Hi everyone,

I've been lurking for the past few days and finally got the courage to post.

So I've been suffering from UC for about 10 years, been off and on high doses of prednisone for as long as I can remember. It works great for a while then starts to fail me. It's a visious cycle. Anyway I was put on 6mp last year and started getting very nauseous, tired body aches.... so they did some tests and found that my liver levels where really high as well as my bone marrow toxicity. So my doc is now sending me to OHSU for a second opinion but he feels it is time for the dreaded surgery. I'm scared to DEATH.

It seems so extreme to me, but on the other hand taking all these meds (currently 16 pills a day) with little relief seems like a waste as well. I'm turning 30 next month, have a great job, a beautiful 4 year old daughter and I just dont know what to do or how to even approach this. Any advise, words of wisdom...anything would be great at this point.

Thanks for listening and I'm sure you'll see me around here in the next few weeks to come as I go for the second opinion and have more questions.

Thanks,
Deb

Hi Deb. I'm also in Oregon. I've had a functioning j-pouch for 4 months tomorrow. Had my colon out last July/August. I've got to say that the last few months have been AWESOME as far as how I feel physically. I was sick with colitis from the age of 21 to 33. It's nice to finally be colitis free. I do believe that surgery should be a last option but if you do end up having it - take comfort knowing that many (like myself) feel and live totally normally with a j-pouch. Just make sure you get a very experienced surgeon. Also - I agree that you have to weigh the damage that medications (especially the evil prednisone) are doing to the rest of your otherwise healthy body. Let me know if I can be of any help.
Ted.

Second opinions are great so that you can feel more confident about your decisions, unless of course there is disagreement.

However, I will tell you one thing: being steroid dependent is absolutely an indication for surgery. There are a few other options you can try, such as Remicade or cyclosporin. However, unless your liver enzymes and CBC levels quickly return to normal, you probably will not be a good candidate for those either, since those levels need to be monitored on those drugs too.

Having a colectomy and j-pouch is no guarantee that you will not need drug therapy in the future, so do not go forward with surgery for that reason alone. But, if you are unable to sustain a prolonged remission without the use of steroids and cannot take the immune modulators or TNF blockers (Remicade- which is also immune suppressing), then colectomy is your only solution. Colectomy cures the UC, but you are still susceptible to pouchitis, cuffitis (inflammation of the retained rectal cuff), and functional bowel disorders. There can be serious complications, but overall, it is a pretty safe surgery with a very high satisfaction rate- 90-97%, depending on where your surgery is performed.

Of course, colon cancer is also a concern once you have had the disease for more than 10 years, but unless you have pancolitis or known dysplasia, it is more of a secondary issue.

Do your homework. Ask lots of questions. Don't sign up for surgery until you are really sure it is for you. We won't kid you and say it is easy. It isn't. It is a tough surgery with a tougher recovery. Some people sail through and consider it a cake walk, but that is not typical. But what is very true, is that once you get through the adaptation period, life is quite good for the vast majority.

Jan

quote:

Of course, colon cancer is also a concern once you have had the disease for more than 10 years, but unless you have pancolitis or known dysplasia, it is more of a secondary issue.

Just curious, I have pancolitis(the whole colon)-does that mean cancer is a bigger risk factor?
Deb - welcome, I too am looking at surgery after 2 years of being on Pred/Remicade/Asacol/Rawasa/Canasa/6MP and nothing keeps me in Remission. Its takes awhile to adjust to thought of surgery...In December when my doctor first talked about the J-Pouch, I responded like you calling it the "dreaded" surgery. Now I am looking forward to getting rid of my useless colon and get a life back.
Sometimes I think maybe if I change my eating habits ( what little I do eat) or stop drinking soda or try some "miracle" health nut cure that I can cure my UC. I also realize that if there was a "miracle" natural cure out there that we would all know about it and somebody would getting filthy rich off us.
Take some time to read some postings on this site. From this website I have learned so much about the whole J-Pouch and life before and after the surgeries that it has made my decision to get the surgery done ...
hopefully in a couple of weeks when my doc comes back from vacation.
Good Luck - Hope this helps!
David

Yes, colon cancer is primarily a concern to those with a pancolitis diagnosis, regardless of whether or not it has been maintained in remission. Those with left sided colitis that is kept mostly in remission have practically the same risk as the general population.

Jan

Thanks everyone for your replys. After reading more on this site I realize there is yet one more MAJOR factor for me to take into consideration. I would love to have another child in the next couple of years and from what I've read there are quite a few women who have had trouble accomplishing that naturally so something I will certainly have to look into further.

Thanks again and I'll keep you all posted with the second opinion!

I was on 6MP for 4 years and had some of the same issues you are with the bone marrow suppression and such. It was not a good time in my life. I had my colon removed in November 06 due to toxic megacolon, and I'm having my takedown surgery next week. The surgeries have not been without their problems, but all in all it's wonderful to be able to eat almost anything I want after living on Ensure shakes for so many years.
Best of luck to you!

Yes, there is a definite increase in the risk of infertility in women who have the j-pouch procedure. This is mostly related to the rectal dissection and j-pouch creation surgery, not the colectomy. One option you can consider is to have the colectomy with an end ileostomy to get rid of the diseased colon (and reduce your risk of illness during pregnancy). The rectum would be left in place for a j-pouch at a later date. Disease can continue in the retained rectum, but it can be treated with topical mesalamine or hydrocortisone.

http://gut.bmj.com/cgi/content/abstract/55/11/1575

http://www.ccfa.org/info/surgery/surgeryuc

Jan

Hi Deb,

We too have just signed on to this community after checking things out. Mark has had UC for 6 years and on July 6th, we will leave eugene, oregon and head to San Fran to do the first step in surgery. It has been a long process to make this decision, however, I know, he knows, we know that this is the right decision and that he is lucky to have this as an option to improve his quality of life. I think going to OHSU and talking to all the professionals you can is great, we went to 4 doctors, 2 in Oregon and 2 in Cali prior to knowing this was the right decision. It just takes time to adjust to the idea.

Take care,
Megan

I am glad I have another reason to get my colon out being pancolitis is a high cancer risk...They are leaving a little bit( I think he said a couple of cms) of my rectum to hook the J-Pouch up to...my doc said has long as I get checked regularly it should be no problem,
Is that right?
Just found out that I have an ostomy class to go tommorow...get to learn how to say hello to my new little friend...

I would not go so far as to say that you are in a high cancer risk (of course it all depends on what your definition of high is), but the risk as compared to the general population increases each year after 10 years from diagnosis. I can't remember the exact numbers, but this link (2002) indicates a 2% risk at 10 years and an increase of .5-1% per year after that. Most cancers occur in pancolitis. http://gut.bmj.com/cgi/content/full/51/suppl_5/v10

There is a very small but real risk of cancer/dysplasia in the retained rectal cuff, but as your doctor pointed out, this is easily monitored. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

Before I went into a terrible flare necessitating colectomy, I had planned on having a prophylactic proctocolectomy and j-pouch due to more than 20 years since my diagnosis of pancolitis and the associated cancer risk. Most of those years were in full remission.

Jan

Hi Deb,
I'm in Portland and had a great surgeon (not at OHSU) if you want his info, let me know. They did my surgery 7 years ago and in two steps. I was also taking prednisone and was on 16 pills per day and not getting any better.

I didn't have much of a choice, my colon was so bad that they said it was just about to perforate - I was losing blood and getting very sick.

I am so glad I had the surgeries. For the short time I had UC it was so miserable and painful. I have had a great 7 years with the pouch (knock on wood) and in your question about pregnancy, I am now 23 weeks into mine and doing very well.

So, if you ever want to talk about it, let me know. I know how scary it is to look at surgery and then pregnancy in your current condition but maybe I can help answer some of the unknowns at least from my experience.