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Colostomy Reversal

Past Member
Posted by Past Member, on Fri Dec 18, 2015 1:24 am

I have a colostomy and have had it now for about 2 months.  My surgeon said it can be reversed and I have a follow up with her in January to hopefully begin the process of testing for the reversal.  She said at my last visit though that sometimes they have to do an ileostomy because things need to heal.  I am so scared that I will go into surgery and wake up with this.  I also am fearful that even though she said it can be reversed what if they can't do it?  I am only 42 and this has affected me greatly.  I am so depressed and anxious all the time.  I just want to be myself again without the bag.  Has anyone with a colostomy went in for reversal and had to have a temporary ileostomy?  Any advice would be helpful.  Any tips on accepting this until the reversal?  I ahm so depressed and don't want to go anywhere or do anything.  I am happy to be alive but I can't seem to shake this depression.

Thanks 

Lori

Past Member
Reply by Past Member, on Fri Dec 18, 2015 12:25 pm

I had an iliostomy about 6 years ago now was also told at the time i could have it reversed , but after many talks with doctors i decided to stay as i was and not get it reversed , i know at first it hits many people really hard it did for me and for nearly a year i found day to day life a struggle but now a few years down the road i find it a lot easier to cope with and infact my iliostomy hardly bothers me at all , so i would fully recomend having good talks with doctors about the reversal and also if possible people who have had it done and people who decided not to you may find that there are good and bad about both sides , which ever way you decide to go i hope it makes things better for you and good luck.

 

Drew

Past Member
Reply by Past Member, on Fri Dec 18, 2015 4:06 pm

Thanks for your reply Drew.  I am wondering, however, what ultimately made you decide not to have it reversed if you could?  At this point, I know in my heart I definitely want to have a reversal, if possible.  I am extremely anxious for my upcoming appt. with my surgeon.  I just have so many unanswered questions.  I truly hope mine can be reversed with little complications and I can resume back to my life without the bag.  I am having a very hard time accepting this and my self esteem has completely diminished.  I hope if for some reason this cannot be reversed, because as you know, things are never guarenteed in life.  I truly hope I can learn to accept this and move on.  Thanks again and I hope all is well with you.  Happy Holidays!

Lori

Past Member
Reply by Past Member, on Fri Dec 18, 2015 8:33 pm

Probably the biggest iisue for most of us when we went through it was the self esteem its a hard thing to come to temrs with , i think some of the main reason i didnt go for the reversal where , i didnt want to have to go through another major operation and have to recover from that , having the reversal wont make all things back to normal yes you lose the bag on the outside but inside wont work the same anymore but that does differ depending on the reason for the bag , mine was colitis so had my colon removed which no matter what a reversal can never replace , i know the bag makes people feel a bit less than whole , less attractive and can make some very depressed what you have to think though is that it could be worse , youre still here , still walking around so even though its hard try not to let it get you down too much , have a good chat with your doctors get all the information you can on any procedure you are thinking or going through :)

Happy holidays to you too

Drew

Reply by Newbie Dana, on Mon Dec 21, 2015 12:55 am

Self esteem is always a really hard issue. It's one thing to say, "Be happy you're alive; this saved your life," and it's another thing totally to actually feel it. I have a (hopefully) temporary colostomy. Complications from my colon cancer treatments 4 years ago led to an ulcer which wouldn't heal, became infected, and ultimately perforated, causing acute peritonitis and the colostomy to stop wastes from flowing through that part of my colon. Definitely a life-saver, but I was NOT looking for that kind of solution!  A lot of rebuilding your self-esteem is friends and family who are very accepting and supportive. Also, there are a lot of products (belts, wraps, etc.) that help hide the presence of the pouch, and help you feel more normal because you look more normal, and can ignore the presence of the appliance and go forward with your life.

Make sure the doctors are very frank with you, and write down all your questions and bring the written list with you to your meeting with doctors. If you don't ask, you will always wonder if there was another alternative that wasn't explored. Also, as you talk to the doctors, make notes on pros and cons of each procedure they are considerig - pros and cons as they apply to YOU, not just to them. They do want what's best for you, but they are mainly thinking straight physical effects, not mental or emotional effects of the procedure.

After a while with the ostomy, you may also decide not to get it reversed, at least not right away if it means a second surgery for an ileostomy as well. The reversal, as well as the ileostomy, are both major abdominal surgery, and will take time to recover from each. You may also want to see a counselor who can help you with some of the emotional effects of your surgeries. Good luck and good life to you, whatever you decide - you still have lots of good life ahead, either with or without the ostomy!

Reply by Erinbeth, on Tue Feb 02, 2016 6:08 pm

I am in a very similar position as you, I think... I had a transverse loop colostomy back in July 2015 when I was first diagnosed with colon cancer.  I had a tumor causing a blockage and ended up in the ER with severe abdominal pain (that's how they found it).  That first colostomy was primarily to relieve the pain/blockage and allow for treatment to begin as quickly as possible.  As it happens the cancer had metatiscized to my ovaries and about three weeks after that first surgery, one of the ovarian masses became abscessed/infected, and the tumor in my colon had perforated, and I again ended up in the ER with extreme pain and spiked fevers for five days before they decided they had to do another surgery.  They removed all the cancerous tissue, full hysterectomy, even an appendectomy for good measure.  Reversed the first colostomy and gave me a new one in a different place - and end ostomy this time, so I am still "disconnected".  I still have some of my rectum remaining and my surgeon is hopeful that I can be reconnected after chemo & radiation treatments are complete.  

My surgeon has also said that with that reconnection, they will reverse the current ostomy and I'll need an ileostomy instead to allow for healing.  And then a final reversal once healing is done.  I am not looking forward to additional surgery - that second one was a full 6 weeks before I felt something close to normal again - but like  you I am convinced I want it reversed.  I am also 42 and have a teenager and a toddler - lots of activity in our household, all the time.  It has been a huge adjustment, but I am reminded that I'd probably be dead now if they couldn't do the colostomy procedure!  As it is, currently I'm "cancer-free" but need to finish treatment to help ensure it doesn't return.  And so I am keen to be back to normal as much as possible which includes a reversal, at some point in the next 6-9 months or so.  And even though I dread more surgery I have full confidence in my surgeon and others on my care team - that makes a big difference as well, so do keep those discussions going.

That said, I have also thought - gee, I could live with this if I had to.  It's no fun when there is unexpected leakage or a blowout of some kind (I've only had one of those), but I've gotten over worrying if people can see my bag through my clothes, things like that.  Vanity went out the window with my first kid anyway :)  But as others have mentioned there are lots and lots of accessories to assist with that kind of stuff.

Good luck with everything!

 

Reply by jessical05, on Fri Mar 11, 2016 11:36 pm

Hi Lori,

It is interesting you and I are in similar yet very different positions.  I am 27 years old and I've had the reversal surgery.  I originally had the ileostomy when I was 21 and had the reversal that same year, talk about a vulnerable age and feeling out of your normal skin.  I was lucky I was able to have the reversal surery after about 5 months of having a bag. But it is now 6 years later and I am playing with the idea of going back to the ileostomy.  I've had the reversal surgery and my j-ouch looks perfect according to several doctors, but for some reason I keep developing fissures. For the first year after thhe reversal I was great but for the last 5 years I have been going to the hospital for a procedure on my j-puch ranging from every 2 weeks to every other month so the can dialate the anal for the jpouch to function properly.  Now I had a sever case of ulcerative colitis so I had to undergo a total colectomy which may be different from your case but to this day I still suffer from urgency, leakage, have to watch almost everything I eat, and stomach cramps. Now I know what I am experiencing with the j-pouch is not everyones experience but it is definitely something to think about. It may be great not to have the bag, but I did feel better and found the sickness effecting my life a lot less before I had the reversal.

I hope this helped and good luck with the decision you make!

Reply by CharK63, on Sun Mar 13, 2016 9:28 am

Hi Lori,

In 2 days I see a new surgeon for my first consult about reversing my colostomy and like you I'm worried to death! Mine was done 9 months ago and I was told I had to wait a full year and lose 20 lbs so I'm in shock that I have the appt and I'm totally unprepared.

I have no idea what to expect or what kind of testing is involved or even what an illiostomy is so I will be following your discussions closely.

I can tell you that I don't want to live like this either. I am 63 and everyday I thank God I don't have to work because I couldn't have held a job with all the leakage, the changing of the bag, constantly checking and all the pain I've been through. I only last week realized I finally have my strength back but since I never leave the house it doesn't matter much.

I live with and take care of my 90 year old mother and I thank God she hasn't been ill as well because I wouldn't be much help. I make a hot meal for dinner and do the shopping and cleaning but only the minimum and I haven't done anything outside at all.

I have an inverted stoma and I'm unable to secure the bag. I have creases and folds from having cesarean birth deliveries 30 years ago and also because I gained and lost 100 lbs in the last 15 years. I use rings and shape them like putty to make the bag lay flat on my stomach but it isn't secured at the opening. Some of the devices I've tried actually seal the opening and cause my stool to back up and enlarge my stoma twice it's size. I often have bleeding and there's no way to protect my skin. The abrasion is so bad sometimes I have to tear off the bag for relief. Sometimes I change bags twice a day and the adhesive is stronger when it's fresh and tears my skin. I've learned to use the crusting method of applying stoma powder and skin protectant in layers 3-4 times and that's all there is between fecal matter.

I've had surgery for stoma repair a couple months ago because my stoma seemed to be repairing itself in the moist environment and closed up to 6cm. The repair enlarged my opening to 19cm but it's constantly tearing.

So all that is why I think I'm getting early start for reversal because it's the only way to fix it. Also I lost 15 lbs while I was recovering and my doc is applying that to my weight loss goal so I'm almost there! I am seeing a new surgeon who might be able to do it laparoscopically and that will be great to only have 2 small holes.

I'm glad that I read these postings so I don't get too gung ho and find I'm unable to proceed. I had no clue about waking up with the other surgery. You've already helped me a lot!

Thank you,

CharK

Reply by Mary Ann, on Sun Mar 13, 2016 2:38 pm

Hi Chark

4 years ago now I had a colostomy for diverticulitis with stricture, abcsessed into my hip, could hardly walk had lost 40 pounds, The first time they tried to do a takedown they found more strictures, ended up getting an ileostomy, the ileostomy was much worse than the colostomy, poop was totally caustic, bag would not stick, got a horrible itchy rash. The dermatologist prescribed floucinonide solution (not ointment, the ointment made my bag come off) that let me limp through a few months. The bags did not stick right after the ileostomy, I used rings, paste whatever, once the skin was not sloughing off from the rash they stuck much better. I had a successful reversal almost two years after the original operation. That was such a relief. Skin is still a little sensitive, but bearable. They kept talking about laparoscopy, but I had too many adhesions from a laparoscopic procedure from 20 years prior. Finally went to a colorectal surgeon at my locat university, that made all the difference from the general surgeon I had been seeing. I was able to work part time, fortunately, I work from home so when I had issues I could make it to the bathroon, even if I was on the phone. 

Anyway I am also 63, taking care of my two teenaged grandkids who live with my husband and I, looking forward to retiring soon. Reversal was great, except they kept me in the hospital for two weeks. I have some bowel issues, mostly diahrhea, but immodium helps me keep it in check fairly well.

 

Anyway I would reccomend finding a specialist in colorectal surgery to maximize your chances of success, and best of luck

 

 

Reply by LadyHope, on Thu Mar 17, 2016 11:09 pm

Hi Jessica, I wanted to answer your post about life with an ostomy.  I choose to have an ileostomy from the very beginning because I heard so many horror stories about failing j-pouches.  I was so sick with UC, I never wanted to repeat UC.  Life with an ostomy is different but manangeable.  It has been some trial and error but I learned so much from reading the posts on this site.  Any questions that you may have, post them.  Someone or many will answer with helpful information.  I also wrote a short book title Stanley and Me make three about life with an ostomy.  I wrote it because I could have used a book with a message of inspiration while I was ill and facing surgery.  Good luck with your decision and, what ever decision you make, will be the best one for you.  Take care and best wishes.  Sincerely, LH 

Reply by CharK63, on Mon Mar 28, 2016 8:27 pm

Thank you Mary Anne,

I've had my consults and am waiting for a date. They want me to have colonoscopy one day and "bring down" my previous surgery the next day so I only have to do one prep.

Not such an easy task it seems coordinating with two specialists. I'm scared yet elated to get rid of the bag.

I've had a bad cold this week and don't want to move but this old bag demands my attention like it or not.

Oh well, the future looks great if I don't concentrate on what could go wrong 

Reply by CharK63, on Mon Mar 28, 2016 8:38 pm

My surgeon said I will only have an iliostomy if she's unsure of the strength of my incision on the colon. Or if she thinks I need more healing time down there.

It's so great to know in advance what might happen.

Reply by fable3, on Thu May 05, 2016 11:03 pm

It's been four years since my two phase reversal. I had a colostomy for almost 2 years before it was reversed. Best decision for me! It was painful and difficult to readjust. Try to be patient with yourself :)

Reply by LadyHope, on Fri May 06, 2016 12:15 pm

Hi Jessica, I saw that you view me recently.  I wanted to briefly comment about having an ileostomy for the past three years.  Although it is different, I am able to do most of the things that I did prior to UC and surgery.  I work full time, travel, go out to dinner, go to the movies, the orchestra, plays/shows, shop etc.  I do not get up 5 times a night to go to the bathroom unless I have a stomach bug or ate something that really did not agree with me.  I get up one time to go to the bathroom and check things.  I eat most foods that I enjoy but chew them more thoroughly.  I never really gulped down my food nor was I a fast eater.  I never enjoyed foods that were a potential risk for blockages such as beans, hot dogs, grisly cured meats, raw pineapple, skins on fruits and veggies.  I do enjoy tomatoes, especially Jersey ones in the summer so I peel them.  I wear most styles of clothing with the exception of something pulling tightly across my stomach.  I always had a stomach bump/never completely flat so I am more aware of my clothing selections.  I was married when I acquired my ileostomy but only married for a few years. While my husband and I were dating, I never had bowel issues so this drastic change was drastic.  I can't comment on dating with an ileostomy but I do know many people who date and have lots of fun.  I also know many who met their spouse and their spouse did not have an ostomy.  So the ostomy was not a deal breaker.  I couldn't imagine having a j-pouch run my life.  It would be unfair.  Please read beyondpar's profile and posts.  He had a j-pouch and reversed to an ileostomy and is completely happy with his choice.  But, this is your choice and whatever one you make will be the best for you. That I believe.  Take care and Good luck to you.  I never had a j-pouch because I feared chronic pouchitis.  LH

Reply by CharK63, on Fri May 06, 2016 11:01 pm

I'm counting down now for my reversal. It's in 10 days! I've had my EEG, EKG, colonoscopy, I don't even know what else. It's frightening that I don't have a choice in the matter because the drs. can't make my stoma work. The doctor had to find a pediatric scope to do my colonoscopy through my stoma.

When making plans for care of my mom I only considered hospital stay. How stupd was that? So I'm now researching recovery time and its very daunting. Folks say to be prepared to take as long as initial surgery. How do I prepare to lose 3 months of my life again!

Still...I will do what I must. There's no alternative.

Reply by CharK63, on Sat May 07, 2016 5:28 am

Thanx for the support.

Reply by colo23, on Thu Aug 18, 2016 4:15 pm

I have a reversable colostomy for about 3 years. I tried two times, but each time couldn't even get to the table.

I have a problem with drinking the prep and taking antibiotic pills, at the same time.

I aucully get sick, gaging and even throwing up.

Does anybody have any advice or the same problem.

This bag is really getting to me mentally.

 

Reply by CharK63, on Fri Aug 19, 2016 3:36 am

MaryAnne,

i want to share with you that I got my reversal May 17th and everything gets better every day. I'm nowhere near 100% but I'm beginning to be productive in tiny baby steps!

I mentioned I stay home with my 90 year old mother who will need me more rather than less in the future and it is hard to stay at home when you don't feel your best. I have plenty to do and lots of interests that I don't feel I'm sucking the world dry being a lop but I have to have energy to to keep in motion or I sink into depression. I'm happy to be the one with mom and I've done a lot for her health but I never intended to be retired at 63. If only I could interact more with the outside world then having my health back would make life pretty darn perfect. 

The surgery was difficult in that I had a lot of scar tissue on the outside of my colon that tests didn't prepare my surgeon for. Recovery has been harder because it's assumed that I had minor surgery because I was released in 4 days from the hospital, no convalescent home and no visiting nurses who were constant reassurances that I was ok. I was in charge of changing dressings and I knew very little bout what to watch for but now I'm great! I intend to get back on my bicycle after a year. I don't have a car and rely on buses and taxis to do our shopping and I will soon take charge of that again. 

The best thing is when I take a shower I step in and wash then rinse and step out. That is so amazing to me. And now I will watch my body  and take control of my bowels so I never have this problem again. God bless my family and my Doctors for me being alive and well today. 

Reply by colo23, on Wed Aug 24, 2016 9:27 am

Hi Maryanne, you are a trooper. I also have a 89 year old mother with the start of loosing her short term memory. She lives 40 miles from me, but I work near her, so because of the help she needs and the fact I'm separated headed for devours, during the week I stay at her house. Then she has my sister on the weekend. We'll getting back to the reversal, I haven't got it due to I have trouble with prep & meds at the same time

 I tried 2 times, but lately I've been thinking against trying again, because of what I've been reading on this site. A lot of story's of failer. It seems your on your way to success, and I hope that's true for you. I will pray for you. I have to work & I work hard installing ceramic tile, do you think that would be possible. How bad did you feel at your worst. 

I can't believe our stories are so simular, except the part were I'm scared to do reversal.

Do you know or have heard anybody else having the same problem as me. Trouble take prep & meds together it makes me trow up that's even if I can get it down first.

But I'm glad you were able to do it, hopefully we will communicate. God bless you Joey

Reply by CharK63, on Thu Aug 25, 2016 11:32 pm

Aaaarrrggghhh!!! Colo 23, I was halfway they a response to your email when I tried to correct a typo I lost it all! I'm so sorry and I intend to answer you but I'm falling asleep at the wheel-not really-while mom and the pets are waitin to eat. So I will get back to you. 

Money thing I want to say is I saw nothing but negativity about reversal surgery while my support team: docs, nurses, family, friends, had nothing but support for speedy recovery and getting my life back together so I decided to quit reading the Internet. Scaring me was not helpful to me at all. 

As far as work? I don't think they allow us much time to recuperate. My doctor told me after 4 weeks had I been working they would have cut me off to perform all normal activities. She said this when u meant to find out how why I needed an hours rest after every half hr of activity. And that was no joke. By the time I cleaned up after performing and duty my back would be aching and my side throbbing that would be better til I slept at least an hour. Especially any hand eye

Reply by ycats, on Tue Nov 15, 2016 4:45 pm

did you have reversal?

Reply by CharK63, on Tue Nov 15, 2016 5:58 pm

Yes, may 17th ten months after ER colonostomy. I'm surprised u made any sense from what I wrote. I was so frustrated. 

Reply by spinn87, on Fri Mar 03, 2017 10:29 pm

Hi Jessica, where in New York are you ?

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