frustrating tough choices

Hi people! I just need to vent- have been slowly going downhill since my last scope, not sure if it's due to the scope itself & the somewhat toxic prep, or the fact that I quit my probiotics shortly after my scope results. Based on the pics, they weren't doing much of anything. Once I'm done with my turmeric caps I will not be buying any more of those either. So it's just been Asacol, Humira, & Imuran. I even quit on the steroid enemas- had been doing them faithfully prior to the scope, hoping they'd help, but no go. So screw them! I'm looking into surgery & have an appt. with the surgeon in November. Since I've been doing a lot of research on quality of life with a perm ileo, my biggest concerns are problems with the ileo itself. Here's how it is- I can go on the way I'm going, I've made allowances in my life to deal with accidents, would be willing to get a scope yearly for cancer surveillance, etc Or I could get surgery, & possibly deal with the problems that could cause- prolapsed stoma, blockages, dehydration, etc. Seems like the problems caused by an ileo require further medical intervention, as opposed to the problems caused by UC- which I've found ways to deal with on my own. They're not great, no one likes pooping in their pants, but.... And then, if I choose not to pursue surgery at this time, I could wind up with colon cancer down the road. And what if they miss it? I don't want to die in my 50's from colon cancer. I'm just ANNOYED & depressed & undecided. I see my GI next week, & plan to talk with him at length, as well as grill the surgeon as to how many people actually do require more surgery, have problems, etc. Then I'll make up my mind. But this limbo stinks, & meanwhile, things are not going well. Currently, my saving grace is that the ileo problems are all "possibles", not like my UC problems, which are reality. Just talking, even though I talk with my husband, he really has no clue what it's like. How does one make a decision? My boss, an MD, told me to make a list of the pros & cons & see which one outweighs the other. The surgery pros do outweigh the cons. But......

Even though I'm not considering surgery I've had your thoughts and wonder WHY there isn't some entity that keeps track of UC/surgery statistics and results. For example: how many people need additional unplanned surgery. What is the quality of life after the various colon surgeries, what is the typical infection rate, or death rate. Lots of information that could be used to make an informed decision.

I don't like anecdotal information from a surgeon, I like national clearinghouse statistics, then compare those statistics to the surgeon's (are their outcomes above or below average).

I am very skeptical of the medical community as far as giving unbiased information because of previous experience and previous poor treatment that included nothing of the Hippocratic Oath of "Do no harm".

Unfortunately the decision is up to each and every person without all the information that could be available. The best thing you can do is get the very best surgeon possible once you make the decision to do it IMO.

Good luck.

I was faced with the decision to have surgery way before I actually went through with it. The only thing I can say is you just kind of know when it's time and you have had enough. If you are not ready yet, give yourself some time. I had to hit bottom so to speak before I made that appt. with my surgeon. All I can say is I am soooooo happy that I went thru with it. I can't believe the difference in my life now. I opted for the J pouch mainly because my sister and my uncle have them and I saw how well they have done all the years they have had theirs. It's a tough decision all around and I am sorry you are faced with it. Best wishes to you....

I can't help but consider colon cancer- that would be a huge factor in my decision, ultimately. I recently read an obit on some woman who just died of it, late 50's... I have a young daughter, I want to see her grow up. I know, the whole "hit by a car" argument, & it is valid. But I feel that barring any accidental death, if I keep the colon in, cancer is not a wild shot in the dark. There actually are quite a lot of stats re. surgery & complications with a perm ileo- if you google "quality of life with a Brooke ileostomy" you get a lot to wade thru. So it is hard data, not just anecdotal evidence. And as it is, I carry around a bag of supplies everywhere- change of underwear, baby wipes, plastic bags...  I don't think I can face more than 1 major surgery, or the inevitable butt burn, numerous bathroom trips, etc. that come after a take-down. Sue, you are correct- I simply cannot defend my current standard of living, I can rationalize it, & I do that plenty! But defend it? No way. I just vacilate so much, some days I feel like I'm ok, even having accidents, then other days I cannot wait to get rid of it. I suppose I can't be afraid of "possible" complications, they are just that, "possible". The only thing I haven't tried is cyclosporine, & after looking into it, it's mainly used in acute severe flares- which doesn't describe me, I'm more of the long-standing, lower grade inflammation type. It has a lot of nasty side effects also, "possible" complications... like death! I know my GI puts you in the hospital to get the drug. At this point, I feel like enough is enough, the drugs get more & more harmful & seem to do less & less! I know what the right thing to do is, I'm just getting into the whole grieving part of it- I don't want this stupid surgery, I want my body intact & whole. It's totally freaking me out.   Thanks for being there.

Eva, I think your answer is in the word "possibly."  You pretty much know that your UC isn't going to get better.  I honestly think you've tried everything there is to try, so unless you get surgery, you've got many, many years of living like you are now, plus an increased risk of developing colon cancer as time goes on.  And honestly, I wonder if it's as "easy" to spot early signs of cancer in a colon that's a hot mess, you know? 

Sure, there are possible complications from surgery.  But they're just possibilities.  And they are generally corrected fairly easily, right? 

Do you think it would help you to make a list of the pros and cons to living like you are now, and having surgery?  Also, give each item on the list a weight, from -5 for the very bad cons to +5 for the very good pros.  A friend of mine was recently struggling to make a decision about whether or not to leave her current job and take a new one (she had already been offered it), because there were some negative things about it, but there were also many negative things about staying at her current job.  So she made the list, and found that the outcome was that she'd be an idiot to not take the new job. 

When i was trying to decide it was so hard, in the end it came down to  i KNOW i hate my life with UC i KNOW i'm miserable, i MIGHT hate my life with an ileo, and i MIGHT be miserable, but i WON'T have UC!  and i had read so many posts from people with ileos and none of them were miserable or hating life, they were all happy and healthy!
then i made a pro and con list, i had about 3 pages of pros, and i only had 3 things on my con list.  Just 3 cons versus 100 pros!
dehydration is common at first but is easy to prevent, and if it does require medical attention, its just a quick saline IV.
blockages can happen, but like Suebear said, they can be prevented by good chewing and watching what foods give you trouble.  and most of them can be handled at home too.
I'm not sure about prolapsed stoma, i honestly don't even know what that is, so i guess i havent had it, lol.
I can't promise that you will get an ileo and have no problems whatsoever.  i can tell you that i have one, and i do everything i want to, when i want to, i eat everything i want to, when i want to.  I do carry about a bag with supplies, it's in my purse, pretty small.  and i take a bag with a change of clothes, however i would take that anyway because my kid randomly throws up so we always have clothes, lol.  It can be annoying to take that stuff, but without this ileo i wouldnt be going anywhere i would be too sick.  its a small tradeoff for an actual life!
And just in case you are worried, noone will see it, you can wear whatever you want (if you want to see some pics i can email you some of me and you can try to point it out, lol) and it won't smell :D

good luck!

Eva, most people who have had their colons removed wished they had done it years ago. I've yet to read a post from someone who wished they had their diseased colon back. I know you've been considering surgery for a long time and I want to encourage you to finally pull the trigger. You deserve better. I can't tell you how much better my life is now. I've had two minor blockages and by minor I mean they last a few hours and they remedy themselves. Just drank some grape juice and laid on my side. It was uncomfortable but I was never in so much pain that I had to go to the hospital. When I had UC for five years I did have a few accidents and they were absolutely demoralizing and mine were all at home. I can't imagine living with that today. My life no longer revolves around my colon. I went the j-pouch route but I know many people are happy with their ileos. It's been almost 10 months since my last surgery and I feel like my body has adapted to everything now and life is good. Can you get your consultation moved up? You might call and ask to be put on a list if there are any cancellations. Talking with a surgeon about your concerns will be helpful. Make sure you have a good one. Good luck.

food for thought on surgery:
www.internalmedicinenews.com/speciality-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

"The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology.

Indeed, colectomy wasn't the end of the story for the majority of ulcerative colitis patients who underwent the procedure in Olmsted County, Minn., during 1940-2001. The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn.

"

In addition to colon cancer, another thing you should consider is the increased risk of lymphoma and other cancers from taking Humira. If you don't have surgery you're looking at continuing on lots of drugs, some with unknown long-term side effects. For me, that would be reason enough to have the surgery. My best to you, I'm sure it's a difficult decision.

Thank you, everyone- all the replies really DO make me feel better! Meredith, what made you decide to try Cimzia? We are in a similar place, being mothers & having a chronic illness is so tough. More so on the kids. I've gone back & forth so many times recently, I feel like trying to forget about it as much as I can, until I see both doctors- my GI next week, the surgeon next month. I've been in a real "throw caution to the wind" mindset, eating whatever, whenever... (just finished 2 chocolate pnut butter chip cookies), using my port-a-potty wherever... I just don't care anymore. I'm either going to go on dealing with it or not, simple as that. Surprisingly (or maybe not so surprising..) is the fact that I feel totally alone right now- don't want to be around my husband, even my daughter is trying my patience, & she's a good kid! Whatever supports people have, ultimately you're all alone- whatever happens is going to happen because I decided on it. No one else. Yeah, I guess I am a little depressed these days, but it'll pass when I have a concrete plan. It's solely due to this one occurence, not worth an anti-depressant. Am sick of meds anyway.

My son was almost 2 when I had surgery and that was a big thing for me too. I couldn't take him to the store, he was playing in the bathroom, I was just not a good mom. And I wanted to b able to go to tball games, and sit in carline and take him to the store.

I'll know more after I meet with the surgeon, but I have an RV fistula- have been told in the past that generally, a fistula signifies Crohns to a surgeon, & the j-pouch is not a viable opiton for Crohns. Even though my diagnosis is UC- the surgeons work with what they see. Other reasons, I really can't face more than 1 major surgery, the bowel habits after takedown resemble UC far too much for my liking, & on jpouch.org, there are a LOT of posters who are having/have had so much trouble with their pouches that they've opted to go back to a perm ileo. People on biologics for pouchitis, taking Immodium daily, etc. Granted, there are plenty who have nothing but good from their jpouch. I have no problem, aesthetically, with a bag, nor do I care "how" I empty my bowels, so for me, a perm ileo seems like the way to go. I also know that if I were to get a jpouch, then have trouble resulting in numerous bathroom trips, butt burn, accidents, more surgeries, etc. it would really do a number on me, mentally- I'm in a rough enough state as is! Ha! Gotta still laugh though...

You have to remember Eva, the folks posting on jpouch.org are the people having trouble because it's a support forum just as this one is. The vast majority of j pouchers are out enjoying their life. Just as many UCers are not posting on support forums if their UC is being controlled. There are always going to be people that will not have a good result with the J pouch but it definately in the minority. I went with the odds and I'm thankful I did.