My ileo reversal/takedown experience thus far

[Ann Clare]

(**I posted this on the General board as well, since that one gets more traffic**)

I had my ileostomy reversed last Thursday, after 8 months, 6 of which I was in chemo. I"m happy to say that all went well. The procedure took 45 minutes & my surgeon said everything looked great - no adhesions, no complications. And unlike my first surgery, I didn't have to have a catheter for this one - yay. (One less thing to create post-op issues.) I was able to "go" late Friday night and have had control with each BM. I was given an Rx for Percocet, but didn't have it filled as I'm not in pain. Plus fewer pain meds = less chance of constipation. A home health nurse came out today to change my dressing as the surface wound was not stitched shut, as my surgeon said this often leads to abscesses and infection. The wound has to heal from the bottom up. The home health nurse said everything looked great and just as it should. Due to my age & overall good health, she said I should heal rather quickly. Here's hoping!

Just like my first surgery, walking is encouraged to get/keep things moving & speed healing. I like walking so this is not a problem for me.

I'm on the standard 'low-residue, low-fiber' diet for a few weeks and am not to lift anything over 10# for at least 6 weeks. Overall I feel pretty good. Energy is up, I slept well last night in my own bed, and so far have not had any pain when using the bathroom. I can tell when I have to go and have not had any problems getting there in time.

I have a home health nurse who comes every morning to change my dressing. My surgeon didn't stitch the surface closed - she said it has to heal from the bottom up to avoid an abscess & infection. I look like a gunshot victim right now!

I just wanted to provide this info for those who are facing, or will face, a reversal. I know there are some not-so-great experiences out there, but I hope that my story will give some comfort and solace to those who might be nervous about undergoing this procedure.

If anyone has any specific or personal questions, please feel free to PM me. Fear not - nothing is TMI to me. I'm here and happy to help in any way possible.

[marylandmaniac]

Thank you for posting this. I am 47 and have a great colorectal surgeon. I had my resection Dec 14th and have a temp ileo. My concern has been what will happen when it is reversed as I see so many people report that they have issues. SO glad that your takedown went well and it gives me hope.

[Ali_K1125]

I am 29 and am having this surgery to end my battle with Ulcerative Colitis. I have had 2 surgeries already. Last was 2 months ago and was the loop ileostomy where they created the j pouch. After a recent test, results showed no leaks and am healing well and ready for the resectionand reversal. I am excited to get rid of the bag finally but am nervous as well.
I was wondering if you've had any problems with the urgency to go/holding it when necessary. Also, how many times a day do you go? And are you able to sleep better without the bag waking you up to go to the bathroom all night?
I am a teacher and because of that I can't leave my classroom to go to the bathroom whenever I want to. I am supposed to go back to work right when my 4 weeks post op is up. I am nervous I'll have complications with getting used to going "normally" again.
Anything you could share about your experience would be helpful.

[rmcknight923]

Thank you for posting this. I am 47 and have a great colorectal surgeon. I had my resection Dec 14th and have a temp ileo. My concern has been what will happen when it is reversed as I see so many people report that they have issues. SO glad that your takedown went well and it gives me hope.

Would you mind expanding on your experience with the ileostomy? Any hints/tips? What was it like when you woke from surgery?

[rmcknight923]

(**I posted this on the General board as well, since that one gets more traffic**)

I had my ileostomy reversed last Thursday, after 8 months, 6 of which I was in chemo. I"m happy to say that all went well. The procedure took 45 minutes & my surgeon said everything looked great - no adhesions, no complications. And unlike my first surgery, I didn't have to have a catheter for this one - yay. (One less thing to create post-op issues.) I was able to "go" late Friday night and have had control with each BM. I was given an Rx for Percocet, but didn't have it filled as I'm not in pain. Plus fewer pain meds = less chance of constipation. A home health nurse came out today to change my dressing as the surface wound was not stitched shut, as my surgeon said this often leads to abscesses and infection. The wound has to heal from the bottom up. The home health nurse said everything looked great and just as it should. Due to my age & overall good health, she said I should heal rather quickly. Here's hoping!

Just like my first surgery, walking is encouraged to get/keep things moving & speed healing. I like walking so this is not a problem for me.

I'm on the standard 'low-residue, low-fiber' diet for a few weeks and am not to lift anything over 10# for at least 6 weeks. Overall I feel pretty good. Energy is up, I slept well last night in my own bed, and so far have not had any pain when using the bathroom. I can tell when I have to go and have not had any problems getting there in time.

I have a home health nurse who comes every morning to change my dressing. My surgeon didn't stitch the surface closed - she said it has to heal from the bottom up to avoid an abscess & infection. I look like a gunshot victim right now!

I just wanted to provide this info for those who are facing, or will face, a reversal. I know there are some not-so-great experiences out there, but I hope that my story will give some comfort and solace to those who might be nervous about undergoing this procedure.

If anyone has any specific or personal questions, please feel free to PM me. Fear not - nothing is TMI to me. I'm here and happy to help in any way possible.

I'm so happy this is behind you and went well. May I ask your age? Any hints/tips on living with the ileostomy? What was it like when you woke from surgery?

[rmcknight923]

I am 29 and am having this surgery to end my battle with Ulcerative Colitis. I have had 2 surgeries already. Last was 2 months ago and was the loop ileostomy where they created the j pouch. After a recent test, results showed no leaks and am healing well and ready for the resectionand reversal. I am excited to get rid of the bag finally but am nervous as well.
I was wondering if you've had any problems with the urgency to go/holding it when necessary. Also, how many times a day do you go? And are you able to sleep better without the bag waking you up to go to the bathroom all night?
I am a teacher and because of that I can't leave my classroom to go to the bathroom whenever I want to. I am supposed to go back to work right when my 4 weeks post op is up. I am nervous I'll have complications with getting used to going "normally" again.
Anything you could share about your experience would be helpful.

Sounds like you are on your way to being free from pain--Yay! I am having my ileostomy tomorrow so a retrovaginal fistular can heal. I am nervous about ALL of it!

[Ann Clare]

From what I recall, I had strong urges to go for the first 1 -2 weeks post-op, but never experienced any accidents. I was able to "hold it" quite well from the get-go.

For the record, I'm 42 and, cancer notwithstanding, am in excellent health.
Also, for a few months prior to my reversal, I would do Kegels to strengthen the anal sphincter muscle back there, since it hadn't had to do any work for 9 months or so while I had the ostomy.

Sleep wise - I rarely had issues with my pouch during the night. Occasionally I'd have to get up to empty it, and there was a weekend when I had 'blow outs,' (which I believe were chemo-related - damn poison!). Post-reversal I was able to sleep quite well through the night once I was home. (Can't sleep in the hospital because they wake you every 2 hours to check your BP and temperature.) I was reversed on a Thursday a.m. and was released two days later, so it was a much shorter stay than the initial surgery.

When I woke from the surgery (with the pouch) I was quite groggy. My procedure was longer than most because I wasn't just getting the ostomy - they were removing a tumor, lymph nodes, as well as my ovaries & fallopian tubes. I have to admit I was a bit down, having to cope with the pouch AND knowing I'd be going through chemo in about a month.

I'm a massage therapist and was SO worried to return to work. I went back for light-duty only (no massaging, in other words - just answering phones, doing laundry, etc.) a week after my surgery and resumed seeing clients one month post-op. Thankfully I never once had to excuse myself during a session to go to the loo. There were moments (and still are) when I can tell I have to go, but holding it is not an issue, thankfully.

As far as tips for living with the ostomy, I wish I could be of more help. The main board here is full of many amazing folks who can provide tips in that regard. For me personally, it was as much of a mental and emotional burden as it was physical. I was going through chemo while I had it, which brought its own set of emotional trauma issues. What helped me was reminding myself that it was temporary. Once my reversal surgery date was set, I literally counted down the days and number of pouches I'd need.

If I failed to answer any questions, please PM me and I'll be happy to help.

[rmcknight923]

You're awesome! I can't imagine the fortitude it took to get through that recovery time. I'm so thankful you are on the other side of this ordeal! Thank you for your insight.

[Cheryl22]

Our story, my husband had to have emergency surgery on July 4, 2017 because his colon was about to rupture and he had a mass on the left side also. We were on vacation in northern Wisconsin. He had only one episode of diverticulitis the previous December. He had a colostomy after the surgery and stayed in hospital for one week and we went to our friends house and the next day the cooon ruptured again and more was removed leaving him with an illeostomy. When we got home we had to find a colorectal surgeon to perform the reversal. The reversal surgery was nov 15th and dr said no colon was left so he has a loop illeostomy for three more months. Two weeks later he had two abscesses which involves two drains, one out after about a month other took two months. It was out for about three weeks and now abscesses are back. We were almost ready for final gastric enigma scan to ensure no leaks and final closure. Looks like now we have to deal with leaks for a bit. Very frustrating, mentally and physically! I am new to this forum but have enjoyed reading issues other people seem to have as well. We have changed the bag as many as 4 times in one day and have learned every trick in the trade seems like. Any feedback if anyone else might have had these problems in the past would be greatly appreciated. Still scared for him and final outcome. The stories about final procedures aren’t very encouraging. Any help I can give anyone else please just ask. Thanks again for letting me vent.

[Dalhow]

I am 29 and am having this surgery to end my battle with Ulcerative Colitis. I have had 2 surgeries already. Last was 2 months ago and was the loop ileostomy where they created the j pouch. After a recent test, results showed no leaks and am healing well and ready for the resectionand reversal. I am excited to get rid of the bag finally but am nervous as well.
I was wondering if you've had any problems with the urgency to go/holding it when necessary. Also, how many times a day do you go? And are you able to sleep better without the bag waking you up to go to the bathroom all night?
I am a teacher and because of that I can't leave my classroom to go to the bathroom whenever I want to. I am supposed to go back to work right when my 4 weeks post op is up. I am nervous I'll have complications with getting used to going "normally" again.
Anything you could share about your experience would be helpful.

Hi there, do you have any updates? My husband is in the exact same boat. He just had his takedown surgery (but has an s pouch) in April and having a tough time. He had everything checked out and everything is ok, no leaks or anything, but the frequency of going is a lot and depression is getting to him...how long did it take you to get back to normalcy?

[Unhappytummy]

Ann Clare. I have just had Iliostomy reversal and I would love to ask you some questions. I had the Iliostomy for 3 months because of diverticulitis. I managed bag very well. Had my reversal 9 days ago. In hospital for a week. Quite a bit of nausea. Had a
Loose bowel,motion in there and a small one ( no pain) so they let me home. Nothing much since then. Yesterday my bowel came to life and it was a miserable experience. Went about 7 times ( very painful) Not loose but hard, and the gas pains have been excruciating. I've just woken up to another day and wondering what it will bring! I'm worried about the nausea too because I couldn't eat much yesterday at all. I don't want that to continue. I'm hoping it will all settle down. I am on a small amount of pain meds but surgeon said it was such a small amount it wouldn't make me constipated, I can only tolerate small amounts of strong pain meds. Have you got any ideas? You had a successful takedown, so I wonder if we're just all different? . So pleased if I could hear from you , quite desperate .

[Button]

Unhappytummy:
I know Ann Clare from shared personal messages.

I am saddened to tell you that Ann Clare passed away from rectal cancer with metastatis to the brain a few months ago.

Ann Clare was one-of-a-kind. She had a truly infectious personality and a kind heart.

I have been absent from this forum for several months and did not often visit this temporary ostomy/reversal section. I do not why I click on this thread. Maybe Ann Clare wanted me to see your question and not leave you dangling.

A wonderful resource and active forum for young individuals with colon-rectal cancer (under the age of 70) is the Colon Club. Ann Clare was a member and poster on the Colon Club. The Colon Club would give you a welcoming community of individuals at all stages of treatment and after care. Discussions of post-reversal bowel control and LAR syndrome are ongoing.

Google: Colon Club

www.colonclub.com

In loving memory of Ann Clare,
Karen