ileostomy reverse?

Hello Mickey,

I had all of my colon removed and am left with only centimeters of rectum. I had my ileostomy reversed in June, 2004. I know it is frustrating trying to find out info. on this subject. I too could not decide. My Dr. said the least I could do was try. I am glad I did it. Surgery and recovery were much easier than original surgery. True, I did have to get used to the new urge to go, but I never had any problem with control and have never had to run to find a bathroom. Learning what foods to eat and what to avoid was tricky. I think everyone is different when it comes to how long it takes to adjust. My experience was not bad. I have only been reversed for 2 years and would also be interested in long term complications or if I can expect any changes down the road.

I am glad I tried it, but if I have to go back to the ileostomy, that wil be okay also. The important thing is being here!

Wishing you the best!

Wendy

This is the first sighting (website) I have viewed discussing the healing of this organ/muscle. I had 2/3 of my rectum removed due to Rectal Cancer (Stage 2). I had my ileostomy for 2 1/2 months and had the reversal June 2005. Surgeon pulled down my colon to replace the 2/3 he had to remove. I know one thing Everyone heals differently and it is vital to keep an open mind. My Surgeon told me it would take at least a year or more for that area to understand its new function. Also post op I was on low residue diet for few months and when I introduced fiber to my body it did not understand this ..and for 2-3 months I would bloat quite a bit after eating any fiber(that is all better also.) I am presently taking laxatives every 2-3 days in order to evacuate. In the beginning I was running continually but would only go a little amount..many times a day.. Yes I have a sense of urgency but it is under control. I just had sigmoid and colonoscopy and all the tissue is healed and healthy..Also since the colon is streteched to attach to my remaining 1/3 it can be a little bit of a mismatch but via time that has become a perfect match. My surgeon is not concerned with the laxative use, because I am helping retrain that area and it will take time. I do not regret the reversal and I have healed steadily every day.

Hi Mickey,

I had my entire rectum removed along with my sigmoid colon. I had an ileostomy for about 7 months then had it reversed. Another large section of colon was removed at this time for scar tissue.

My doctors explained to me that one of the key factors in recovery is the strength of the sphincter muscles. Luckily I had a strong pelvic floor anyway, but did strengthening exercises and pilates every day to help me along.

The actual reversal surgery was a piece of cake. For the first month after surgery I had problems with bloating, incomplete evacuation and discomfort from the stretching of the j-pouch. However, after about 6 weeks, my bowel function returned to pretty much normal. I go once a day on average, take no pills or supplements at all and can eat whatever I like.

I am very glad I had the reversal done, and I think I would have tried it anyway, even if I would have had to go back to the ileostomy if it didn't work out.

Good luck with your decision.

Cal

kmac said:

This is the first sighting (website) I have viewed discussing the healing of this organ/muscle. I had 2/3 of my rectum removed due to Rectal Cancer (Stage 2). I had my ileostomy for 2 1/2 months and had the reversal June 2005. Surgeon pulled down my colon to replace the 2/3 he had to remove. I know one thing Everyone heals differently and it is vital to keep an open mind. My Surgeon told me it would take at least a year or more for that area to understand its new function. Also post op I was on low residue diet for few months and when I introduced fiber to my body it did not understand this ..and for 2-3 months I would bloat quite a bit after eating any fiber(that is all better also.) I am presently taking laxatives every 2-3 days in order to evacuate. In the beginning I was running continually but would only go a little amount..many times a day.. Yes I have a sense of urgency but it is under control. I just had sigmoid and colonoscopy and all the tissue is healed and healthy..Also since the colon is streteched to attach to my remaining 1/3 it can be a little bit of a mismatch but via time that has become a perfect match. My surgeon is not concerned with the laxative use, because I am helping retrain that area and it will take time. I do not regret the reversal and I have healed steadily every day.

Hello Kmac: I had almost same Cr like you ,had DX on nov 2004,had rad,chimo,removel of rectum and sig colon and fused with my anal,ileostomy reversal on nov 2005 ,still having pressure whwn I stand for mor than 1 hr my BM 4-10 times aday if you work how do you handel it,I am 53 and like to go back to work and play with my kids,I am taking lomotil 3-5 aday but dont want to get hock on it.what kind of high fiber you take,to balk up
this tusday I am having my 1st colonoscopy and like to know how is healing down there.
Best regards
Roub

Moesimo said:

I am jealous of everyone who had a reversal and did so well. I had my ileosomy reversal and then spent the next 18 mos. in the bathroom or looking for one. I had incontinence, constant butt burn, urgency. Life was awful. I went about 30 - 40 times a day. I lost count. I went all day and all nite, all while working full time. Sometimes my husband would wake me up because I had gone while sleepig and didn't realize it. I had all of my rectal tissue removed, my tumor was very low. I have alot of damage from radiation. So 18 mos. later I made the hardest decision of my life and had a colostomy done. Life is good now. I just started irrigating anfd life is even better. I am NED and almost 3 years from my surgey. I FINALLY feel great and have adjusted to the colostomy. My bottom doesn't hurt and I no longer am afraid to go out because of fear of an accident. I cried like a baby last nite as I watched my youngest child graduate from high school. Three years ago I never thought I would be here for the graduation. They were tears of joy.

Feel free to email me if you want any more info.

Good luck with your decision.

Maureen

Dear Maureen:
I am desperately searching for answers to my husband's question of "when will he be normal after his reversal"? He is 2 months post-op and suffering daily. He has your exact symptoms and is so frustrated with his life. He has trouble working and our business has suffered greatly. Life is awful. The doctors are not ready to discuss a permanent bag with him at this time but he feels so miserable and out of control. My husband is 49 and we have a 17 year old and a 14 year old who lead active lives. After a year of being a caregiver I am unclear as to how to help. There does not seem to be alot of help or information out there. Thanks for sharing your story!!
\Lisa