Deciding on Permanent Ileostomy - Am I Crazy???

I have decided to have a permanent ileostomy in Jan 2014 instead of a reversal after weighing up the pros and cons of both. Does anyone else think this is a crazy idea? This is the impression I get from all the different doctors I have met at the hospital following check-ups after my 1st operation in Feb 2013. They are quite surprised with my decision and make me feel like I am making a weird choice.

You must do what you think is best for you. You know your own situation better than the doctors.

I agree with Susanna. I have wibbled wobbled back and forth with it myself. I have a colostomy that can be reversed, but at age 66 and having had major illnesses, I am reluctant to go through the surgery which is certainly not simple. I usually lean towards surgery after having a couple of bad oopses with the bag. Silly me!

Good luck with whatever you decide, but just know you are not crazy, or CraCra as my daughter puts it!

Judi

Hi Top Bloke,

Please hear me when I say... you are not crazy in your decision to not have the reversal. We all have to walk our own paths and make the decisions that are best for each one of us. Like you, I have decided against reversal. I read your story and saw that our struggles with UC have been similar. After almost 18 years in remission and off all meds, I had the most severe UC flare of my life in Feb. 2013. I did not respond to any medical management during my two months in the hospital and had my colon removed and ileostomy created in April 2013. They only performed the one surgery because I was too ill and malnourished to tolerate any more.

I'm sorry to hear about how your doctors reacted to your decision. The only doctor that continues to question my decision is my gastroenterologist. When I told my surgeon about my decision, he was very supportive and just said... "ok, but you will need one more surgery to remove everything, and just get in touch with my office when you are ready to do it". I also agreed to sit down with a colorectal surgeon to discuss the pros and cons regarding reversal. He was amazing and in no way did he direct me towards reversal surgery. I had so many questions for him, and he was very open and honest with his answers. He did not seem surprised by my decision at all, and he told me that he often sees patients in their 20's and 30's making the same decision because they are healthy and happy with their lives and their ostomies.

Everyone has their own reasons as to why they do... or do not want reversal. With UC, we are always at a higher risk for colorectal cancer. So for me, knowing that having my rectal stump and anus removed guarantees that I will never get rectal cancer was an easy decision. I should say... it's an easy decision in my head, but not so much my heart. I still struggle with and am overwhelmed with the things they will have to do to my body during the final surgery, but I know deep in my gut and heart that it is the right decision for me.

I just wanted to let you know that you are not alone and that there are others out making the same decision. I have an appointment with my surgeon this month, so not sure if my surgery will be before or after yours. It sounds like you have an amazing support system. Please keep us posted... take care.

Everybody is right in saying it's up to the individual and we all have different situations. For me, my entire colon was removed after emergency surgery for acute diverticulitis. I had 4 surgeries and got septic and was in a drug-induced coma for 2 weeks. I feel very lucky to be alive. Facing the fact that I only have about 8 inches of colon left to reattach to doesn't leave much room for water to absorb. I am not ready to do battle with another surgery, all the BM's and accidents I would face, let alone restrict my diet and stay close to a bathroom. I can eat and drink what I want now and manage my bag very well with no leaks. For me right now, the decision is easy and I feel okay about it. You should too.

Words of Encouragement from Ostomy Advocates I Hollister

No, you are not crazy.............I will say it again....no, you are not crazy.........Once the ostomy is here, and the health comes roaring back, that feeling of health is so unreal, that most doctors don't understand the decision you are making, because they don't understand just how sick we were, and just how good we feel with a bag.............I have had a J-pouch and a permanent and I love, love, love, love my bag, for the health it gives me, for the life I now can lead, for the things I can now say and do with absolute comfort.................So stick with your gut feelings, and honor them, and you have much support here to help you..........Michael

Thank you all for your advice and support. I have only just joined this website and I cannot believe how much love and support is out there. All of you have been on an incredible journey of your own and have come through magnificently. Thank you beyond par, Troy, crazybat13, susanna.

New Horizons, I cannot believe how our experiences are almost mirrored. WOW. I will certainly keep you updated. Please keep me updated with your progression. One of the main reasons I am going with a perm Ileo is the fact that once it is inside, I could possibly have more ops if things like pouchitis kick in or get any types of infection. I cannot possibly put my wife and 5-year-old through all this again.

One thing my amazing stoma nurse said to me was that the small intestine is designed to keep food moving. So I thought if this is the case and I have a reversal, am I messing with nature and making the small intestine do what it should not be doing? Also, if I were to have a reversal and it did not work out, can I afford to lose a portion of my small intestine? I have instantly adapted to my bag and stoma which I call Stella (the smeller). I can go to the toilet when I want and not have fear of not being able to hold it in. It's also like a party trick being able to poo standing up. Now that is cool.

Hi there...thought I would add my bit to the discussion as I had to make the reverse, not-reverse decision 3 years ago. After 10 years with no UC issues, it suddenly hit me a solid blow in the summer of 2009, resulting in complete removal of the colon and thus an ileostomy. The rectum was left in place for a reversal but healing was the immediate issue..the surgeon and I briefly discussed reversal but not to happen for several months. During that several months, I discovered several things: 1. I was getting along just fine with the bag, a bit of inconvenience but I felt fine and nothing in my world turned upside down, friends didn't care how often I went to the john, women didn't abandon me!! 2. I didn't feel in any hurry to get a reversal and neither was my gastro or surgical professionals pushing the issue. 3. Several nursing friends very familiar in dealing with ostomy and reversal patients were strongly suggesting that if I was ok with the bag, go slow, and research the issues. 4. The issues like: pouchitis, fissures, diseased rectum (more UC), heightened risk of rectal or anal cancer which can be very difficult to catch before it has spread, pouch rupture-sepsis, more surgeries, increased anal drainage as one ages due to a decline in the ability to control muscles and response in that area of the body. These were some of the major issues. My final decision after over a year of dithering was not to reverse. The decision was not complex...I felt fine and can expect to do so, I won't have to deal with the issues mentioned above, AND... and this is not the case with many people...I could care less of what others think re having to wear the bag...anyone who has suffered with bowel disease knows how debilitating it can be and the only opinion that matters with respect to reversal or not is YOUR OWN..outside the obvious physiological limitations as may be pointed out by your medical team..and if your wife is onside...then the decision is even that much less burdensome. All the best.

PS... Keep in mind surgeons love to be poking around in there, but they don't have to live with the consequences. If you reverse make CERTAIN you get a VERY experienced team of surgeons!!!! Cheers.

I have been told I am not a candidate for reversal and that I might end up being worse after it. I am a female and bling out my bag and make it girly......I also purchased a portable bidet to rinse the end of the bag - good luck

I too was given the option to reverse my colostomy. I have horses and the cutting of my muscles put me way back in my riding, and as I'm 72, I can't afford the time. I find the older I get, the less I tolerate anesthesia. I've also had the doctors almost push me into a reversal, but as everyone else says, it is your choice. I find there are pluses in having one, like wearing heavy clothes in the winter and having a long run back to the house which I don't have to worry about anymore. Do as you feel is right for yourself.

Good luck,

Charlotte

From day 1, I voted for a permanent ileostomy and never regretted it. I only wanted one surgery for many of your same reasons. I did not want more surgeries, I wanted to avoid pouchitis, additional scoping and cancer risk, an atrophied muscle after age 60 which would have necessitated a reversal of a J pouch, and I wanted the control of not having to run for a bathroom. My surgeon agreed I made the right decision for me. I never regretted it in the past 6 years.

Thank you all for your kind replies and advice. It is very interesting reading your own personal experiences. My decision has been confirmed and I will be sticking to the permanent ileo. As some of you have said, the older you get, the harder it is to control your body. It will also be harder and longer for the body to recover after age kicks in. If there were no other risks with having a reversal, I would not have even thought about it and gone straight for that choice. But when it comes to health, I cannot gamble with it anymore. I used to gamble with it by smoking to keep my UC at bay, but used to feel guilty at the same time as I did not want my daughter seeing me smoke and also would I be around to see her grow up if I continued smoking. I tried to stop a few times, but each time I stopped, my UC came back with a vengeance. It was a no-win situation. As soon as I was hospitalized this year, I stopped. Now I am clean from nicotine and feel much better in myself. It could be a blessing in disguise having the first op. Anyways, the next op is planned for JAN 2014. I'm going to go to the hospital healthy this time and come out poorly.

The bag has its ups and downs, e.g., when going swimming with my daughter, I have to keep trying to cover the bag and always check it every chance I get to make sure it has not started to peel off. The plus side is not having to race for the toilet to go for a download. I have time now.

Just to add my two cents, the surgeon asked me if I would want a reversal before my colostomy, and I told him no from the start. I didn't even have to think about it. I knew what I had already been through and was in no mood to experiment or go back to where I was. It was the right decision for me. Sometimes we have to know when to say 'enough' and decide for ourselves.

Top bloke -- you are definitely not crazy and not alone. I made the same decision after many years of UC. Then like 'newhorizons' I was in hosp with the worst flare ... then CDiff. Had ileo - as brief a surgery as possible ... it was touch and go for me. They left the rectal stump, assuming that down the road I'd want to try the pouch. 2 years later when my health was good again, I had the stump removed. The ileostomy is permanent.

I think people who have not been so gut-ill just don't understand. For me - any maybe you - there were too many potential issues with going the pouch route. And I just felt that I'd continue to have problems.

The bag/appliance/whatever we want to call it does come with its own set of issues ... but I feel healthy for the first time in over 30 years. I jog now 3 times a week. Have actually put on weight (a bit too much ).

Also, I think age comes into play. Are you quite young? This may be influencing what your docs think you would want.

Anyways ... no one knows but you. If your quality of life now is good or predictable or whatever it is that is better than 'before' ... listen to your gut.

All the best.

If you call 40 young, then yes, I am. I think you're right, Beatrice. It may have something to do with that. One doctor who was surprised with my decision asked me if I was married, and I told him I was. To which he replied, "What does she think of your decision?" I told him that we discussed it and it was a joint decision. She agrees with the decision I have made and would not want me to go for the reversal either. In fact, she is 100% supportive and does not want to see me in the poorly state I was in again. As people have mentioned, after the operation, the feeling of living life is back. Not having to worry about the pain or the next episode. Nothing can replace that feeling.

I can only tell you my story. I had emergency surgery and was told before I went under that a colostomy was going to be the end result (diverticulitis). I managed to survive the operation and it took about 4 months to fully recover. I never felt better in years. I was 55. I was able to continue my kayaking, skiing, etc. In fact, in the winter, I'm part of the Ski Patrol that rescues all the "hurt" bodies on the hill, and I do this in the Rocky Mountains, so the hills are nice and steep.

I went through a few years with the bag. It was not an issue. I felt so good. Finally, this spring, just before the ski season ended, my surgeon said for the 5th time at least, "You can have a reversal if you want. Odds are, I will be conservative and tell you it's at least 90% that there will be no issues." I finally broke down and said, "OK, let's try."

April 14, the surgery was done. To put it mildly, your ass has a short memory. I had to learn to use it again. Think something the size of a pea in your rectum that has not been used for a while. Well, it was like trying to expel a 4-foot log. It took me about 5 weeks to get rid of the "I am going to go get the bag back." Today, 5 months later, I'm back to normal. Knowing what I know currently, I would probably have done it sooner, and yes, I would do it again. But the first 5 weeks or so after... Oooh baby... Yes, I can laugh about it now.

Good luck to everyone in the future.

You are in no way crazy!

It's your body, your decision, and you know what you want to live with. That's my 2.5 cents.

They want the money and don't have to feel the pain.

Back in 2010, I had to have surgery to remove more of my colon and along with it, my J-pouch which served me well for about 6 years. Precancerous cells were popping up, and the whole shebang had to go. I asked my surgeon if I could have another reversal, and he agreed to fashion a K-pouch which would be smaller but effective. Well, the surgery went smoothly, but my GI discretely cautioned me that a reversal should work, but I might need to hit the head much more frequently and that leaks from a weakened sphincter were possible. So, as time went by after the surgery, I realized that the bag was really quite manageable. Why mess with success? I could play 18 holes of golf without running behind every tree. Although the K-pouch is still inside me now, my stoma and I have reached a level of détente never anticipated. Sure, I know now that I can no longer aspire to dance at Chippendales; but, I no longer jump from one toilet to another just like Tarzan on his vines. I might add that this decision to stay with the bag is a lot easier for those of us on the back nine of life. For the younger ostomates facing this decision, keep in mind that in the years ahead, medical marvels will afford you unbelievable options. Good luck with whatever you decide!
PB

Thank you Primeboy, for your shared experience. You have, along with others, rubber-stamped my initial decision to stay with the bag.

LOL, you are not crazy; I have decided to keep my ileostomy rather than reverse it as well. I have Crohn's and not UC, so doing that doesn't "cure" my disease, but it certainly makes a huge difference, and I have a better quality of life because of it. No brainer! Good luck.

Hi TopBloke

Did you stick with your decision not to have the reversal?

I had an emergency operation in July 2020, and when consultants discussed the plan for a possible stoma, I was totally mortified.

I've been diagnosed with Crohn's Disease since a big surgery back in 1996 while pregnant, when I was in and out of the hospital during pregnancy, violently vomiting and losing weight. As my belly got bigger, the rest of me was getting thinner and gaunt. I went into labor at 27 weeks and was injected with all sorts of meds and made to rest. Luckily, the labor stopped, and I was kept stable enough for doctors to deliver my baby via Cesarean at 35 weeks pregnancy. He was a very healthy boy at almost 7 lbs, even though he was 5 weeks early - lol

During the surgery, it was apparent that I had a small rupture and some ulceration, which resulted in a partial hemicolectomy. That was when I was first diagnosed with Crohn's Disease.

I've muddled through life with relatively little problem until late 2019 when I started having throbbing in my side on and off for months. I was in A&E about 4 times over the following months, and then the last A&E, I was given morphine and admitted to a ward during the first wave of Covid. Doctors were so busy, the plan was to get me stable enough to send home and come back at a later date with a plan for surgery. But after 24 hours, they were doing my medical observations and said they would need to take me in for emergency surgery as there were signs of deterioration. I was told that until they open me up, they did not know what they were looking at, but the possible outcome was a temporary ileostomy. I protested so much as I didn't want it. It was pure ignorance on my part, I was mortified at the mere thought of a bag on my stomach. I cried so much and cried as I was wheeled into theatre.
I woke up in Intensive Care, I'd been in surgery for about 6/7 hours. I had 2 days there, and the staff were truly the best. Then taken to a bowel ward. I remember being in so much pain, and the vomiting was awful. It was about 3 days before I could look at my bag; this horrible alien was leeching on my body.

While I was on this ward, the Stoma team taught me how to do bag changes, etc. I hated it, but I just wanted to get home and did after roughly a week.
Recovery was slow and long, I felt. Little steps, things got easier, and I adapted to a new life. But after 2 months, I was back in A&E struggling to breathe. I thought I had a bad muscle pull between my shoulders, but I was struggling to breathe in. X-rays showed I had many pulmonary embolisms, probably the result of the major bowel surgery.

I found the following months a learning curve. It felt slow and long, and I felt very limited. I feel it took me a good 12 months to start to feel strong physically as well as mentally.

Here I am 2 years on, and I feel comfortable with myself, and I have opted to keep my stoma (Emu). My consultants have said the choice is all mine. The emergency surgery was down to a benign tumor and stricturing at the old point of surgery from 1996. So some more bowel has been removed, and my stoma is the norm. I feel I have gone through so much change and do not wish to have any more surgery. I still have to have the biological injections to treat the Crohn's, and I'm due a Capsule Camera soon as I'm having a bit of discomfort, and Calprotectin levels were up in February 2022.

We suffer enough, and I'm not going to rock the boat. My choice is to be as comfortable as I can, and I manage - so Emu stays

ALSO - during my stays in the hospital during the first wave of Covid, I found it exceptionally challenging as I could not have any family visits for support (adding to the mix), and our NHS were 1st class. I witnessed the pressures they were under, and my medical care was exemplary