What has been your experience with total colectomy?

[muppet]

Good, bad, indifferent?

Has anyone had a total colectomy and then had their disease start back up again in the small bowel? I'm curious to know how often that occurs (though I'm sort of afraid that anyone it happened to might not be in the shape to post on forums for long...)

My daughter is running short of options and I'm freaking out a bit. If you want a complete history I've painstakingly typed it all out at http://www.sarah-story.com. It's just a wordpress blog. No ads, no solicitations, or anything like that. I don't want people to get the idea that I'm spamming it's just easier to say "go read this" than to type it all out again and again.

 

[mlusti1]

I had a total colectomy this past March and I've never felt better (well, at least not since I first got sick about 8 years ago)! It's only been a few months, so I can't say what will happen down the line. But after 8 years of challenges and obstacles, I feel great! I have an ileostomy and a bag right now - I haven't had my reversal yet, and that won't happen for a while yet (mostly because of scheduling difficulties). I'm a bit nervous for what will come after the reversal - my understanding is that is the most difficult part of the whole process. A lot of adjustment and patience...And it's frustrating since I've been informed that this is definitely not a cure - it could come back at some point in the small bowel. But who knows when?! My feeling is that if this can improve my quality of life (even temporarily), it's worth it. And it definitely has! Being able to run errands and spend time with friends without wondering where the nearest bathroom is, is one of the most wonderful things in the world. Something I definitely used to take for granted because I got sick 8 years back.

I know this is a tough decision, and definitely not an easy life adjustment, but if you're looking for some idea of personal experience, mine has been positive.

Lots of luck to your daughter. She's had a tough time, but she is obviously a strong girl! Keep it up!

 

[Welsh-bird]

Hi Muppet, sorry to hear about your daughter.
I had a total colectomy in March of this year. My diagnosis up until that day was UC and had been since 1999. It was only then my path reports changed the original dx to Crohns. I still don't regret having had the surgery. Life with Ozzie is easier than the endless bathroom trips that I was making, sometimes 25+ a day and throughout the night. Life with Oz is far more stable. My Crohns is now in my Duodenum and mouth, no chance of removing the later! (although some may argue for it). It does suck that it's come back elsewhere, and that what I thought was my 'cure' wasn't quite! None the less, it's not going anywhere so I accept that!
I know Amy (Ameslouise) has an almost identical path to mine- long history of UC for it only to be changed following surgery. Not too sure how common this is though.
Life with an Ostomy is 100% easier than with a diseased colon. Takes some time and adjusting, and there are bad days initially (I still get them now), but for the whole, lifes better without my colon.
Wishing you all well.
And x

 

[muppet]

What meds are you on, if you don't mind me asking? How are you treating the "residual" Crohn's? Didn't you have a rough time, recently? I don't mean to pry, I'm just trying to make the most informed decision possible.

 

[Melody]

I had my surgery 3 years ago...and I felt fantastic since than BUT lately the pain and swollen belly is back and all the extra meds....hate the steroids!! I'm scared to eat half the time cause I'm worried about the consequences after.

 

[sgmpalm]

Total colectomy post 1 year

In 1995 I drank diet Pepsi and later that night had severe cramping and diarrhea. Soon afterwards I had a thick coating in mouth and throat. After that I had an awful tugging sensation in my throat. I suffered tremendously for years afterwards and family didn’t understand and siblings were not supportive. I had to start using bottled enemas which lasted for years, and for years I had severe constipation, saw numerous doctors and had many tests. Finally, after 5 colonoscopies, barium swallow, motility tests, etc., a doctor performed a sitz marker test which showed that the large intestine was not working.

In August 2010 Dr. Sanders Binderow performed an open total colectomy at St. Joseph’s Hospital in Atlanta. A day after surgery I started to have severe abdominal pain. I complained to the doctor and staff dozens of times but no one listened. The doctor told me to “deal with it”. They made me get up and walk around even though I was extremely dizzy and in awful pain with severe weakness. Eight days later I was discharged. Three days later I was taken to the ER where they discovered I had an ileus (blockage). I was taken to the hospital and my stomach was pumped (not fun). Three days later I was sent home. And again a few days later a second ileus occurred and again returned to the hospital for four more days.

Here I am one year later and have long term complications from the surgery. The surgery did save my life and am happy still be alive and I deal with the side effects one day at a time. My blood pressure is high and I have constant headaches. Three were so bad they caused me to panic and sweat. The last time I was taken to the ER and was given injections which took away the pain. I have lots of fatigue which wasn’t present prior to surgery. Sometimes I simply have to take a nap because the fatigue is so deep and strong. I still have constipation and take laxatives almost daily. I also gained quite a bit of weight but no big deal.

I hope this information helps. Please tell others to stay away from aspartame. I don’t want anyone to go through what I went through.

 

[Nyx]

I haven't had a total colectomy (I still have 2/3 of my colon) but I do have a permanent colostomy and my quality of life has increased 100 fold easily. The surgery was tough and I had some complications (developed 2 blood clots in lungs and wound up with a blood infection) but even with that and the 3 month recovery time, it was soooo worth it. I'm not on any meds right now and have had no symptoms of the disease returning so far in any other part of my system. I had my surgery almost 2 years ago now.

 

[QaisarN]

I had a colectomy July 15, 2011 where they attached the ileus to the rectum. I had colonic inertia an unknown sort of name for my failed colon. The surgery was successful in producing bowel movements (which I was not having prior to surgery).

I developed an intussusception where my intestine telescopes into itself at 8 weeks post-op. This is a highly unusual condition and it seems to be elusive. Until they can again identify the location of it, surgery to correct it is nil. But if it goes untreated it can perforate or rupture and is fatal. My surgeon is reluctant to go back in and I don't blame them. But I really need to get all this GI stuff under control and get on with my life.

He mentioned the possibility that my small intestine may also be dysfunctioning (as the large intestine had done before) which is a horror I would never wish on anyone. I really hope it is intussusception as that can be fixed with surgery, the latter I have no idea how it would be resolved. I am facing this fear too. I had no option but a colectomy and so now I have no option but to face whatever happens next.

 

[ameslouise]

Hi Muppet - I just read all of Sarah's story on your blog. Wow, you've all been thru so much!!!

I just posted kind of the same thing on someone else's surgery thread, but the thing with this disease is, you never know. Sarah may have her colon removed and be free of symptoms for a a long time. Or she may have a few good years and develop CD in her small intestine. They could reattach her to her rectum this time, or give her a bag right away. You never really know how it's going to turn out, and there are no guarantees.

But in my opinion, I think surgery should be looked at as a viable treatment option, not just a last resort. Easy for me to say- I might be singing a different song if I was trying to choose the best option for my child. But in my own case, surgery has made me feel drastically better and given me a quality of life I haven't had in years.

I hope you are able to come to a decision you feel comforable with, and that Sarah can start feeling well very, very soon.

Good luck. - Amy

 

[jazzygirl52]

45+ years colitis/crohns and April 2011 Total Colectomy Colon Cancer

I survived 45 plus years with what was first diagnosed as colitis, then eventually switched to crohns. Then diagnosed February 2011 with colon cancer. Moved back to MA to get Dana Farber/Brigham & Women's excellent Dr Joel E Goldberg to diagnose/recommend best surgery without automatically going Ostonomy route. Mentally the Ileum attachment to rectum after total colectomy was better and he thought i was a good candidate for it.

Everything was going okay...
It was Preliminary Stage One diagnosis, thank you God!

white foods diet and imodium/benefiber routine to reduce bowel movement frequency and solidify what comes out.

Two weeks ago got bad cold and stomach gas/diarrhea ...and hot flashes. Thought it was just the change and a tummy bug. Doc doesn't know if it's infection or a stomach bug ...a lot going around right now. We are doing lab tests but wanted to see if anyone else had those kind of symptoms develop after the colestomy?

I am so paranoid now about another cancer and am happy to have found this forum...

 

[Club]

I had a total colectomy 16 years ago for UC. Now all these years later they have diagnosed me Crohn's. I feel very frustrated as I thought I was rid of IBD all those years ago! GI has just started me on entercort and imuran. I am not happy to be back on these ugly meds, but what's a girl to do? I pray these meds work and put me remission!

 

[thomas789]

I had a sub total colectomy and can have a reattachment small to the rectum. I am scared to have that done too.. Crohn's doesn't seem to leave a person alone