How much and how long do you suffer before electing surgery???

Hello I am new to this website but certainly not the suffering, I too can tell you where all the bathrooms are in every store I go to and I can at any time gauge w/ acurate percision which is closest before I head for my sprint!

For 5 yrs. I've been told that I had Crohn's, I switched GI's for a second opinion before I would talk about operating. My second GI swears it's Ulcerative Colitis. I asked both GI's to consult and see why the difference in opinion, not sure yet but the both recommend surgery. My first GI told me food didn't play a role in my disease so I ate pretty much as I pleased and paid the price. Finally I put myself on a restricted diet and felt much better, was able to get off the steroids. I'm somewhat back to where I was but blame myself cause my diet is SOOOOOO limited and I get so hungry I just eat (nothing bad really, a piece of bread and if I'm feeling really bold I'll have cookie).

I could probably continue the fight, maybe, and it wouldn't be so bad however 50% of the colon is inflammed probably most of the time. Oh and did I mention my dad's side has a history of colon cancer? My uncle, aunt, and cousin (in her 40's died of colon cancer) As always I'm worried about colon cancer and now on 40 mgs of prednisone I'm really worried about it (steroids makes me somewhat paranoid).

Has anyone been in this position or is it something like they say, when the time is right, you'll know it?????? I'm still waiting to know! 

hello Tammyuc

i was reading one of my GI reports from over 10 years ago and he said that i would probably need surgery, and now i have finally made the decision to have it. i have just finished 6 months on the abadacept trial for no benefit and it feels like another 6 months i have put off the surgery decision. 10 years ago i was very reluctant to have surgery but now it seems like my resolve has been worn away. I feel relieved to have made the decision and I am looking forward to resuming a normal life. I can't really say what the turning point was, but it might have been the almost constant pain i was under from cramps (painkillers helped) or constantly feeling tired due to aenemia or the need for toilet spotting.

i still have to find a surgeon and will probably end up going to Sydney. So surgery might still be 3-4 months away. 

i think it is important that you are happy with your decision but for me it took a long time to get there.

good luck with your quest.

If you feel your quality of life is compromised due to UC, then it's time for surgery.  I made that decision after realizing at 2 years in a flare I was never going to get better.

Sue

for me, when I have exhaused all other options. I had a horrible flare for a month and I do not know how ppl can do that for years.........we are all different, I guess.

Thanks for all the good advice, I appreciate it. I'm leaning more towards doing the surgery but for some reason still holding out.

I have a dumb question that I'm still tring to figure out... what is remission? I don't know that I've ever achieved it?? If your in remission does it mean you tolerate more foods??? When I did the remicade, I didn't notice any difference in the way I felt nor did I notice any less trips to the bathroom, however my GI did a colonoscopy and said that there was improvement in the bowels. I'm thinking maybe if I would of stayed away from certain foods at that time it would of gotten better? Also when I did the methotrexate I was still on steroids and when I did like my 12th injection I tried stopping the steroids but the next day I broke out in a fever (which happens when my bowel are really bad)

Is anyone on any type of steroids for maintenance? Both of my GI'S said it is not a long term solution however one of them was willing to keep me on it at 5 mg plus the mesalamine and it seemed to work for a while. The other says to many side effects from the steroids.

I meet with the surgeon on Thursday, My GI said he will not do the surgery just because he recommends it so I'm interested to see what his thoughts are.

Is there any subject here where we can grade our doctors? I'm doing my research and checking out my docs however it would be nice to hear others' experiences with theirs.

Tammy

Sue, what does the j-puch mean for you? I've been told that I will still have 5-8 trips to the bathroom in 24 hours but do you still have the sense of urgency? Have you had any problems with it? How was the surgery for  you and the recovery time?

Tammy

Remission for me is having no more than 4 BM's per day and having no blood. Remicade is able to heal your bowels. But if it's not getting rid of the symptoms, then Remicade is not fully working. Looks like a spoke too soon in my earlier post--as of last night, Remicade is not working and I've already scheduled surgery.

I'm not sure if diet is your issue. For some, certain foods can aggravate symtoms; and for others, like me, food/diet is not a factor.

Steriods are bad! They're only for short-term use.

There are websites that rate doctors, but you usually have to pay a fee to access it. If I recall correctly, on the Ostomies board, you said you were going to the Cleveland Clinic. Cleveland Clinic has a pretty good reputation for digestive diseases and colorectal surgery, so you should be in good hands.

jpouch.org is a good site to get information. However, you might read some not-so-great stories, but the thing to remember is a minority of people face problems w/ their jpouches (3-7%) and they're the ones who need to post on a support site. Recently, there's been a good thread called something like "Calling all Good Stories" on the General Discussion forum, so you might want to check that out. Also, Sue answered some questions here on a thread called "jpouch recovery time." You may also want to see ucstory.wordpress.com, in which Mark documents his surgery.

Let us know how your consult goes on Thursday.

For me,  remission meant feeling and eliminating like a "non-UC" person.  I was in what I considered total remission after starting remicade in Nov,  until I began a flare in July.    I felt GREAT,  had normal BMs with no blood,  no mucous,  no diarrhea,  and no urgency or pain.   The only issues I had were right at my monthly menstrual period,  but so do alot of  non UC people.   I hope to be feeling that way again soon!   I'm nearly there now,  just tapering off the EVIL drug pred. 

there was a thing on the internet a while back about the top rated hosptials for diff things, and cleveland clinic was rated number 2 for GI stuff. I can't remember who was number 1. They way they did it was rate the hospitals by things. Like one was top five for heart surgery, one was top five for childrens stuff etc...

Gastro rankings: http://www.usnews.com/directories/hospitals/index_html/specialty+IHQGAST/

Y2K Bug, It seemes like you've tried at least most of the drugs--Humira and Abadacept are still in trials in the US. I think the most important question to ask is how many jpouch surgeries has the surgeon done---is s/he experienced? You should also ask if they perform surgery laparascopically or traditionally, and how many steps your surgery will be.

Ok, one BIG question. My son doesn't have health insurance and no will even consider him because he has colitis. I'm sure that surgery is extremely expensive. He has his own little business with just himself and would have to pay for it. I know it would be well over $150,000 for the whole surgery, and he couldn't even begin to pay for that. What could he do?

summerstorm, was that 40k after insurance or just in total (if you don't mind me asking)??

I started thinking about that the other day when my endoscopy/colonoscopy cost me $500 (wth?!) and the thought popped in my head of "Oh yeah, insurance certainly isn't going to cover everything, how will I afford this surgery anyway? Will I be stuck in debt forever just because I want to get rid of my UC?"

Sad we have to worry about things like that when it comes to our health.

ComedyDork,

Wow how fast that happened, sorry to hear. Have you already met w/ your surgeon?  Yes, I too will be going to the Cleveland Clinic. I'm anticipating the surgeon I meet w/ on Thurs. will do his evaluation and whatever he does and I wouldn't probably be able to have it done for a couple of months. I will let you know how I make out. Let me know how things go for you.

Good luck.

Tammy