Hello, all. First post here.

I'll start with a little history - currently 36, diagnosed with probable UC in 2003 after a couple of years of intermittent symptoms. Since then have had relapsing/remitting course of disease characterized by remissions of up to a year interspersed with 3-4 month flareups. Most recent episode began about 6 months ago and has been most severe by far and totally refractory to treatment (colazal, canasa, prednisone, remicade; unable to tolerate azathioprine due to nausea).

Recently returned from second opinion consult at Mayo Clinic in Rochester (nice place!), where they confirmed UC diagnosis (left-sided to 40 cm, previously had been only proctosigmoiditis) but also tested positive for C. difficile. No response to Flagyl and just started a 2-week course of vancomycin today. I don't really expect much here but understand that it's necessary to try.

My GI signs are what I'd call moderate-to-severe - at least 6 but up to 12 or more BM per day, lots of urgency, variable amounts of blood and mucus, and intermittent bouts of cramping abdominal pain that can get quite severe. I generally feel OK otherwise, but I feel like I'm really starting to be worn down by all of this and am becoming less tolerant of the ongoing problems. Due to the nature of my job, it's really not possible for me to work like this, so I've basically been out of work for the entirety of this year so far (tried to go back in March but it just didn't work out).

I've seen a surgeon to discuss the j-pouch and I realize that this is likely where this is heading. That being said, there are a couple of further medical options I feel I should pursue first (most notably entering the clinical trial for abatacept), as the odds on the j-pouch scare me a little. Sure, most people are satisfied with outcome, but a sizable-enough-to-make-me-concerned percentage go on to have significant complications. Not to mention that the "ideal" outcome of the surgery is a far cry from having a normal GI tract.

So here's what I'm wondering. How long were you ill before deciding to have the surgery? What was the inciting factor that made you pull the trigger? Based on what I've told you here, do you think I'm foolish for dragging things out further at this point?

Yikes this got a bit longer than I intended. Thanks in advance all for your input.

Hello Insecto,
I have to say everyone has their own feelings so these are just mine. First of all, there are more people with success stories than not success, but the stories on this website are going to be the worst, because it is a support group and most people who are doing well do not come here for support. They are out living their happy lives. With that said my daughter had UC from July, 2004 until she had her colon removed in Feb. 2006. I am so glad she did not have it longer. I know it's a tough decision, but when I read about people suffering for years and years I just don't get it. True, My daughter had surgical complications, because the surgeon didn't scope her first and did what should have been a 3 stage in 2, but none the less we wouldn't go back to UC. She has taken no meds since Feb. 2006 and is totally healthy. She eats what she wants, does what she wants and feels great. She is disease free and feels it. The longer a person has UC the higher the risk of colon cancer, and don't forget those drugs you are taking. Liver disease, lymphona kidney failure, just to name a few. I used to ask my daughers doctor, at what expense are we saving her colon? Oh, I also forgot, she had steroid toxicity from the prednisone (now there's one great drug!!!!)
She is colonless and am is so happy without it. She's off to college in the fall, happy, healthy, disease free and drug free!!!! So, that's my opinion and experience, your colon isn't going to get any better you'll be so happy without it!

I suffered with UC about 21 years. I exhausted all drugs including Remicade which was not approved for UC when I started it. I had a serious steriod overdose, and that was when I knew it was time. I was out of options. When I keep pouchitis in check, things are way better, not perfect, this was not a cure, but way better. Good luck with your decision.

I only suffered with UC from Mid March 07 to Mid July 07. I tried the usuals for drugs but hated the way they made me feel. I made the decision to have surgery before I exhausted all drug options because I figured they would only do so much for me and I wanted to work and play.

It is amazing how quickly your life can come back to you immediately after you have a colectomy and I had complications almost immediately, infections, partial obstruction...

But I was able to go back to work, excercise, ski, fish but most importantly not have to deal with symptoms anymore or run to the bathroom.

If you are concerned about the overall success of a Jpouch(I was told about 90 percent). there is always the option to have a permanent end ileostomy. Life was one million times better with that than UC.

It is a HUGE decision but the only way your going to find out is to do it and it seems to be a common theme here from everyone that posts, It will be the best decision you have ever made!

Good luck!

I had UC for 12 years, the first 10 years were in remission and I was never seen by a GI but was treated with sulfasalazine. In the tenth year I succumbed to the flare of all flares and cycled through prednisone and 6mp, along with all the other usual drug suspects. I was deemed prednisone dependent and began fearing the side effects of that drug over surgery. I came to conclusion that I would never gain remission and opted for surgery in 2001.

I think it's hard to make this decision if your quality of life isn't really that bad. I didn't think my quality of life was bad but it was and it was taken from me so slowly that I rationalized it. The last 2 months of life with my colon were spent going to work and coming home. I couldn't make or keep committments to socialize or travel.

I have never regretted my decision to have surgery. Yes, life with a jpouch is not like life with a healthy colon but I knew I could never have life with a healthy colon again. I eat what I want, I take no meds, I am able to keep commitments and I can hike and backpack to my heart's content. I am more than satisfied with my plumbing.

Sue

Sue, I agree with you about rationalizing quality-of-life issues; it's easy to do. Like I said I really don't "feel" that bad much of the time, but I've only left my apartment for anything other than necessities a handful of times in the past several months. Maybe I need to be more realistic about that. It's just very tempting to dream that another prolonged remission is just around the corner.

I was interested in something else that you mentioned, namely that you are able to hike and backpack. Outdoor activities are important to me, and one of the things I've feared losing completely with surgery. It sounds like even with a good outcome from surgery, 6+ BM per day is not unusual. How do you manage to be outdoors (and away from facilities) for hours at a time? Feel free to divulge as much or as little detail as you like here.

This is actually something I've wondered a fair amount about the surgery. People claim that there's no more urgency, and that it's possible to hold it for longer, yet at the same time they report 6 BM per day. If it's possible to hold it for longer, why go that often? I'm sure to a large degree this is something that just needs to be experienced to understand, but I still don't really get it.

Thanks for all the input, everyone.

Hello insecto,
I was diagnosed with UC in January of 2005 and had my surgery ion July of 2005. I had exhausted nearly every drug on the market and none of them helped me (except for prednizone; that worked for a couple months). I was in the hospital for two months, constantly having tests and surviving on TPN and IVs. I'm so glad that I do have the J pouch now, and that I was a great candidate for the surgery (I was 18 when my colon was removed, 19 when I had my takedown). As great as this choice was for me, I sometimes wish that I could go back and tell myself to watch my diet, go see a naturalpath, etc. Yeah, I know, some people may think it's crazy but the natural pathic goal is to get to the root of the problem and solve everything from there. I sometimes wish that I had completely removed sugar and other things from my diet, but by the time I heard of the naturalpathic remedies, my colon was completely destroyed and had no hope of returning to normal. It sounds like your symptoms (as troublesome, annoying and painful as they may be) are not horrible yet and a diet may work for you... what could it hurt, right?

I've been reading a book called the Maker's Diet by Jordan Rueben. He had Crohns and slew of other horrible diseases, but because he changed his diet and lifestyle, he lives a completely healthy life.

I know that it sounds a bit cheesy, but whether you are into the Bible or not, this book tells you what people used to eat long ago. It tells you to rid your body of all of the preservatives, sugar etc. that makes up a huge chunk of our diets. I posted a link to his website and I hope that it will help you out.

I wouldn't say that I regret the J pouch. I've never had any trouble with it, no pouchitis etc. (I have had my pouch for 2 years now.) I just wish that I was more informed and that the doctors would work together with those believing in alternative medicine. I can understand why many people think it is sketchy, but I have had relatives cured of cancer simply by changing their diets (non-hogkins lymphoma and prostate). I wish you all the best in your decision!

http://www.gardenoflife.com/OurCompany/MeettheGOLTeam/J...gn=JordanRubinDotCom

Insecto,

I know I'm not up to this point yet, but how many times a day do you pee. I'm sure at least 3, but probably more like 5. Just think of it as when ever you pee you'll poop also. No big deal.

My surgery was scheduled while in my first (and I later learned from the pathology report, rapidly developing and advancing) flare of u/c. Both of my parents had colon cancer. My surgeon said it was a matter of when, not if, for the inevitable. For me it was a no-brainer. So after admittance on May 2, my surgery was on May 12. I had been having symptoms since March. It happened fast for me.

All I can say is: pull the trigger before you have to. Don't wait until UC has a gun to your head (gut) and makes you do it.

Too many of us were forced into emergency situations where we had the procedure done when we were very unhealthy. The recovery is so much harder, and complications are much more common - so don't wait too long.

That said, please make sure you have a REAL clear picture of what kind of trade-off you will be making. My UC was much like yours sounds. And when I got my pouch (after takedown), I was severely disillusioned for months. So many people say life with the j-pouch is so much better than life with UC, but when your UC is pretty well managed by meds (though it's sounding like yours is pretty symptomatic at this time), there is a tendency to think life with the j-pouch isn't so much better. It is, but it's a perspective thing.

I think if I had been told what life post-takedown would probably be like for months, I would have mentally adjusted better. Once you understand what it could be like for a time, and that it will get better, and accept all of this - then you need to schedule your surgery.

Steve

I had relatively mild disease, but then it became progressively worse over the course of a year - I kept adding medications but remained quite symptomatic. I was on 6MP and high dose prednisone (and even tried a dose of Remicade) without control of symptoms, so after about a year of this I decided to go for surgery. My only regret is that I did not do it sooner. I'm off all meds and have my life back again. Yes, I go the bathroom more often than 'normal', but with good control and I can now do what I want or need to do without UC running my life. Clearly the more symtoms you have going into surgery, the happier you will be with a good surgical result. Fortunately I am one of those people (so far!). Hope this helps,
Jeff

The more I think about this, and the more input that I get (from this board and elsewhere), the more I lean toward getting the surgery sooner rather than later. One thing I'm pretty sure of though is that if I do wind up having significant complications following the surgery, I'm going to want to feel like I really gave medical management the best shot that I could. As such, I think (for now, at least) that I will plug away with the meds a bit longer. Dealing with this for an extra couple of months is probably worth the peace of mind it could provide down the road.

quote:

please make sure you have a REAL clear picture of what kind of trade-off you will be making.

I really do feel like I know what I'm getting into, particularly with regard to the first few months following takedown. On average, it would be a significant improvement over what I'm dealing with now. Thanks.

I think you're making the most correct decision for you. You'll know when to pull the trigger (or pull the guts). It IS better to have this surgery while you're in better health. But if you're not ready you'll just second-guess your decision.

Many people have done exactly what you're doing - giving everything a try. Hmmmm, let's see - meds vs. surgery..... No brainer for me - I'd keep trying the medications. (Except for prednisone from what I hear.)

I had UC for 3 months before I had emergency surgery. It took longer to recover. But my situation is not the norm of course.

You'll figure it all out and you're doing the very best thing you can right now - being proactive and getting all the information you can before you feel a need to make a final decision.

kathy

quote:

My GI signs are what I'd call moderate-to-severe - at least 6 but up to 12 or more BM per day, lots of urgency, variable amounts of blood and mucus, and intermittent bouts of cramping abdominal pain that can get quite severe. I generally feel OK otherwise, but I feel like I'm really starting to be worn down by all of this and am becoming less tolerant of the ongoing problems. Due to the nature of my job, it's really not possible for me to work like this, so I've basically been out of work for the entirety of this year so far (tried to go back in March but it just didn't work out).

I read your post and this part stood out for me.
When you do go out, do you always have to scope out where the nearest bathroom is? I knew where the bathroom was in almost every store in Indy...Do you try not to eat for a day before going to some outside activity? I did.
I had similiar symptoms to yours for 2 years. I kept working and just had a horrible time at work. The pain would be so bad that I would throw up sometimes as I was having the bloddy D. I would just brush my teeth, wash my face and go back to work. I lost 65 lbs. and was always run down. I was so anemic my iron levels were almost non-existent.
My doctor and my wife(who I trusted completely) both convinced me to do the surgery. My doctor told me that I was so sick for so long that I had no idea what feeling well feels like anymore.
I took a month off before surgery to rest up and get better. That helped a lot. I remember for the first couple of weeks after Step 1 my main goal for the day was to walk 2 times from the couch to the kitchen - 15 feet. At week 4 I was taking my first trip while not caring where the nearest bathroom was.
I am 6 months post TD. Life is not perfect but it is much better.
I tried the diet thing as well. I think my colon was too far gone at that point though.
hope this helps
the decision is up to you. hope it turns out well.
David

Hey, Dave. It sounds like you were a bit worse-off than I am now.

I can usually tell pretty quickly whether it's going to be a good day or a bad day. On a good day, I can be pretty confident about going out and running a couple of errands, as long as I'm not out too long. So I do tend to scope out the situation but with planning I rarely find myself running for the closest public restroom.

On bad days, it sometimes seems like any standing up and moving results in an immediate trip to the commode. On days like these, I simply don't leave my apartment unless it's an absolute necessity. At this point, I'd say it's about 50:50 between good and bad days, a ratio that has slowly been worsening.

As everyone here knows, it's just very difficult to reach that decision. On good days, I find myself thinking that things aren't so bad, but on bad days I feel like I just can't take anymore, and these feelings are growing stronger. Plus, even if I am able to achieve a remission again, it's not like it won't likely be back within a year and the idea of going through this all over again is painful. Sure, the outcome of the surgery isn't particularly ideal, but at least (barring complications), it should be a stable situation. Being med-free would be awfully nice too.