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Ileostomy reversal

steved
Posts: 835
Joined: Apr 2004

Finally got my date to go in for my ileostomy reversal on the 13th of May (background: Stage 3 rectal cancer diagnosed March 2004, preop chemoradiotherapy, anterior resection with temp ileostomy, post op chemo for six months and now reversal).

Looking for general advise and other's experience of this op. The op itsself is fairly minor but I understand it can take a long time for the bowel to be retrained into functioning properly. I had a very low down cancer and the rectum they reconstructed doesn't have a huge capacity so I am expecting some urgency and frequency of motions after the op but worried about continence etc (I'm 32 and work full time as a doc so need my continence!) Surgeons say it can take up to two years for the bowel to retrain itself and a bit longer if it has been out of business for a while (I've had this ileostomy 9 months so that I didn't get diarrhoea with post op chemo).

Anyway, any advise or thoughts are welcomed. If none availabel general positive vibes requested to be sent in the direction of tehUK around the 13th of MAy for the op (the day before my son's first birthday- these surgeons really do have great timing!)

Steve.

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Hi Steve,
My history is pretty similar to yours except 3 months after my reversal I found out my cancer had spread and I had to resume chemo. Like you, I had stage 3. Tumor very close to sphincter, but surgeon was able to spare sphincter after radiation and chemo shrunk the tumor enough. I also decided to get through chemo before reversal.
The fact that i had to resume chemo 6 weeks after reversal has no doubt had an effect on my recovery. THe good news, i've had no problems with incontinence. I do wear a pad, because since the chemo resumed, diarrhea sometimes comes on suddenly and it makes me more secure. I sometimes have a little staining. I am still working on foods that i can eat and foods that make elimination difficult, however this is hampered by the chemo. I find when i've been off chemo i'm more likely to have problems with constipation-which is a problem with the anal fissure i developed. Colace helps here. Obviously, when I'm on chemo diarrhea is an issue-also a problem for the anal fissure. Metamucil helps with the diarrhea. As you can see-my recovery is muddied by a few things. I do need the bathroom a bit more than I used to. BMs are smaller and more frequent. I work part time and am able to manage. Without chemo I know I could manage full time.
Would i have the reversal again? Yes!!! Is it manageable? Yes!!! Is it perfect? No, but what is?
Remember-i have the complication of chemo. Your recovery will hopefully be much easier without that.
The UOA (united ostomy assoc site) and Shaz ostomy page (she has a whole discussion about reversals, though many of these people had ileostomies for crohns) are helpful sites
Mary

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I also had stage 3, but had my reversal only 6 weeks after my surgery. For the next 17 mos. I did not have alot of improvement in the BM's. I went 10-15-20 times a day. I always wore a pad and was incontinent several times a week. I got up several times a nite and had bad butt burn as a result of frequent trips to the loo. To improve my quality of life and that of my family's, I had a permanent colostomy done in Jan. My life is sooo much better. We went on a cruise in March and I went snorkeling.

Would i have picked this, no. But i have my life back.

Good luck. I will be thinking of you and hope that you have a great recovery.

Maureen

michelediane
Posts: 9
Joined: Oct 2004

Hi Maureen,
My name is Michele I too had a diverting colostomy back in Dec. 02. After chemo and radiation I decided to make it permanent so I had an ap resection. I too would have never regained normal bowel functioning so I went ahead and made it permanent in May 03. I too am able to go snorkeling and swimming without any problems. Of course there are times I wish I was normal but I travel alot and I have very few problems with the colostomy.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Steve,
Best wishes for the 13th may ,I hope everything goes better than expected and you get back into working order with a minnimun of fuss,all the best Ron.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Hey Steve,

I had my reversal done 9 months after my surgery. During that time, I had follow up chemo as well. I haven't had any problems at all. Not one. No side effects, no urgency, no nothing. This is one time I am happy to say I am "ok" with boring and uneventful! My surgeon said there could be changes in the bowel habits for up to 36 months (3 yrs). If it weren't for the scar, there would be no evidence that I was stage 4, or that I went through anything that I did.

Tell your son HAPPY BIRTHDAY!

Let me know if I can help more,
Stacy

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Steve, Many positive vibes coming your way; best of luck to you and continue to enjoy that baby boy! Judy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Thanks for posting Steve. I was wondering where you were sir. I love your news and hope to learn from you soon (reversal stuff that is). I find it very interesting that 10 years from now you will look at your son and remember 2 anniversaries, his birthday and your reveral surgery.

I don't have any advice about the reversal stuff and can only imagine the joy you must be feeling inside yourself. It probably is a guarded joy but still a joy.

ENJOY IT and I wish you the very best with your impending surgery. I will continue to burn up my comm lines to God.

Hugs,
Lisa P.

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

Dear Steve,
I had a low anterior resection on May 13, 2004, and I have a PET scan scheduled for May 12, this year. I didn't have to get any extra gear from the surgery, but I had plenty of bowel problems afterwards. It has surprised me that I got so much information and in detail before the surgery, and so little real advice afterwards. "It can take up to xxxx months to retrain your bowel" is no information in my opinion. You will have lots and lots of BM's, string bean size at first. You will go so often you will get the "ring of fire" and need desitin or something like it to coat the area. You will read Dostoyevsky and Kafka in the WC with no problem finishing works by either. Every pair of underwear you own will be skid marked or worse.
The good news is there is an end to the misery. Four months ago I had to dash down the aisle of a movie theater...and didn't make it all the way, leaving an embarrassing trail behind me.
All of the suggestions here are perfectly correct and valid. The metamucil bulks you up and seems to help. The best bet for me was eating small meals rather than large ones. I carried lomotil or whatever else would work and when things started going too fast I slowed them down,especially when traveling anywhere out of town. You can tell when a "spell" is coming on, you start to empty as soon as you stand up from the last effort.
Eventually, somehow, it seems your bowel decides you have a point about holding things in, and decides to try it over longer periods of time. At this point, after ll and one half months, I am about 75% there...that is, no more than 2 BM's per day for about l0-days...then a problem for a day or two...then back to okay. You must keep your sense of humor, and understand that just as you would never humiliate someone who was ill, other people are the same way, most of the time.
Celebrate the retraining ritual as part of being a semi-colon and let us know how you are doing. We will all be with you when you are operated upon and thereafter.
Best of luck.

John

taraHK
Posts: 1961
Joined: Aug 2003

Hi Steve,
I'm afraid I have no experience with reversal (I ended up with permanent colostomy), but I wish you all the best with both the operation and the transition. I will be sending good wishes your way on the 13th.
Tara

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Steve,

It's good to hear from you. You were missed. I have nothing to offer on the medical aspect of your post, but I can send prayers, well wishes, and congratulations to you on finishing chemo and being ready for reversal.

Best wishes are being sent your way.

Kay

houseofclay
Posts: 63
Joined: Nov 2004

My husband just had his ileostomy takedown on April 8 (his situation is almost identical to yours) and already he would say he is getting better about knowing when it is time to head to the bathroom.

Eating several small meals does seem to help and having a sense of humor about it does help take the stress out of the situation.

Again, if you are completely miserable after a few months, you could always go back to the ileostomy.

Good luck!

rejoyous
Posts: 259
Joined: Nov 2004

Hi Steve,

No advice from me about iliostomies, except my one all-purpose post surgery wisdom: walking really helps get things moving again. But I did want to welcome you back to the board--I always enjoy reading your extremely well-informed postings.

I wish you all the best in the reversal. I'm packing up my best vibes right now and sending them express mail to the UK, so they'll arrive in plenty of time for your operation.

Remember to let us know how it goes. Meanwhile, Happy birthday to your son! Happy outcome to you!

VonnieKai
Posts: 30
Joined: Nov 2003

Hi Steve
Hope you're doing well. My husband had an ileostomy reversal in September 2002. He had a lot of problems with fecal incontinence initially - we didn't get a lot of advice or information from the colorectal surgeon except that he might have some "leakage". What he had was more like no bowel control at all. It took about two years for him to gain some control - he still has problems, especially since he's on chemo and has diarrhea, but it has gotten a lot better. You probably won't experience the extent of problems like he did because my husband is 74 and he is a diabetic, plus he had a stroke before his rectal cancer surgery - so even with all these problems, he still eventually got better. Just make the colorectal surgeon give you as much information as possible about fiber therapy and sphincter exercises. His surgeon never said a word until we complained that the situation was so bad, he was ready to have a colostomy performed just to stop it.
Take care
Vonniekai

Shandle
Posts: 205
Joined: Apr 2005

Hi steve! Wish I can offer you more advice here, but can only wish you my blessings. I was one of the lucky ones that didn't have to go through this, however I was in the hospital without even an ice chip to make sure all was well. I was on a meat & potatoe liquid drip. Seriously, ask a lot of questions to both the surgeon and your Dr. and post more often! Happy to hear your colon will be working for you again from the long road you've had to deal with! huggs ~ Wanda

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