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why do we hang on so tightly?

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Ulcerative Colitis
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Posted 4/7/2008 10:42 PM (GMT 0)
to our diseased colons? It's puzzling, sort of. Ii mean, it's a non-essential oragn. If we can't control our disease with meds, why do we insist on taking more & more meds, new & potentially dangrous stuff that hasn't had any real testing re. long-term effects? I'm truly curious.... do you think it's because the surgery requires an external appliance, either lifetime or for a few months? Or is it the fear or any surgical procedure? Since I've been posting on this board, I've read so many posts from people complaining about how UC robs them of their jobs, significant others, ability to travel, ability to eat, their lives! And since not one reputable doctor will tell you "This is a cure....", why don't we all just opt for surgery sooner rather than later? The stats are 30-40% of UC patients will need their colon removed. I just wonder at the vehemence of some peole about surgery. Especially after we read the posts from people who've had it done! And they have no complaints, for the most part- I've never heard one person say they regretted having their colons removed. Tell me people- why do we hang on so tightly to a diseased, non-essential organ?
Posted 4/7/2008 10:51 PM (GMT 0)
I've been wondering the same thing! Seriously, why keep it when it causes such pain. I know it's a major organ, and a major decision. But this is life too. It's not meant to be spent tied to the bathroom and in pain. I'm VERY ready to be done with the drugs, done with the pain, done with the anxiety. It's time for me to start researching surgical options. If this flare is still around in this capacity next week, it'll be time for talking to the doc about my options.
Posted 4/7/2008 10:54 PM (GMT 0)
Because once it's gone, it's gone. It's an irreversible decision, sort of like jumping off a cliff. I think that gives anyone pause. When I was so sick, I was seriously considering it. What held me back was the horrible thought that I'd have surgery and then six months down the road they'd find a cure. Plus, of course the inherent risks of surgery.
Posted 4/7/2008 11:03 PM (GMT 0)
I agree- but having a chronic disease that there's no cure for is also irreversible. Taking all sorts of meds & potentially causing our bodies damage could also be irreversible. Know what I mean? It's just odd- if it was a diseased lung/kidney/liver, would we hesitate to get it removed?  I have that thought about the cure being right around the corner, but really, that could apply to any disease that requires organ removal, cancer, liver failure, etc. For whatever reason, it seems like the colon removal is a huge no-no. It's got to be the bag part of it- that's my take.

Posted 4/7/2008 11:03 PM (GMT 0)
I was wondering the same thing recently. Then I thought about it more. I am scared. I have heard of people who ended up with severe scar tissue afterwards, who were in so much pain that they needed to take strong pain meds daily and were still on Remicade. I knew another man who had the bag, I think he had CD, but anyways he used to get the Remicade with me and he obviously was still sick, he told me he was. So I have those fears in my mind along with the chance I may have CD, also that my colon doesn't have a single ulcer, just my rectum... I know the colon is the culprit, and if it was full of ulcers it would be easier for me to want to rip mine out. I also have this fantasy that my disease will burn out, or there will be a cure, or a miracle. Surgery is a huge deal. It's something that once done is final. Then hearing how with the j pouch, I will go to the bathroom about 7 times daily, that doesn't seem that great. Then there is a risk of pouchitis. And just recovery from major surgery like that, period... Those are the reasons I have decided to exhaust all reasonable options before having surgery.
Posted 4/7/2008 11:12 PM (GMT 0)
I've been ready to yank this puppy out for the past 2 years but I hang on because I will go into remission thinking ok, well it isn't that bad. But then a flare will hit and I say I want it out! But then in remission again and repeat the cycle. I guess that even though I want to be done with it, it scares me at the same time. It was the same thing as my endometrial ablation. I would tell myself that my cramps weren't really THAT bad until the next month came and I was both flaring with Uc while in excruciating pain with my period. I had the ablation - wondered what the heck did I do???? Because the pain was intense after the procedure but now that it's been 6 months, I feel great. No more period, no more pain, no more hormonal related flares. I tell myself that if and when I flare again, I am going to persue the surgery angle in depth with my GI. Because honestly, I am 38 and I don't see myself struggling with this disease and the meds until I'm 80. I would rather have the surgery when I'm relatively young then older and healing will take longer.
Posted 4/7/2008 11:33 PM (GMT 0)
We are sooooo at that point.  Especially when you read about the horrible possible side effects of some of the medications.  I will admit though that there is something scary about having a part of your body removed, but it's funny how we accept the possible side effects of the medication thinking the odds are small, but the complications from the surgery freak us out.

Posted 4/7/2008 11:36 PM (GMT 0)
If the Remicade fails me and there's no other effective new med, I'll be scheduling surgery. For me, I've also had three other surgeries in the past two years, and it feels like I'm always recovering from surgery. Makes it even harder for me to make that decision.
Posted 4/8/2008 1:49 AM (GMT 0)
Not all are ready for surgery .... suffering is subjective.

I don't understand why people don't try rectal meds.....and would rather be on pred.

Some still have to be on meds once their colons are removed ...rectal anyway...so, try them now.

I do know that the PSC that I have wouldn't go away if my colon was removed...so it wouldn't be something I'd consider unless I had to exhaust the meds that I could tolerate. I wouldn't take meds that made me feel crappy...so, the colon would be out faster if it came to that point.

quincy
Posted 4/8/2008 2:53 AM (GMT 0)
Just because there isn't a cure yet doesn't mean there won't be one...even in your life-time and to be honest, my MIL had a temp ostomy because of her diverticulosis and she HATED wearing that bag and could not wait for the reversal, she had constant probs with infections, the glue, the messes the smell, the constantly having to empty...she said she'd never wear one again...so it's different for all...there are pros and cons to both sides.

It should also be a personal choice, not one that should be forced on anyone afterall it's our bodies, our life.

:)
Posted 4/8/2008 3:25 AM (GMT 0)

 It's puzzling, sort of. I mean, it's a non-essential oragn

Non essential to life,  well yes sort of.  To live without it you either need an internal pouch or an external bag and surgery I dont put the colon in the same catagory as wisdom teeth, it is a very complex organ which frankly is not that well understood, really a world of its own populated by trillions of micro organisms,  so we really dont know how essential it is. Ill keep mine, thank you very much, as long as I can.  But I agree there is a tipping point and everyones tipping point  is different. 

Posted 4/8/2008 4:43 AM (GMT 0)
I was always afraid if I got my colon cut out then my UC would turn out
to actually be Crohn's.
Posted 4/8/2008 8:50 AM (GMT 0)
I was always afraid if I got my colon cut out then my UC would turn out
to actually be Crohn's.

+1
Posted 4/8/2008 1:17 PM (GMT 0)
Having been on both sides of this issue I can tell you why I hung onto my colon for so long. I had heard horror stories of life with a jpouch and everyone made it sound as if life post surgery was just a compromise and that it wouldn't be better. I knew that I could be well with a permanent ileostomy but I didn't want one. I couldn't imagine backpacking (with no potable water) and having an appliance. It wasn't until I actually met a jpoucher face to face and realized that my GI was wrong in his assessment of the surgery and that there was a good life without a colon. I think that's why thousands of us post surgery now say we wished we would have had surgery sooner.

There are thousands of colonless people out there, some had jpouch surgery 25 years ago and are living full productive lives in excellent health. I hope to continue to be in that group.

Sue
Posted 4/8/2008 1:56 PM (GMT 0)
If I was miserable I would definitely have mine removed and hopefully be able to get the j-pouch. I'm not to that point. Remicade has made me "normal" again. If it stops working l would try Humira and then if that doesn't work I would schedule the surgery. I refuse to stay on prednisone. In addition to all the things it does long-term to your body, I can't stand the weight gain and moon face. I didn't realize how bad it was at the time but those pictures still haunt me.
Posted 4/8/2008 3:48 PM (GMT 0)

I suspect that if I had my colon removed that I'd have another type of auto-immune disorder. For me, the colon is the place where I am having symptoms of a much larger problem. It use to be asthma, where my lungs and sinuses gave me grief.

Posted 4/8/2008 5:48 PM (GMT 0)
I think the mere thought of surgery is scary, or at least it is for me. It's something I would avoid as long as possible, but something I would consider if necessary.
Posted 4/8/2008 6:18 PM (GMT 0)

Let me share my experience with colon surgery. Hopefully it may shed some light on this subject. I suffered for years with diverticulitis. Was hospitalized 3 or 4 times because of it. Finally I said enough is enough. I elected to have the diseased area removed. I went into the hosp. Mon. morning Feb 10th had the surgery released on Fri. morning. I must admit it was a breeze. Slapped myself in the face for not doing this sooner. This was great, finally no more worries. I was FREE. Until 3 months later. This surgery caused an adhesion. Total bowel blockage. I was again admitted into Hosp. spent 10 days with tubes coming out of every part of my body. Had to have surgery again to clear the adhesion. Not fun. Spent another few months recovering from that. It was shortly after that I was dx with UC. I was also informed that because of now having 2 abdominal surgeries the chance of adhesion's were now greatly increased. They could never develop again or at any time in my life one could pop up again. In my opinion these surgeries had a major impact in my developing UC. As we all know each one of us is different. What happened to me doesn't mean it will happen to you. As far as ELECTING to have my colon removed I will exhaust all other option first. EVERY ACTION HAS A REACTION. My reaction is surgery will be the very last choice.

Hope this may help some to understand why I am hanging on so tightly.

Good health to all.

Dx Pancolitis 3/2004 - 6 Colazal daily (Generic). 90% Remission.

 

Posted 4/8/2008 6:35 PM (GMT 0)
I have had three surgeries in the past and I quickly realized that not all surgeries are perfect...even when successful. So before I reach the state of mind where I think I need it, my condition will have to be at it's all time worst. However, I can't see that happening since I have found a way to control uc...now I just need to find a way to rid myself of it....sigh, the experiments continue.

NBT
Posted 4/8/2008 7:21 PM (GMT 0)

I agree with many of the comments others have made... surgery's never perfect, the colon serves an important purpose, removing it doesn't guarantee a life of health and happiness, etc. For every person who's come on here with a happy story of quick recovery and freedom, there's probably one or two others who've had complications, misery and immune problems cropping up elsewhere.

Removing a major organ just isn't a positive, healthful solution to me, unless there's no other choice. I hated being told, "You've got a chronic disease. You'll never be well. You'll remain on medication until you get sick enough to have your colon removed," as my first GI told me. I may have a chronic health condition that needs to be managed and adapted to (similar to being diabetic), but I am NOT constantly sick or disabled. In fact, I've been pretty much in remission for years with only minor upsets. Rather than viewing my colon as the problem, I wanted to discover the many causes and triggers of IBD and attempt to remove them. Rather than taking powerful immunosuppresants, I decided to look at other natural approaches that would build up my body, balance my gut ecology, remove offending foods, and try to improve my health rather than suppress (or remove) the symptoms. Is it a miracle cure? No. Is it fast and easy? No. Does it require alot of research, trial and error, sacrifice, changes in lifestyle? Yes. Is it worth it to me to be mostly symptom-free and have all my organs intact? For me, yes.

Posted 4/8/2008 10:54 PM (GMT 0)
This topic really intrigues me- there are no wrong answers, everyone's answers are "right", know what I mean? And the range of feelings on surgery is so varied.... I know for myself, I am looking forward to it. I had an accident on the way to drop my daughter at preschool this morning, had to pull over & run behind a tree...then had to clean myself up as best as I could with my emergency car kit & go to work! I'm 5 weeks out from my last high-dose remicade infusion. I'm having some funky things going on that I think are related to being on immune suppressants so long. I'm tired of having to plan what to eat at our family dinners around what time I have to leave the house the next morning. I've got a nasty RV fistula that will not close up. My most recent colonoscopy was....just bad. Do I think surgery will be easy? No. Do I think it'll solve all my problems? No. Have I done everything I could to try to go into remission before opting for surgery? No. Have I radically changed my diet? No. And can I really tell how I'm going to feel with a permanent ileostomy? No. The only thing I am sure of is that I choose not to go on living like I have been. Right now, the reasons to get surgery outweigh the reasons not to get surgery. It'll be interesting to see how it turns out- I'll be posting the whole way thru! tongue
Posted 4/8/2008 11:17 PM (GMT 0)
I definitely think it is best to wait to have the colon removed until all other options have been tried. My mother was diagnosed with Ovarian cancer a couple of years ago, and long story short, she had to have about a foot of her colon removed and her (digestive) life has never been the same. She has constant problems. I know that UC is terrible, but removing the colon is a drastic, irreversible step.
Posted 4/9/2008 1:49 AM (GMT 0)
after i had surgery, and started thinking about how i was living before i started wondering why on earth everyone wasn't just getting their colon out. I didnt' try all the meds, and i didnt' try a single rectal medicine, to me that was worse than surgery, or even being sick. I did try remicade and it worked great at first, but in the back of my mind, i always knew it could fail, at any time, and there i would be sick again. And that's exactly what happened. i actually went in aksing for surgery and my GI talked me into remicade, i really wish i hadn't done that.
I did have the worries that i would wake up from surgery and there would a news flash that a cure for UC had been found, or that there would be a cure in the next year. But i also thought, i might waste my whole life waiting for a cure that is coming next year. I just couldn't see living the way i was living, not being able to eat, always worrying about where the bathroom was, i hadn't gotten to the point of having accidents in public yet, but that might have been becase i was taking tons of immodium everyday, not getting to go where i wanted, when there was a sure fire cure for UC, and while I knew there were down sides to surgery, and i also knew that i might hate it, i chose to take the leap, because i knew that i hated life with UC, i mean that was something i knew for sure, i was miserable and missing out on everything, so worse case i would just be miserable without UC. I did have some problems at first wrapping my head around having a bag, but now it's just second nature, i will have had my bag for a year in 9 days, and this has been the best year i have had since i got sick in 1999. It hasn't been all a walk in the park and having surgery sucks, but that pain is temporary.
Posted 4/9/2008 4:45 AM (GMT 0)
Dx in late 2001 w/ UC. I have never been in a proper remission. BMs number between 9-20 with 14-16 being average. Have been as low as 3 for short periods of time and as high as 26 for days on end. I kept thinking the next treatment, the next medication, the next Doctor or there would be a cure!
I am scheduled for surgery in less than a month. I decided on the day of a Remicade appointment when I had a BM accident while trying to find a parking space in the parking garage. Cars ahead and behind me, no where to pull over and take care of things, so I grabbed my emergency kit (garbage bags and towels) and placed a bag and towel under me, yanked clothing down and covered my lap with another towel for modesty's sake and let the BM run it's course while I had to continue in the snake of cars looking for parking places and then clean up after I had parked.
Not my first BM accident away from home, but my most 'public' one and furthest from my home.
Reading these responses is frightening me terribly. I was getting very excited about the changes (positive changes) surgery would do for me. At this point, I still think any change will be good. I just have to prepare for the worst and hope for the best. I cannot keep going on as I have been. It isn't life when you spend it on the toilet.
h
Posted 4/9/2008 1:14 PM (GMT 0)
If I were having accidents or a ton of BMs every day I would have the surgery in a heartbeat. Good luck!
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