Is it time to give up...

Sounds to me like you should seek out a couple more opinions. Find the best doctors and get their opinions. I wouldn't want to find out or even have a sense later that I had my colon removed because I didn't seek out the very best doctors (and I'm not saying you haven't already, but sounds like you are not totally convinced you need surgery yet - and you should be when you make that decision, imo.)

This is sure is the forum where people will sympathize with your plight... 

I wouldn't let some dr. you don't have a long relationship with tell you to remove your colon if you feel you have been doing ok all this time with your problems.  I've crapped my pants a few times myself.  Sucks, I know.  I tore up a nice hiking trail near Moab a few weeks back because I had a terrible crap attack.  Don't worry I buried the evidence - about 10xs.   But I also have a friend with Crohns who opted to have surgery to remove her colon and she's still in the ER all the time with issues.  It may or may not help your situation.  I would for sure get a 2nd opinion, try all other options - at least think about it for a while if you can before having it removed.  BTW have you tried any of the reduced gluten/sugar diets?  All of the available meds?   I've been on the SCD (diet) for about a month now and my symptoms seem to have improved along with taking Uceris.   Tried Fecal Transplant?   You would hate to remove and then later find out it could have been resolved with diet or FT.

If possible would you to keep us updated on what happens in your situation? My Dr. has mentioned this too a few times. Good luck. 

You are going to get lots of different opinions on your situation. And there are current discussions going on here about surgery....you have probably read them. I am only going to say this: I am SO happy I had surgery and got on with my life. I have a j pouch and life UC free and drug free has been good again. To this day I don't take it for granted and I am still in awe that I am healthy again.

It's a HUGE step. I suggest since you are not responding to the meds, (and being on Prednisone for 6 months is bad) that you go for a surgery consult and get the run down of what to expect. It doesn't mean you have to commit to anything. It's always good to be prepared and have a plan.

Take a good hard look at your quality of life. If you aren't ready then you aren't ready. I'm a believer that you have to be totally ready for this because it's a tough process to go thru. I couldn't get to the OR fast enough at the end....I was totally ready for it.

Have you tried Remicade?

All the best to you.

Everyone seems to be different but I think you owe it to yourself to at least try the fecal transplant procedure. I've been posting about it like crazy the last couple days since my follow up colonoscopy and promising results. You have nothing to lose in trying it.

I don't understand why people think that the treatments that aren't advocated by doctors are risk free... you can get an infection or worsen your flare symptoms by trying fecal transplant. There are many here who reported that their flareup got worse after FMT and it never helped. That's not to say that FMT doesn't work for some people, but to advocate for it and say "you have nothing to lose" is false. Every treatment has both risks and potential benefits.

It sounds like you need to see better doctors. It's unacceptable for you to be *guessing* about whether your colonoscopy showed polyps, if they were biopsied, removed, whatever. You need a GI who is an IBD expert and who will communicate clearly with you. Until you get that, there's no way of knowing what the correct treatment path is for you, whether it's medical or surgical.

My title may have been misleading, I didn't mean "give up" as in "give up" I meant specifically what I said "give up on having a colon".

As far as far fecal transplant - yes this had been mentioned in the past but not recently by any doctor I've seen that it could be a viable treatment for my severe case.

And to whoever asked about Remicade, yes I was on that last year and I seemed to be responding, however, the problem was with Remicade is that I unforuntately for almost ALL of last year had a c.diff infection ON TOP OF my colitis, and this caused my infinite problems with treating the colitis, including the doctors recommendation to STOP the remicade until the c.diff was under control. However by the time the c.diff was under control, around March of this year (had it for over a whole year repeated cases of it, due to that + my colitis I was in the hospital a over a dozen times last year), they told me I 'may' have built up anti-bodies to the mouse protein in Remicade, and that it would no longer be an option for treatment.

At that time I was told to switch to Humira and that it was basically the same thing, easier to use since I could do it from home, yada yada yada. So I was hopeful about the Humira. I had read cases of people taking up to 4 months to respond to the Humira, but I was not responding and apparently still am not after being on it for 5+ months now.

And about the prednisone, I have been on 20 mg solid since December, and this is NOT my only bout with Prednisone, prior to that the year before I had been on and off it for months at a time up to 40 mg at one point. I gained over 50 pounds and ended up near 300 lbs, then most recently (by that I mean this year) went the other direction and dipped far under 200 lbs. Basically due to prednisone my weight has fluccuated between 170 and 285 lbs. Right now I seem to be around a healthy-ish 200 lbs (which is 30 or so below what my NORM was for many years prior to my disease). My goal is to stay around or under 200... but that is the least of concerns at this point obviously.

I did not have any plans to dive right into surgery. I just don't know at what point you try all these different things and finally just admit defeat as far as your colon being attacked. The pictures of it look really BAD. Just looks like the inside of a bloody tube of sausage basically, not to be too disgusting but that is just how awful it looks.

Also I am on narcotic pain killers, 15 mg of Oxycodone every 3.5 hours as needed for pain, which seems to be pretty much around the clock. I don't mind having to take that to keep the pain under control but there is always a worry of long term narcotic use as well, which I do not want to think about having to take for the rest of my life either.

The funny part about all of this is going back to my original GI doc saying that if I hadn't quit smoking, this disease may not have prevented itself until I did. I quit because of a new girlfriend I had who would absolutely not tolerate a smoker, and about 6 mos after quitting smoking the disease seemed to start presenting itself, and it seemed about a year after that is when I was officially disagnosed.

I read a study which can be found here (hope it doesn't break forum rules listing this, since it's not an 'illegal substance' more just a controversial one, I don't see why it should? but if it does just feel free to edit/remove this whole paragraph mods):

http://www.icdrc.org/documents/nicotine%20and%20ibd%20uc.pdf

This study talks about the nicotine and it was quite an in-depth study for a lengthy period of time with placebos used and all that and it seems that 40% of those with the non-placebo nicotine showed a significant improvement. So this was something else I was considering trying as a last ditch effort. Also this was for only a 30 day trial, so that is all I would try it for. I would NOT go back to smoking cigarettes, it would either be the patch or the gum. (most likely the gum since the patch is like 3x the cost). I figured before surgery it was worth the risk of becoming nicotine addicted once again, especially considering the fact that I quit smoking cold-turkey almost 4 years ago now (12/31/10 at 11:55 PM was my last cigarette...) to see if it would make any difference in my case.

So yes I do still have some things I can try. Also, as a result of being in and out of the hospital so much last year (I have not been in the hospital but once this year, thankfully) but I lost the job I had acquired after being there only a few weeks because I was hospitalized TWICE during that time.

Anyway, I was recently approved for disability which is not only surprising but quite miraculous, it's not a fortune but at least it's enough to pay my bills and keep gas in my gas tank without looking to friends and family for handouts on a regular basis ... that is a HUGE relief and weight off my shoulders.

I just wonder if I do get the surgery if my benefits will be discontinued since I'll be considered 'cured'? That wouldn't be so good either as it would take a lot of time for this surgery and recovery time and etc before I could even start a job search again... and not that I would want to stay sick by choice ONLY because I receiving a 'hand out' and am content being miserable but being a paid a miniscule amount to doso, that's not what I mean at all. Kind of hard to explain. When you worked for years (albeit part time) and built up some savings that you thought you'd always have when/if needed for things you need (car repairs, emergency whatever, buying new things) and then you end up having to spend all of that PLUS go into debt with your friends just to keep your car insurance and phone bill paid monthly.... that's when the depression and guilt also begins to become a big factor. But like I said that is thankfully all over with now, and would just to have that cut off right after getting it and not even have a moment to think and breath and get my feed back on the ground and my head above back above water.

So yeah, there is and has been a lot of things for me to think about.

I will definitely mention the fecal transplant and again push and find out about the Uceris. Speaking of which on the Uceris, I have still not been able to find ANY reason why this drug cannot be taken continuously ?? I have yet to take it yet, but I cannot find any reason why it is only given in 2 month treatments at a time. I know people have had repeat treatments of it, but I don't understand why you can't take it just as needed forever? What side affect is there of this drug that is bad? I know it's a steroid, but again this steroid targets the colon specifically instead of affecting all your other systems which is WAY better than prednisone so I just don't get it. Anyone happen to know?

Thanks

No steroid can be used forever, even something as "mild" as a skin cream. Even though Uceris doesn't release until the colon (in theory), it still has negative side effects and a small amount of systemic absorption.

To me it sounds like you are ready for surgery, even based on the steroid side effects you've experienced alone. If you're not responding to biologics and you're not responding to mesalamines and steroids aren't even putting you in something close to a remission, I think every day you spend NOT having surgery is just another coin in the piggy bank that is "lifelong steroid side effects" -- osteoporosis, avascular necrosis, glaucoma, hypertension, and type 2 diabetes to name a few. Here's another one: 2.5 years of constant inflammation in your colon is a pretty good recipe for pre-cancerous changes. I think you could keep your colon for a while, but not forever.

It's time to have a consultation with a surgeon. It's ALWAYS better to have a consult before you know you need surgery, because shopping around for a surgeon you like and trust is stressful. Don't wait until you need surgery NOW to form a relationship with a surgeon. It's also just another great way to get an authentic opinion on your state of health from an expert. Surgeons will tend to be more pro-surgery than GIs but when I was shopping for a surgeon one said to do it and one told me to wait, so it's not unheard of for a surgeon to not be gung ho pro surgery.

"scroll up: "You have nothing to lose in trying it.""

oh, that ,,,,,,,,,,,,hmmmmm !

All depends on your personal quality of life and what you're willing to tolerate.

And......you don't have to go to the ends of the earth to the farthest corner with your ass backed in to finally say "OK, take it out".

I would suggest, however. that you start doing the homework and making appointments regarding surgery to know exactly what your options are. Doesn't mean you have to do it...but you should know enough to make a decision.

Try not to keep raising the bar on tolerance and lowering it on expectations.
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barelyholdingon You mentioned being in the hospital a dozen times and being told by every dr that it was time for surgery. I think that's quite a few second opinions. Now, those aren't all GI's or surgeons I'm sure but it's still saying something if that many doctors have said the same thing.
As for having it removed, I always hear people say giving up the fight, stop thinking like that. That's just not true.
You said something about having the bag and you were only 28, i was 29 when i CHOSE a bag. It's not a death sentence. You don't have to chose that, and jpouches are great for most people, it just wasn't for me. But don't let the fear of maybe having a bag deter you from surgery IF you feel you are ready. I hear a lot of people talking about how gross and humilitaing a bag is, and how unhuman it is (not you, just in general) and I think, but pooping your pants is better?
If you are to the point where you can't hold a job, taking pain killers and prednisone it's time for a consult at least. You do not want emergency surgery. People who have emergency surgery have a higher chance for complications. You won't get to choose the surgeon and you might get someone who isn't as skilled, you won't get a good stoma placement and that makes things very hard.
Just talking to a surgeon won't hurt anything.
good luck!

I have been there. I lost my colon at 16, because I stop responding to medicine and lost too much blood too quickly. It was very sudden and it was an emergency operation that I had no choice in the matter of doing. You need to do what your body is telling you. If you think it really is not responding to medicine it might be time. If your willing to keep trying others to avoid medicine then try. Just do not decide to late and lose it like me. I have chronic pouchitis now at 18. It still feels like I have UC at times, but in ways it is worst from the foods I can not eat to the noises and gases my body produces. If anything UC causes a lot of problems, just choose the path you can live with and be happy with before its too late!

woofwoof said...
Don't even think about removing your colon There's millions of alternatives you haven't even tried yet. I'm not surprised you're having no luck with the regular regime doctors put you through. They were all failures in my case too. I only wish I knew about alternatives such as fecal transplants and probiotics when I had my UC.

when you had? Did u do fecal transplant?!