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Why did you choose to have your colon removed?

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Posted 12/26/2014 2:21 PM (GMT 0)
Looking for pros and cons here.
I know a lot of people have been dealing with IBD a lot longer than I have, so I would like to know

Why did you choose to have your colon removed?

Did it improve your life? Or were there expected/unexpected disadvantages I should be aware of?

If this is the only "cure," why should I try so hard to keep my colon?

My mouth is full of sores and my joints ache again. I am so tired; and tired of being anxious and tired and spending my life on the toilet.
I'm tired of the side effects of all these pills.
Posted 12/26/2014 2:56 PM (GMT 0)
I often speak of the "illusion of choice" when relating to having your colon removed. It is usually presented as a choice but in reality you've ran out of other options. I was terribly sick with a Crohn's flare for 9 months, failed or had a reaction to every medication, lost tons of weight, and had abscesses and infections that we could not get under control. A colonoscopy showed my colon was wrecked so I really was left with little "choice".

I have Crohn's, not UC, so it was a lot harder to go with an ostomy since it is not a cure. My disease will come back and it will have fewer areas to attack now that I have no colon. If you have UC, then having the surgery is effectively a cure. The only risk is that you've been misdiagnosed and really have Crohn's.

How's my life with an ileostomy? So much better than before, even when I wasn't flaring. Most of my anxieties in life are gone. I can go to a theme park, go hiking, eat out with friends, go on long car rides, all without having to worry about immediate access to a toilet. I had been dealing with those anxieties for 25 years. I have so much freedom now. I'm feeling good and have gained 40 pounds in 8 months. Does anyone want to be walking around with a bag? No, but it is a heck of a lot better than where I was.

That being said, I've had my disease for over a quarter century, and you were diagnosed less than a year ago. Have you run out of options yet? Have you tried a biologic drug like Remicade/Humira/Simponi? They are the heavy hitters and are life-changing for a lot of people, myself included.
Posted 12/26/2014 3:09 PM (GMT 0)

Not Happy Yet! said...

Why did you choose to have your colon removed?


My quality of life was very poor -- I could eat very few things, I couldn't live independently, I was in diapers (not entirely incontinent, but frequently couldn't make it to the bathroom), and I was in a lot of pain. I tried most of the meds available for UC with little relief. I was starting to experience permanent life-altering side effects from all of these meds.

Not Happy Yet! said...

Did it improve your life? Or were there expected/unexpected disadvantages I should be aware of?


It 100% improved my life. Surgery was hard and painful and frustrating at times, but there is no comparison between my quality of life now and my quality of life with UC.

Not Happy Yet! said...

If this is the only "cure," why should I try so hard to keep my colon?


I don't believe that colectomy is a cure for UC and I think many people here who have the surgery will agree with me. If I could have used medicine to reach remission or even an acceptable quality of life, I would have done that -- I was doing loading doses of high dose Remicade right before my surgery and I was very keen on having it work! There are risks associated with surgery and there are poor surgical outcomes. There are downsides to every treatment, medical and surgical, and you have to pick the path that has the highest net positive expectation for you. Remicade and even prednisone didn't work for me, so the choice was easy.
Posted 12/26/2014 3:23 PM (GMT 0)
Thank you!
I'm just so sick of the drugs and I can't go anywhere without diapers and NOTHING seems to work. Only marginally and not for long.

I know there are a lot of other things to try, but just wondering if it is worth keeping on trying...

We are going back to the beginning of the year so I have to meet my deductible again... Not the biggest consideration, but still. Being sick is EXPENSIVE!
Posted 12/26/2014 4:16 PM (GMT 0)
I didn't have much of a choice left in the end but to have surgery. No quality of life, very ill, meds failed, daily incontinence and missing out on my family and life in general. So happy I did this.....zero regrets!
Posted 12/26/2014 6:14 PM (GMT 0)
Lots to consider.
I have just felt so bad so long...
Posted 12/26/2014 8:15 PM (GMT 0)
I had so many problems with medications not working or side effects, not to mention other problems from any number of complications between meds and just my physical being.

I am totally happy with my surgery, yes I have to use the washroom more then when I was perfectly healthy and I do need to look after myself(making sure I drink enough fluids and what not).

I had surgery when I was relatively healthy only because my surgery date allowed me time to get healthy and with luck I was in remission and doing very well. I did worry since I was healthy at the time if it was the right thing to do, although I kept thinking what happens the next time I flare up? I was in such a bad place and prednisone not working anymore I couldn't risk going into another flare. Being healthy made the surgery so much better, in the hospital I was with many people who had emergency surgery or who were unwell before their surgery or on pred and they had such a hard time recovering it was terrible. I felt bad for being in such good shape to start off but it made my recovery so much better.

I love my life now, it's not the same as before I got UC but it's better then the 6(ish) years I dealt with it. I feel the best I have in a long time and regret nothing.

Not everyone is like me though and there are always complications etc people are different, but I honestly believe if you're thinking about it and nothing else is working, getting the surgery done when you can and being healthy is so much better.

Good luck with your decision and I hope some of this helped.
Posted 12/26/2014 11:34 PM (GMT 0)
My non-surgical choices were between staying on high doses of steroids or dying in excruciating agony from toxic megacolon. My colon had gone rogue: it was severely toxic. Only continuous steroids could suppress the symptoms, but they didn't heal a single, solitary millimetre of my colon.

My situation isn't as bad as Damien's, but I kinda relate to what he is saying. I certainly would far rather still have my colon and be in remission on Remicade. Remicade was a complete bust though; might as well have been on saline infusions for a whole year. In fact maybe that was the NHS's new way of saving money.... ¬_¬.
Posted 12/27/2014 1:44 AM (GMT 0)
I was diagnosed with ulcerative proctitis in 1998 at age 52. During the twelve years I suffered with UP, I did enjoy some remissions. However, from 2003 until I had a proctocolectomy with end ileostomy in 2010, my disease had progressed to a point where I had become prednisone dependent for two years straight. The medications I tried to no avail were 6MP (for seven years with NO improvement), then Remicade and finally Humira. I developed antibodies to Remicade after my third infusion. I then tried Humira, but no change after three months. I reached a point where the medications were killing me. Prednisone gave me uncontrollable high blood pressure and type 2 diabetes. The increased dose of 6MP (before the biologics were introduced) affected my liver and pancreas.
I chose to have surgery in spite of my GI advice to try more biologics. At the time of surgery I was 64 yrs old and very ill. It took me a good six months to fully recover, but, would I do it again? In a heartbeat! I now have my life back. Before surgery, I took 17 - 25 pills daily plus rectal meds. I now take one pill a day and that is for my well controlled blood pressure. I no longer have diabetes. I do have full blown osteoporosis, thanks to the prednisone.
You may be thinking...."Should I go ahead with the meds or just have surgery?" Only YOU can make that decision. I know a few people who have their disease well under control with Asacol, and rectal meds and are happy to be able to enjoy their lives. I didn't have that option. My life revolved around trips to the bathroom, debilitating cramping and bleeding. I missed many important events due to my condition. My husband and I became grandparents for the third time in August and I am delighted to spend time with my new grandson. Our older two grandchildren are now teenagers and I missed out in so many important events in their lives because of this disease. I feel like I have a new lease on life.
Posted 12/27/2014 2:29 AM (GMT 0)
I "fought" off surgery for over a decade of time in which I had full blown flares a couple times a year and miniflares ten times more often, all the while managing to fake a normal life but with constant pain. Only pooped in my pants four times or so in that time but the constant pain, fatigue and insecurity robbed me of enjoying life to the full. Eventually threw in the towel as biologics failed me and had unpleasant side effects. End ileo was choice for me, started off headed for 3 step jpouch and was so pleased with ileo quality of life that any thought of risking a jpouch was quickly abandoned. Though I tried everything under the sun including lots of far out alternative things such as fecal therapy, worm therapy, and easier stuff like LDN to no avail, I can hands down say that I wish I had tried surgery at least 5 years, maybe 10 earlier, but hindsight is 20/20 and I didnt know how trouble free, for me, managing an ileo would be. The tough part was enduring the surgery but it is not really harder than any ither major surgery, and after 2 months the major healingwas almost all over. My quality of life is basically pre-UC now and I have resumed things like tennis and biking that I largely dropped altogether during my last ten years of UC.
Posted 12/27/2014 2:32 AM (GMT 0)
There is no accurate way to survey all the variables in the decision making. Each case finds its own path. I used to wish for just the right diet, drug or moon phase to make this disease go into remission. Remission with Remi was good, if you count 8 hospitalizations for infections as insignificant. My girl gave each idea it's due, and in the end retired her colon to the scrap heap. We are too new to give advice on surgery, but can say that the future has never looked brighter. The chronic pain, drugs, and stress took their toll. It changes who you are, and in the formative years, changes you even more. The constant fear, pain, and dashed hopes keep people off kilter. I have seen the real gal who is my daughter now that UC is (hopefully) gone. Pain from surgery counts, physical alterations count, but none of it seems to compete with the daily grind of chronic pain. Just my 2 cents. The journey isn't over, but the trek thru the desert is.
Posted 12/27/2014 2:50 AM (GMT 0)
Btw, I often post after asking my D's opinion. Today I asked, just 2 wks post the worst of the "ops" if she thought it was worth it. She said she had no regrets, that she didn't know how sick she was until she felt well, that she didn't realize how many decisions were influenced by being the sick kid... I know I am just the mom,so I thought I'd add a bit. It was hard seeing her so very sick, and I thought losing a colon a barbaric approach, but she knew deep down that it had to go. She was lucky to not be too sick to make it work, and to be in a major IBD center with experienced doc's.
Posted 12/28/2014 3:24 PM (GMT 0)
I would suggest NO ONE wants a bag but our Quality of life and recommendations from our physicians dictate what is best for the future. In my case after 20 years of U/C the team of Dr.s said the colon was like raw hamburg from the exit up the next two feet and the meds did not work any longer so the end ellio was a blessing.
I have never regretted that move and I have had it for over 14 years now. I think you can see from the replies that generally more folks are happier than the few who are not.Good luck when you are ready.WaterMaster
Posted 12/28/2014 6:47 PM (GMT 0)

Damien H said...
I got an elective sigmoid colostomy after spending five years with a neuro disorder that caused me to have 15 BMs/day. My life was already a lot worse than the average Crohn's patient, yet the ostomy was still a huge step down in quality of life. It barely outputs, solid food is excruciating and I smell like feces 100% of the time. I would kill to have Crohn's and take medication for it, even with the harsh side effects. That's still a much better life than I have with this ostomy.

When you get ostomy surgery you play Russian roulette. And you can't unshoot yourself in the head.

Omg. I can't believe someone says something like this. Clearly you don't know anything about Crohn's disease. It's not like you take you medicine and be healthy. Oh i wish it was, mayby the i wouldn't go through 2 stoma surgerys and heading for my third because i have fistulas all over the place and even that darn stoma didn't help. And yeas, i take my medications, including Humira. But it isn't helping. I have very severe crohns that affects everything i my life and even these stomas haven't help along with the midecations. Is it nice to have three holes in your stomach where the feces come? No. I can tell you that.

Sorry but i just hate these comments when someone doesn't even know what crohns means. At least it sounds like that.

Peace!
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