Surgery?

Hi Everyone,

Long-time listener, first-time caller.

I've been reading about the benefits of surgery and lately I've been thinking about it myself.  At my last doctor's appointment, he briefly mentioned colectomy, and I have another follow-up visit next week.  I think I'd like to discuss it with him some more.  I have some questions, though.

I've had UC for about six years and it was always kept in check by smoking.  I had periodic flares when I took antibiotics.  Worst case scenario, bleeding for about two months.  I quit smoking last January and last April took antibiotics, entered a flare, and here I am more than a year later still bleeding.  Colonsocopy last May showed chronic ulcerative colitis across the colon.  I have about 4-5 bowel movements a day, mostly formed.  Having to go to the bathroom is not a big deal to me. 

The big deal is that I'm totally exhausted.  I've gone from being a high-functioning person to feeling like an invalid.  The joint pain and muscle soreness and all the other symptoms just keep getting worse, too.

I'm taking Asacol (2x3/day) and I won't take steroids or other drugs.  I have a hard time complying with rectal meds.  The Asacol doesn't seem to be working that well.

As I contemplate surgery my major goal is to eliminate the fatigue and other extra-intestinal symptoms.  (Not bleeding would be nice too.)  I'm not particularly concerned about extra trips to the bathroom. 

I'm trying to balance the idea of surgery with 40-50 more years of ulcerative colitis.  For those of you who have had surgery:  Does the fatigue go away?  Am I nuts to contemplate major surgery for these reasons?  Is it reasonable to think that I could make it through the two-step process in three months?

Any advice or suggestions appreciated!  Thanks.

Welcome Seconder,

First off, I don't think you are nuts for wanting a permanent fix to this problem.  I am not sure what the statistics are but i do know that more then half of the surgeries done for UC are for "quality of life" issues not because of a lack of treatment options.  That doesn't mean that we don't have "real" health issues it is just that we were able to do it on our schedule not on the schedule of an emergency.  Each person has their own fix for this crappy disease so what may seem drastic to one person is well within the limits of normal for the next person.

With the energy coming back, I have seemed to notice an increase but I am only one week post op for the ileostomy.  Mine will be a three step if I elect to do the j-pouch since I was on pred so long.  My surgeon wanted my tissues to gain back their strength when we get off of the pred before making the pouch.  The energy may just be my excitement of a new life after UC but I can say I did have a feeling of being "healthier" or "cleaner" right after surgery.  Like the internal argument in my gut was finally done.

From the research I have done if you are able to do the two step it should be able to be done in three months.  As long as you haven't been on prednisone for a long period of time and your other organs and tissues are in good shape they should be abe to build the pouch on the first surgery then between two and three months later do the reconnect surgery.  I am sure that the time frame varies with each surgeon but that is the average time frame I have found in my research.

I would definitely talk to your doctor about it and get his take on it with your reasoning.  He will be able to set you up with a surgeon if he is unable to answer your questions.  I can completely understand with the taking meds for the next 40 plus years.  My GI was the one who pointed out that surgery would be the fix for that.

John

Thanks for the advice.

To hear that the fatigue goes away is reassuring.  To hear that one is able to go out and do things while recuperating is even better.  I've had to cancel my longstanding racquetball game the last two weeks, I've cut back on running, and I just cancelled a weekend trip because I can't muster the energy.  I feel like a zombie at work and it's a demanding one.  I'm taking two short naps now to make it to 8-9 pm to go to bed. 

I was reluctant to think about surgery until my neighbor had to have an emergency resection.  I thought he'd be laid up for months.  He was back to work three or four days later and feeling great a month afterward.  I understand there's a big difference between the two surgeries, but that was also reassuring.

My biggest desire -- as slim points out -- is to do this on my schedule.  If I can't do it all in three months, then I have to wait a year, which isn't a big deal to me as long as it can be done in that timeframe.

Thanks again.

Can anyone else comment on the extra-intestinal effects going away after surgery?

Seconder, I agree with what everyone has said so far and I really hope you find the reassurance that you're looking for! I certainly understand the fatigue problem... I would love to get back to doing yoga, jogging, ANYthing, but I'm either too dizzy, weak, or just the movement gets my bowels hurting and I can't do it. And then I know not exercising makes me even worse. I'm planning on buying a bike soon, maybe even today if I have enough $$ left over after bills, I'm hoping since it doesn't involve much jostling around or stomach movement, I should be able to do that with no problem. It's really quite frustrating and annoying though.

Hello: a surgoen in my town does colon surgeries laparoscopicly. Either total removal of the colon or total removel of colon and rectum. The surgeon makes three small incisions around the navel for the insurments and one three inches long just above the pubic bone. The colon and rectum are removed through this opening, also through this opening he will connect the small intestine to the anus. the average surgery time is 163 minutes and the average hospital stay is 5 days. He has done over 50 of these procedures. His study was published in the Bridgewater NJ. BASED American journal of surgery in may. Good LUCK!

My husband has been considering surgery as well, and we've been doing some research. We found (thanks to this forum) a very informative photo diary kept by someone who went through the ileostomy and j-pouch surgery. For us, it was great to actually see what things might be like for him if he opted to have the surgery.

http://www.flickr.com/photos/markandmegan/sets/72157600800413847/

Best of luck in whatever you decide.

For those of you who have already had surgery, was it done laproscopically or the "regular" way?

Thanks for the responses and info. everyone.  Definitely some things to talk about with the doctor next week.

It's the uncertainty of the disease that drives me nuts.  Yesterday, I had a great day.  Two bowel movements, little blood.  I felt energetic and made up for lost time and got a lot of work done.  I even painted a room that I'd been putting off.  I thought I was nuts for thinking about surgery.

I woke up with cramps in the middle of the night, spent all night tossing and turning, and have a lot of urgency and cramping today.  So much for that.  I feel like I'm always waiting for the other shoe to drop. 

So, although my symptoms seem minimal compared to other people, I do think it's time to seriously consider surgery.

(I also want blood work to see if that could be the cause of some of my problems.)

Thanks.

 

Seconder, you may have posted this somewhere, but why are you not going to try Remicade? Or prednisone? I guess I can understand why people avoid prednisone... but I also know that when I am really flaring badly I'll take anything the doctors throw my way- if they claim it will help, I'll try it!

I am curious why your doctor would think you would have problems with malabsorption or dehydration with surgery? Is there something unique and different about your physiology? Very few people end up with either of those problems so I don't think that is reason enough to discount surgery if you ever have to make that decision. I agree with you on staying away from prednisone!

Sue

Okay, you can let him know that most people GAIN weight after surgery because they are finally healthy. Those that have malabsorption problems tend to have had their ileum removed which is NOT a part of the jpouch, k-pouch, or ileostomy surgery. Some ostomates do struggle with hydration, especially shortly after surgery but it often resoloves itself after a period of recovery. My hydration is fine most of the time but I do pay close attention to it during extreme physical activity both in and outdoors. I think these are great points to keep in mind and it's good that your doctor point these things out.

Sue

you should probably get a second opinion if you aren't sure of what your dr is telling you.
I think that, rarely, people have problems with dehydration, its' just because their bodies are processing their food very very quickly, but usually with a change in diet and adding some immodium to give you some extra time to adjust it clears up. I watch my liquid intake very very closely, and you can tell when you are startign to get dehydrated, and then you just drink, drink, drink, lol.
I def agree with suebear about the weight gaining thing, lol. That's all i have done. Since i can finally eat, i am makign up for eight years of not eating. I love to eat nachos, and my sis was laughing at me the first time i had some, cause i was just eating them like they werent' gonna ever be another tray of nachos ever, and i said, hey i got eight years of nacho eating to make up for!
there are a few nutrients that absorb mainly through the large intestine, so you can either take them as the pill that dissolves under your tounge, or if the pill is crushable, you can just do that.

I don't really have a plan, comedydork.  Keep on truckin'?

I'm around hundreds of people every day, and someone is sick all the time, so my doctor and I are both reluctant to start tinkering with my immune system.  At certain times of the year, I have no choice but to be at work, so I don't get sick days when I want them.  That's a big consideration.  There are long stretches when nothing short of death can keep me from work.

I also hate going to the doctor, so I see any surveillance as a huge imposition.

I'm leaning toward surgery.  As it happens my mother called yesterday to see how things went with my appointment.  She had read the uc column in the nytimes over the weekend, and out of the blue she suggested I get surgery before I start messing around with the heavy-duty drugs.  That's a change in her opinion.