HealingWell
Search Close Search
☰

Am I crazy to just want the surgery instead of trying all the powerful drugs?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/30/2010 1:37 AM (GMT 0)
I have become very ill with Ulcerative Colitis, which I have had for several years. Around September 14th, I became extremely sick with a flare up of my disease, and after getting progressively worse and making two separate trips to the ER, was admitted to the hospital last Friday because of pain and inability to stay hydrated due to worsening symptoms. I had 27 bouts of diarrhea in 30 hours on my worse day. They scoped me (though not far due to the possibility of perforation) and found that I had severe inflammation in the lower part of my intestine and mild to moderate as far as they could see up higher. The GI said it was pancolitis. Though I am doing a little better because of the IV support (they have me on 125 mg of Prednisone), I am basically not responding to these meds and am facing a tough choice. One is to try Remicade (I don't have time for Imuran... not that I am sure I want that either). The other is to have my colon removed. I am a bit of a purist. I hate drugs and I am not crazy about the listed side effects or dangers of developing other diseases like Remicade-induced lupus, or permanently reducing my body's ability to fight things off, such as cancers and even basic germs. Crazy as it may sound, i am leaning towards surgery rather than more and more drugs. I am sick of this disease and just want it to be gone. I still have to find out a few more pieces of info from the docs to make sure that my pattern of disease would be cured with the surgery, but so far it looks like it would. The doc's want me to be leaning one way or the other by tomorrow. Of course, they are pushing for the Remicade, but my gut feeling is that this is not the choice for me.

I am 38 years old and am an avid hiker, rock climber and backpacker. I work my dream job as a park naturalist for a living. I take people on 3 hour hikes and do campfire and evening programs where I am on stage for two hours. I love my active life and frankly don't want to gamble with some of the potential painful and dangerous side effects of Remicade... even if they are rare and may not show up for years. I am also not crazy about the price tag, or being tied to doing iv treatments every 8 weeks.

My friend, who has had an ostomy pouch for ten years now, visited me in the hospital and showed me her ostomy supplies and described what her life is like. She hikes, climbs and leads an active, normal life. I know I could do it too. No more meds with unknown side effects, no more wondering about bathrooms, no more UC... just the lifestyle I love only with a ostomy pouch attached to my side.

Again, am I crazy for jumping to this without trying Remicade. Any others out there who wish to sing the praises of life with an ostomy pouch?
Posted 9/30/2010 1:42 AM (GMT 0)
I don't think you're crazy at all. In fact, it may be the smartest choice and I wonder if it is every day.

You could also opt for a j-pouch which wouldn't require any external bag but could be 2 surgeries. I would go that route if possible if it were me but to each his own. I've seen plenty of happy people with a bag and with an internal pouch.

Whatever you decide, goodluck and no you're not crazy, just thinking logically. No point in taking drugs for year and years to possibly lose the colon anyway. We are hurting our other organs with the medication.

I wish I were brave enough to do it myself, just not quite ready.
Posted 9/30/2010 1:46 AM (GMT 0)
I am right there with you. Right now I am in remission, but my liver enymes are elevated due to 6mp. So the dr wants to try remicade. I think I am done. It feels like even if remicade does work, it is just delaying the inevitable. I have an appt next Friday with a surgeon at the Cleveland clinic. I am scared but so excited at the possibility of getting my life back. At the Cleveland clinic more than 97% of people are happy with their j-pouch surgery after a year. I like those odds...much better than remicade. Good luck and I can totally understand.
Posted 9/30/2010 2:30 AM (GMT 0)
No, you're not crazy; I wouldn't do Remicade either. I had jpouch surgery 9 years ago because I wanted my life back. I too am an avid hiker; I engage in 100-200 mile international hikes. Surgery has given me my passion back. I just returned from a hike from Mammoth to Yosemite and am heading off to SE Asia for 4 weeks of hiking and biking. I get a bit emotional every time I do long hikes or travel afar. If it weren't for surgery I would have not have been able to see half the world these past 9 colon-free years. I suggest you consult with a top CR surgeon, not just necessarily the CR surgeon of that hospital. I truly believe that my surgeon is responsible for my great outcome; he had done 2000 surgeries prior to mine---of course that is if you are pursing a jpouch. A permanent ileo is a great option too.

Sue
Posted 9/30/2010 2:35 AM (GMT 0)
Not crazy at all. If it came down to it for me, I would rather get the surgery over the scary drugs. BUT, doesn't insurance require you to exhaust all options before surgery?
Posted 9/30/2010 2:39 AM (GMT 0)
     I had the disease for twelve years.  Had a total colectomy and perm ileo on June 28th.  I am still having some problems but hoping they will resolve in time.  Great to be off all that medication.  If I were younger I would go for the j-pouch but I am 64.  My surgeon said I was too old to undergo the j-pouch route.
Posted 9/30/2010 2:57 AM (GMT 0)
you are not crazy!!!

I opted for surgery too, i did try remi, but it didnt work, and i tried it against my better judgement. 

And surgery will cure you from UC, cause once the colon is gone, the UC is gone!  and its great! 

You have seen someone with a pouch so you know its not bad, or gross or anything, just something thats there. Honestly, you will forget about it for a while.  I've had mine for 3 and half years and there aer times when i will sit here and forget all about it, then im like oh no!  and its sooo full, lol

There is no reason you cant do all those things you mention, and anything else!

Insurance does not require you to exhaust all meds, in fact in alot of cases its cheaper for them in the long run.  remi is 5k a time, in a year thats like 50k or something, just for one year.  My whole surgery was about 48k.

Anyway, i only tried a few things, i tried, immuran, asacol,6mp and remi.  I refused to do enemas, and im sure there were other things, but i was just tired of hoping something would work and waiting on it to fail!

Personally, i chose a perm ileo, i didnt want another surgery, and im the kind of person who thinks if something can go wrong it will, so i figured if i got a jpouch i would be one of the few who have a failure with it.

Regardless of which way you go, you will feel better!

Posted 9/30/2010 2:59 AM (GMT 0)
blueheron
I also refused remicade and the other high power drugs. I refused the j-pouch. Have a permanent ileostomy and am happy with it after almost three years. Problems arrive from time to time but all have been solved. It takes trying different pouches to find the right "hardware" you prefer.

Read the ostomy forum. I don't think anybody is unhappy with an ostomy or j-pouch. If you have problems there is an enormous amount of help from fellow ostomates. People that are "there" and have real life experience.

Dan
Posted 9/30/2010 3:02 AM (GMT 0)
I don't know about the insurance thing. None of the doctors have mentioned that. I hope that is not the case! To be forced on Remicade wouldn't seem right.

The reason I am not considering the j-pouch is that due to work, I can't always just dash away to use the restroom and the ostomy seems a little easier to manage in that regard. Not to mention if I am up on a rock climb.
Posted 9/30/2010 8:09 AM (GMT 0)
I think you are making the wise choice. We, as human beings, always cling onto hope and end up making the wrong decisions in hindsight in hopes that things will change. So I've made my decision today while in remission. No pred, no Remicade, no Immuran...

I would get the J pouch surgery though. I can't imagine having a bag attached to me for life.
Posted 9/30/2010 8:13 AM (GMT 0)

Christine1946 said...
If I were younger I would go for the j-pouch but I am 64. My surgeon said I was too old to undergo the j-pouch route.

This is good to know. Thanks for the info.
Posted 9/30/2010 11:29 AM (GMT 0)
While I don't suffer from UC, I have chronic, lifelong multiple bm's now from having my sigmoid and 15" of my colon removed. A situation I'll have unless I change it surgically. I spend hours in the bathroom each day, I've personally worn out so many toilets in this house, we have 3 and 2 have had new handles put on oh every few years. The inards are completely new (some twice and three times since 1999!). It seems as if my husband is always running to Home Depot for yet another toilet repair job, because well I wear the heck out of them! (as long as I eat......and well you can't just live on liquids the rest of your life!).

That said, I had a temporary colostomy after my first surgery, the major one - resection.

I managed VERY well with an ostomy. I could eat a lot more types of food than I can now. Didn't have as many trips to the bathroom either.

My new surgeon has recommended I end this misery by allowing her to give me an inverted colostomy, that I would irrigate once a day (fancy way of saying giving yourself an enema once every approx. 24 hours). The other 23 hours would be stool free (or so she claims). And the best part of what she says is possible - I would wear a large band-aid over the inverted colostomy opening, they're called Am Patches. This is pretty much where she loses me. I am very skeptical this would be as easy to manage as she says.

But when I was given a higher up colostomy, it really wasn't the end of the world experience some people say they are. I remember looking at my stoma and thinking - well I've raised two children, changed hundreds of very messy diapers, have had very heavy periods in my past, I can handle an ostomy and output! And that is just what I did for 2 months. It wasn't that bad.

A lot of people feel that having an ostomy gives them their lives back and they can rejoin the living.

In my case, we now have sub-par health insurance, extremely high individual deductibles, co-pays and then once you meet our deductible, our insurance will only cover 80% of approved claims. They haven't covered anything for our family except in network doctor office bills. Anything more than that is rejected. Sometimes I wonder why my husband has to pay $16,400 per year for this so called health insurance plan. Which is why I do support Health Care Reform. We need it! There is simply no way I could elect to have such surgery, we don't have that kind of money.

Go to the ostomy forum here, you'll no doubt meet some very caring folks over there. Good luck to you!
Posted 9/30/2010 1:16 PM (GMT 0)
One does not need to exhaust all medical treatments before opting for surgery. The UC patient can elect surgery at any time.

Oh, and there is not a "too old" for jpouch surgery. Many have had it in their 60s, 70s, and 80s. What determines it is overall patient health. If there are other medical conditions it might not be advised. I realize this isn't what you are choosing but I want to clear up Christine's note about being too old as there really is no maximum age.

Sue
Posted 9/30/2010 1:23 PM (GMT 0)
Can someone in plain English define what ostomy, ileostomy, j pouch are? If I wanted to have my colon and rectal lining removed, what surgery would I have to have if I didn't want a permanent external bag??

BLUEHERON:
I have been diagnosed with UC for less than 2 weeks, and I'm in so much pain that I'm going to talk to my GI about surgery! You aren't living if a disease is controlling you 23.5 hours out of each day. If you can't sleep, are in constant stomach discomfort/pain, and you are doing everything you can to help you situation-which isn't working-why wouldn't you have the surgery?! Assuming you can afford it.
Immune suppressing drugs, and prednisone carry horrible long term effects that are likely to cause any of us a ghastly way of life later on. If there are strength in numbers supporting positive outcomes of the different "UC curing" surgeries, then I think we all should give it a shot (Unless you are one of those people who doesn't really have the disease to the extent where it dominates your life).
Good Luck and keep me posted!
Somebody please explain the different surgeries to me! I would want no external bag if possible?
Posted 9/30/2010 1:32 PM (GMT 0)
If you want surgery without a bag, research the j-pouch. It's an internal reservoir made from the small intestine. It functions the same as colon/rectum. The surgery involves removing the entire colon and rectum, building the jpouch, and attaching to the anus. Usually there is a temporary ileostomy (bag) until the patient has sufficiently healed (6 weeks-3mos).

An ileostomy or ostomy, is an external bag. Colon and rectum are also removed and small intestine protrudes through abdomen and empties in a bag.

A colostomy is the same but lower down and empties from the colon. Not the best option for a UC patient due to disease continuing elsewhere in the colon.

If you opt to discuss surgery, and if you have severe rectal disease, make sure your surgeon strips the rectal cuff (mucosectomy).

Sue
Posted 9/30/2010 2:38 PM (GMT 0)
Thanks for the simplification SUE!
Posted 9/30/2010 2:51 PM (GMT 0)
I've been on remicade since July of 2009 I have severe uc throughout my whole colon. I have to stop the remicade because while it helps my symptoms I still go to the bathroom alot it isn't healing my colon at all. I can either try humira or a new trial drug called MLN-0002. I'm sick of this too. I asked my doc how long will all these scary meds really work. I will eventually need surgery right and she said you could get acouple years and maybe a new trial drug will be out if not you will need surgery. I don't like the idea of a trial drug(very scary) and I'm scared on the remicade also.

I'm leaning towards the surgery too. UC is really starting to affect my life. I would talk to a surgeon and see what they say. With your job this decision has to be a hard one. Good luck.

Posted 9/30/2010 2:57 PM (GMT 0)
  I too have seriously thought of surgery several times. I am not in  pain but I do have accidents and many trips to the bathroom every day. Then once I am on the toilet I have to sit there forever while my colon spasms. Now on top of everything I am anemic from the small but constant bleeding. I am leaning towards a perm. Ileostomy since it is just one surgery and I have had an ileostomy before so I know what it is like. It sounds so nice to not run to the bathroom praying I dont mess myself many times a day.
Posted 10/2/2010 10:43 PM (GMT 0)
Hard to believe, but I am still in the hospital 9 days after being admitted. The iv steroids (up to 125mg) would not control my flare. So, I had to do a Remicade infusion two nights ago in the hopes of getting out of here. I have firmly decided that I want surgery... and most likely a permanent ileostomy, as I just want to be done with this and don't want any more surgeries or major complications. Now I am only hoping that the Remicade works after an infusion or two so that I can heal up and approach surgery in a healthy state. However, if I don't show improvement on this first infusion, I may be heading to surgery next week as there are really no other options. I have lost so much weight and I am pretty thin to begin with. I did feel a little better today and am finally able to eat some solid food, so I am hoping that this is the Remi kicking in and not just another roller coaster ride. I would sure like to be able to schedule my surgery for a future date when I am healthy rather than being rushed off in an emergency situation.
Posted 10/3/2010 1:15 AM (GMT 0)
Blueheron.....we sat, just over a year ago, exactly in your shoes. My 18 yr old son decided on surgery since he was so sick and his life was completely out of his control. I must admit that it has been a long, difficult year....BUT....the year is over and he is completely healthy..in every way!!. Blood tests come back normal, he has more energy than he can remember and has almost forgotten what UC life was like. There is a light at the end of the tunnel!...Hang in there!
Posted 10/3/2010 3:31 AM (GMT 0)
i think you will be much happier with surgery, its a definite cure and no more of those hospital stays! when you start to doubt your decision, and you will, just remember all the things UC is taking from you.
good luck and yay for being healthy soon!
Posted 10/4/2010 12:06 PM (GMT 0)
Hi! I am in the same boat am about to have a colonoscopy in a week as i am having a bad flare. The doctors have put off my surgery once but after next week I may have  to have it anyway. But my doctor will be doing the surgery where they reattach the small bowel So i wish you luck so I dont have to have a bag and I will also  be cured for ever.  I have had my colitis for 10 years now and I am totaly over all the constant flares. I feel as if i have not been in remission much in my ten years. Good luck with the surgery if you decide to have it done I hope it is everything that you wanted and it makes a big difference to your life. 
✚ New Topic ✚ Reply