I am so sick of this I am going to begin researching surgery

Hahah... "The good news is, I saved a ton of money on toilet paper by switching to ileo!"

Hahah ;)

Beth,

I am new to this site, but I couldn't help replying to your post. I am actually scheduled to have the total proctocolectomy this monday (June 2nd). I definitely share your feelings on the subject. I really, really did not want to have to do the surgery. Fortunately, I found a terrific doctor (after several not so terrific ones) who was supportive of my goals. He has always made it clear that surgery was an option, but not unless I wanted to do it. In the meantime, we tried everything, new drugs, research studies, increasing my dosage. Nothing worked for very long, and I always ended up back where I started. Something that was always stressed to me by my doctor was that I deserved to have a decent quality of life. I think that most of us with Ulcerative Colitis get used to suffering through problems. It becomes part of our daily lives, and we forget what it is like to not have to deal with it. We are a tough bunch. I know that it was an important realization for me when I noticed that I really didn't remember what it was like to feel "good." When someone asks how I am, the best that I can do is, "Well, the toilet wasn't filled with blood today." I think that we all deserve better than that.

Needless to say, the surgery never seemed like it would be a step in the right direction for me. I thought that I had found the holy grail earlier this year when I started on Remicaid. I had heard that it stopped working after several years usually, but that would be something. Unfortunately, it worked for about 2 weeks for me. That left us with few options. There was little we could do to lower my already lowered immune system, and even if we did try and it was successful, the long-term effects would probably be not very good. At that point I decided to go with the surgery. Even at this point I was not 100%. I researched and researched and researched. I solicited info from people online, looked into medical journals, and interviewed people personally. I was not going to do anything until I was comfortable with it. The result of my research was that there are no guarantees in life (big surprise). However, the vast majority of people that I talked to said it was brutal and more often than not they had complications, but they would do it again in a heartbeat. I guess that kind of clinched it for me. I always looked at surgery as throwing in the towel, but it seems that most people that have the surgery are able to attack life like they couldn't before. I am looking forward to being able to do that. I was just joking with a friend today about whether the world is ready for me back at 100%. I feel more hopeful now than I have in a longtime, but then again, I am not recovering yet.

It is not going to be a walk in the park though. The ostomy is going to be rough, mentally and physically. I could be in the hospital for up to a month (according to some). It should be a week though. Once I switch to the J or S pouch (whichever they decide to do), it is supposed to be pretty rough for a while. It is worth it though from what I hear. So I guess to sum it up, nobody can make the decision for you and you are not alone in your hesitation. I can let you know how it goes for me if that helps, but everyone is different from what I hear. Good luck with your decision. Don't rush it if you can help it, but if you decide against it be sure it is for the right reasons.

-Rich

Thanks. I do find that it just helps to spend time on forums such as these. Nobody understands how life with UC is except for other people with it. It keeps me sane to spend time commiserating.

Perhaps if one of us gets the surgery they really would find a cure the next day. So who is going to do that good deed for all of us? If someone here has the surgery and the cure is found the next day, you will be the hero of all UCers forever because we will know that if you had not had the surgery, the cure would have taken longer! lol

Seriously, I have never considered surgery because I have stretches of time when I feel fine. I am always convinced that I can get back to that remission. It does seem now that I am stuck in a very stubborn flare but I am still holding out hope that if I can break this cycle and get back into remission, then I will be able to stay in remission for another while.

That's the big challenge psychologically, I think. Do we consider surgery for something that just might, one day, get better? For people who have never been in remission it's probably a lot clearer that the surgery is a good option. For someone like me who spends about half of each year in a flare and half feeling perfectly normal, it's really a difficult call. Too bad they can't just take out my colon when it's "broken" and put it back when it's ready to work again. :)

Beth, I'm sure that with all this good discussion you've had and all your clear thinking that you will make a good decision. The nice thing is that there's no deadline and no rush.

First off, mbx5 I am not picking on you it is just a statement you made is one I used to use a lot and have heard many use when discussing this horrible disease.

 

mbx5 said...
If I am faced with death, I will opt ot have my colon out.

How can a person hit that fine line without crossing over?  The reason I ask this is because I went many years not weighing in on the mortality of this disease.  It is true that death by UC is a hard stat to find but it is the complications of the medications and symptoms of the disease that get you.  Recently I was given the "luxury" of finding that line but not crossing it.  Put in ICU on a ventilator, 5 days sedated and given less then a 10% chance to live.  Sepsis was the official diagnosis, which is not uncommon with UC.  A little bit of research confirmed this and I was able to see how easy it was to wind up in this position again while just trying to "control" my UC.  My strained, bleeding colon was the perfect avenue for an infection to get into my blood stream, the colon is a perfect place for an infection to hide, steroids (not to mention other meds) are good at suppressing an immune system and there you have it, sepsis with all your vital systems shutting down.

The argument that one of my in-laws had with the surgery was that they couldn't put my colon back in once they took it out, my rebuttal was they can't dig me up once they bury me.  That may be a morbid way of looking at it but it is realistic.  The ER doc that attended me told me later that I had a 10% chance of walking out of the hospital.  One in ten, how many times can I be that lucky?  I figured pressing my luck once was enough.  I am not saying that all UC sufferers have the same possibilities of complications that I had, in fact, I am probably in a minority.  I can trace my symptoms back 15 years atleast, it wasn't until five years ago when the disease started interfering with my work and life that I went in and got diagnosed and just recently was when it brought my life to a complete halt.  No meds that I tried would do anything for it so trying other drugs that use the same technique, immune suppressing, seemed pointless to me.  If one didn't work why would I expect another similar one to?

After the scare, that could have been fatal, I decided no matter how much pain I might be in and no matter how demoralizing it may be to have to empty a bag of poo every few hours that it beat being dead.  My surgery was done laparoscopically but there is still an incredible amount of pain.  It is tolerable as long as you use the pain meds.  My research prior to the surgery is what I credit my ability to accept "Leo", my stoma, without being grossed out or even self conscious about.  I was release from the hospital yesterday, which was less then a complete three days after surgery.  Surgery ended at 5:45 p.m. on Tuesday I was released 4:00 p.m. on Friday.  I would say that a "recovery" like that would probably put me in the minority also.  The majority probably suffers more and longer then I have and I feel for them.

I am just pointing out that some people tend to overlook the seriousness of this disease which then makes the use of surgery seem less needed.  There are many different treatments and each sufferer seems to have to find the proper balance between health, lifestyle and comfort level for themselves.  I seem to have found a direction that I am comfortable with or at least a path I am willing to take.  The new "equipment" shouldn't mess with my personal life, (my wife wouldn't let me date before the surgery) LOL.  Many areas of your life need to be reviewed when weighing your options but none should be excluded.

My post surgery update is that less then 12 hours after surgery I felt, clean or health again.  I have no other words to describe it.  It seemed that my body was at rest finally and there was no "war" going on in my gut.  I still hurt from the surgery.  I don't move real quick just yet but I do have a new energy to start doing many of the things I had put off indefinately because of the disease.  Right now it is just thinking about doing thosthings, hopefully in a month or two I will actually start the physical porcess.   I will keep giving updates for anyone who wants to follow surgery progress and will try to be as brutally honest as possible.

John

I guess that those of us who have had surgery have the benefit of hindsight - we KNOW how much better life is after surgery (which is probably why we keep pushing it) and a lot of the time it can be hard for us to understand why some people are so against surgery esp when we see people who have strugggled for years to keep their colon while suffering because of it.

There is no way I would ever want to go back to those pre-surgery days of UC.

Sorry Beth, I can relate to mostly everything you said. I get so frustrated trying to be well while at the same time suffering the effects of these darn meds and still having trouble. I did have a couple good years on Remicade, and now after about 2 months on Humira, I am FINALLY getting closer to remission. I keep meaning to meet with a surgeon, but I haven't gotten up the nerve yet but it is something I think anyone with UC should do. I hope that you find something that works for you soon.

John - I admire your courage, as well as all others who have made or are facing the choice of surgery.  I see your point, and actually agree.  My hesitation toward surgery is probably more fear related than anything - i.e. I do not have the courage for the surgery and I am risking testing statitics at this point.  Thanks for that post however - it is a very good wakeup call.

Actually, I've read that you're probably more likely to have a successful pregnancy with a j-pouch than with ulcerative colitis. I guess it's because a UC flare increases the risk of miscarriage and whatnot... The only problem I've read with the j-pouch is that it MAY be more difficult to actually get pregnant for some people (but most have no problem), and that it's recommended to have a C-section after the surgery.

John and Rich - Thanks so much for your replies, yes I would love to hear your progress, please keep me updated. I am sorry that you have been through so much!

I feel like I am just buying time right now and I do really want a family and I think if I can do it w/out being on any drugs w/the j-pouch that might be the best thing. It might be better for me to have the surgery now before kids too, b/c if I did get the surgery later on I would have to deal w/having kids that need me and being out of commission for them.

Expecting and Edie - that is good news about pregnancy for the j-pouch, I would be interested in knowing how everything goes for your friend Expecting, I also think your friends are very courageous.

I know having an ostomy for a short time will be very hard on me physically and emotionally. I just can't deal with that for the long term, I bet that is probably a complication of the surgery, maybe being stuck w/it........

I think I need to get out and talk to people and start understanding it. I know I can't continue to be like this. Like I just mentioned in an earlier post, I am becoming angry and bitter and I am completely annyoning myself, I used to have so much fun, but now 1/2 the time I feel like I am 'faking it' and I am getting tired of that. I have lost the last 9 mos to this disease and I was in remission for 5 mos of it, but mentally scared that it would come back and bite me in the ass (I crack myself up = ).

Anyhow, thanks everyone, I feel better just not feeling like the only one (though I wish I was).

I see my GI in Oct or earlier if my flare does not get better and will start discussing w/him then. I will go to the Chron's and Colitis Center in Boston too.

xo
Beth

ediekristen, I've always wanted to be a wife and mother, too. But that forum was NOT comforting to me!! It seemed like a lot of women had fertility issues and had to do IVF or IUI. There were even a couple threads about women who had to give up trying to conceive since insurance wouldn't cover IVF! That freaks me out.

But I guess I shouldn't even start to worry until I talk to my GI, who's probably going to be against surgery anyway.

Hi Zast, thanks for the info, I read a little about laproscopic surgery, it does sound good. One of the things I am wondering is, how much time will I need to take off from work after each surgery? I could work from home if I needed to. I just don't know if it's weeks or months? I figure I would have to do the 2-Step and hopefully avoid pouchitis (one article I read suggested that if it's done in 1-step pouchitis is more likely) who knows though. I could do complete bed rest for a couple of weeks w/out a problem after each, I get 3 weeks vaca a year and have been carrying over 2 weeks a year and get 6 sick/personal days, so that is 6 weeks.