Community Forum

I was diagnosed with Uclerative Proctitis then Clolitis about 2 years ago.  I have been on everything and what only seemed to work was prednisone.  I am currently on 40mg of that as well as Asacol, 6MP, Remicade (just got my second infusion) Cipro/Flagyl (just started) and 2 cortisone enema's! Things are slightly better but eveytime I go back on steriods it seems to have less of an effect.

I have been able to work but have had numerous close calls.  I work in a service field that requires me to drive a lot and get stuck in Boston traffic.  Right now I feel like a prisoner in my own home afraid to go anywhere far.  I can't play with my kids much and my relationship with my wife is stressed because she is worried about me.

 I right now go about 6-10 times a day with urgency and mucus.  The blood has gone away for the most part (probably because of the prednisone) but my quality of life sucks.  It is getting very old even though it has only been 2 years. So.....

1) How long is the recovery based on a ileoanal pouch?  I am concerend when I will be able to get back to work.  I can do some light duty but there is heavy lifting invloved as well.

2) Did you have complications?

3) What kind of questions should I be asking my doctor?

4) In my situiation would you reccomend it?  I feel like I would be basing my decision soley on my quality of life, and that is very important but financially this is going to be really tough. 

5) I have long term disabilty at work but that kicks in after 90 days.  Are there any financial suggestions to get through this?  I hate to lose everything if I am out for an extended period of time and I am curious what others have done.

Thanks!

Peter

 Reply posted for psj1026.

If you have some time, my narrative of my live with and then without UC will give you some good info:

 Reply posted for Robert.

Robert,

Thank you for your response and good luck tomorrow!  My first thought with surgery is that I would not be better off.  According to what you said I am already going 6-10 times a day without irritation.  The urgency is what is most bothersome.  I feel like I am being irrational especailly with some of the other stories I have read about people dealing with it for years.  I will talk to my doctor about increasing Remicade.  It hasnt seemed to have done much but unless I go off the prednisone its hard to tell.  Last time I was on prednisone I was down to 2-4 times a day so with everything I am on now Im afaid it will only get worse once I taper off it over the next 8 weeks.  I have been on azothioprine (6MP) since May and that could take 6 months to kick in so I will wait for that too.  As long as I can work I will not get the surgery because it does not seem worth it at this point.  It does wear on you after a while and sometimes I would just like to cave and do it but there could be a cure or another treatmnet in a year and I may kick myself for doing it.  Theres no turning back.

 

Best of luck tomorrow, write back I would like to know how you make out.

 

Pete

 

 Reply posted for psj1026.

Peter,

I have Crohns Colitis and had my colon removed 2 years ago and was equipped with an external pouch as I was not a candidate for the J-Pouch (ileoanal). I am actually being admitted to the hospital tomorrow to have an internal BCIR pouch created so that I will no longer have to wear the external pouch. I have heard mixed reviews about the J-Pouch.A large number of people who have BCIR surgery performed actually have it to replace the J-Pouch.The primary problem with the J-Pouch is that you will have 6-10 bowel movements a day and the discharge is acidic which can significantly irritate your rectum.I have experienced a great deal of irritation from the discharge in my abdominal area and can't imagine passing this discharge through my rectum.I would suggest looking into all surgical options.I found out about the BCIR on my own by surfing the net.

I took the same medications and was on Remicade for several years.I would recommend that you discuss increasing the frequency of your Remicade infusions with your doctor.If all else fails,definitely get a second opinion before having surgery.There may be other treatment possibilities that your doctor is not aware of.Personally,in hindsight I wish I had explored more options prior to having my surgery.Your quality of life will improve but will not likely be what it was before you became sick.

From a financial perspective, I am lucky as I can utilize short term disability benefits which kick in immediately for me and covers my expenses so I don't have any financial suggestions for you.

Hopefully this helps somewhat.  I will be in the hospital for the next 3 weeks and will be checking my e-mail once I am capable of doing so. Please let me know if you have any other questions but be patient as it may take me a while to get back to you.

Regards,

Robert

Considering Surgery w/UC and have questions.Trissy,

 

Thank you.  I am seeing a Dr at *** now that I switched to after my last one suggested Remicade and I wanted a second opimin from a really good hospital.  He said I may want to consider surgery soon if this does not work.  I was basically told its my last resort at this point and that surgery is a good option for me.   My hope is that I can get unbiased opinions from those who decided and decided not to go through with it.  I have been hopeful something would work and I am very happy for you to finally get it under control.  I am still waiting for these last drugs to have a positive effect before I cant work or have one too many close calls or worse.  Its only a matter of time Im afraid.  Thanks for the info it all helps in making a decision. 

 

Best,

 

Peter

Considering Surgery w/UC and have questions.Hi,
I to have considered surgery for my proctitis and colitis. I was diagnosed 4 years ago with proctitis and last year with colitis. I am 28 years old and just recently went into remmision after a long 4 years of a flare. Im originally from the east coast but am living on the west coast right now do to my husbands job.
I was fortunate enough to meet with a specialist at a university and when I asked her about surgery she had told me that its the last resort because surgery may lead to other problems and that there is more and more research coming out to find a cure that she felt that the right type of meds would be suffient. Well after trial and error I am finally in remmission, I am tapering off my cortenemas now and subsituting it with rowasa which is helping along with asacol 12 a day. 
*** is doing alot of research into different treatments right now maybe check with your insurance company and see if you are covered to go see a specialist or even *** is a great hospital.
I know it sucks though I was a medical assistant for 4 years and would have to run out of procedures  just to make sure I didnt have an accident and yes I have been there in traffic to and sadly had to sneak home and change.
You just have to do whats best for you and your family and talk with your Dr.
Best of Luck.