ice nurse. Haha! The ice had melted so that the bag was the same consistency as a full ileostomy bag. Kinda freaked me out for a second!)

I feel like I'm operating pretty close to how I was before my emergency colostomy. I still have most of my colon and rectum. Mentally, it's weird not having "a window to my bowel," and more than a few times, especially early on, I wondered "What would Herbie (my stoma) be doing now?" I had a couple of days - including hospital time and home time - of diarrhea, but no urgent accidents. I transitioned through a very soft stool period and then to a painful hard stool period, most likely from not drinking enough water, to a current more comfortable experience. It seems to be a never-ending quest to achieve the perfect output! I'm pooping more often than I did in my previous life where I now realize I was a literally anal retentive person!

After 21 months as an ostomate - with a colostomy and later an ileostomy - so far I am happy with the sort of Factory Reset surgery I've had. I feel like I'm in a bit of a hypochondriac state because of various complications I went through. I'm trying to find the balance between "just watch it and see" and "why didn't you say something sooner?" I'm going to increase my activity this week because I feel like I've been sitting around way too much worrying about things. My greatest health worries are fistulas and fluid collections, so I'm just hoping and praying that things go well. I have a follow-up with my surgeon next week, so I'm glad to have an opportunity to ask more questions. I know not all reversals last forever. I chose to go through with mine after reading one ostomate's account of a reversal that gave her 7 ostomy-free years which she did not regret. I will try to continue to appreciate the benefits of whatever my current state of health is.

I am so grateful for the support I've found from reading posts on this site. I've found many answers to questions and solutions to problems. This is a healing community for me – physically and emotionally!

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