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I need help.  I was diagnosed with UC in October 2004.  I've tried prednisone, asacol, 6-MP, Rowasa, entocort, steroid enemas, and Rowasa.  Naturopathic medicine's include a chiropractor and some probiotics including VSL-3, Nature's Sunshine, and one from that "Maker's Diet" guy.  Nothing has worked...except prednisone.  I recently had my second 10mg/kg dose of remicade and I'm still needing prednisone to keep me in remission.  I'm depressed, I'm drinking too much and I don't care about my job.  I'm scheduled for the first step of my jpouch surgery on 28 August 2008.  I'm scared, and I'm probably in denial, but I keep feeling like the docs are missing something...even though 4 hospitals have diagnosed me with UC (I have great medical insurance).  I have read the benefits of the surgery, but on the jpouch.org website, I've read more negatives than positives.  If I'm steroid dependent, should I have the surgery?  Please help.

 Reply posted for JCHall.

Nothing in life is perfect. I am a surgeon who underwent a colectomy/jpouch formation(almost 2 years ago) with closing of an ileostomy about 4 months later.  Life is so far superior than before.  I was quite sick with toxic megacolon(near death).  No meds hepled.  The pain was tremendous with each BM, with bloody movements up to 30 times daily.   Having a jpouch has been great.  The only real dowside I have is frequency of movements,without pain, urgency or incontinence.  I have around 4-8 daytime movements and have  to get up about 4 times a night.  My sleep is disturbed but I have never looked back since.  Hope this is helpful.  Keep smililing.

Kevin

 Reply posted for JCHall.

Well, just my story but I hope it helps. I was diagnosed in 1996 when I was 50.  Finally had surgery in 2001. Didnt have much choice since I was bleeding so from UC and it couldnt be controlled.  I was very anemic and felt miserable, to say the least. The ostomy bag was awful and I cried many times as the nurse explained what I would have to do when I came home.  However, the visiting nurse service was great and came often when I first came home. With my family's help, I got through the experience. My second reversal surgery was done 3 months later and the real recovery began. I was amazed at how the human body recovers. Now, six years later, I am doing fine. I have more BM's than normal, but I can live with that.  Good luck and you must stay positive.

 Reply posted for JCHall.

Hi JC,

I'm Lori and was also diagnosed in 2004 with UC.  I have also done every medical treatment and even tried acupuncture.  Prednisone is the only drug that cleared up my flare-ups and that has caused Osteopenia, high blood sugar, and anxiety and depression.  I decided that my body and mind can't take the Pednisone anymore, so I consulted with 3 different surgeons. 

I also went on j-pouch.org and got so scared, reading about the problems.  So I posted on the site, explaining that I was considering surgery but it seemed that there was many problems from this surgery and would these people, still get the surgery with all of the problems.  Several people answered, all of which said yes they would absoulutely do it again, even with the problems they were experiencing.  Also that many people actually do very well with this surgery.  On this site, you will find more of the people with problems, because they need advice. 

I personally know someone who had this surgery 6 years ago and is doing great and is very happy to have had the surgery.  I have decided to get the surgery and feel very good about my decision.  I am looking at the long term quality of my life.  I had a very bad flare-up in April.  I am now recovered and down to 7.5mg daily of prednisone and should be off it by the time of my surgery.  Becuase I am healthy now, the recovery should be much better and there are less chances of complications.  Also, because I am in good health, I can pick my Surgeon and meet the nurses and Anesthiologist, before the Surgery.  I think it's better than waiting and possibly having to have emergency surgery and end up with a doctor and hospital I don't know. 

Ultimately it's your decision.  In the mean time, ask your Dr. about antidepressants, they really helped me when the Prednisone was causing Anxiety.  Good luck.

Lori

 Reply posted for JCHall.

Dear JC Hall [Part Three of Three]

In the end, I think I'll be glad that I had the surgery.   Unlike alot of UC patients, my flare-ups weren't dictated by my diet.  I've always been able to eat everything.  Most patients find comfort in being able to eat things that they weren't able to before.  

Ultimately, I guess my concrete advice is to do the following:

1.  Get a second opinion, or do whatever you feel is necessary to feel "at peace" with your decision.  A good surgeon (in my opinion) will not perform a surgery of this magnitude if their patient is unsure or shaky on the decision --unless the surgery is an emergency or necessary to save your life.

2.  Do not underestimate the impact that the pain and the ileostomy could have on your life.  Be realistic about it and try to accept it before you have the surgery.  I admitedly underestimated all of this and wish I was better prepared.

3.  Remind yourself that the pain and the ileostomy is a temporary means to a beautiful end.

4.  Remember that everything happens to us for a reason and we are all uniquely special for having to endure such an illness.

5.  Persevere and know at all times that this is YOUR body and you have to do what is right for you and only you.

6.  If you have the surgery, and it is successful, PLEASE tell us online.  I've had a hard time finding sites where folks discuss their successes in great detail.  It's hard for one to make a decision to have surgery when they haven't read anything but all the horror stories. 

May God bless you and all the others on this site who have endured so much.  I have such respect for all of you.

--Shawn

 Reply posted for JCHall.

Dear JCHALL [Part Two of Three]

I went into respiratory failure twice due to a reaction to the anasthesia and nearly died in recovery.  I have no memory of this, so it has not been traumatic for me to hear about it.  It was more traumatic for my mother who was in the room when the monitors and alarms went off.

Surgery was painful, but certainly controllabe with IV narcotics while in the hospital.  Relatives are still telling me stories of how comical it was to watch me cut up in my drug-induced stupor.  Once I came to, I was horrified by the sight of the stoma and cried uncontrollably for days.  I was honestly more disturbed by the bag than the fact that I almost died on the recovery table.  Again, I don't want to scare you, but I want to be as "real" as I possibly can about how I understimated the bag issue.  Even knowing that it is temporary, I still find myself repulsed by it.  I am now on antidepressants to help me deal with the bag.  I'm a single mother and have to be able to function for the wellbeing of my son;  so, I requested the antidepressants to help me get through this difficult time.

I'm now in week three of recovery and I must admit that the bag, and the pain gets a little better each day.  I no longer cry and I just simply cross off each day on my calendar at 10 p.m. every night.  I try to give myself little treats here and there in anticipation of the second surgery.  For instance, I've been buying cute little tops or undies that I plan to wear after the second surgery.  Or I'll buy a novel to read.  For me, it helps me pass the time and gives me something to look forward to.  If you opt for the surgery, I highly recommend planning something [to do that you enjoy] during your recovery periods. 

 Reply posted for JCHall.

Dear JCHall  [PART ONE OF THREE]

I'm so sorry for your recent turmoil.  I became symptomatic of UC around 1991 while I was just a college freshman.  I was officially diagnosed in 2002 almost immediately after the birth of my son.  I've done all the drugs except Humira and took a trip to the Cleveland clinic in Ohio (which is supposed to be the best facility for the care of our illness) for a second opinion before having the surgery.  I trusted my surgeon but felt that I would have an easier time making "peace" with my decision if two doctors recommended the surgery.

I was just as scared as you seem to be, if not more so.  I am admitedly vain and self conscience of my appearance (not something that I'm proud of, but I think being honest about it is important). In my teen-aged years I enjoyed a career in pageantry and have always been a "prissy", girly girl.  I only mention all this because I think one's view on personal appearance has a lot to do with their acceptance of the temporary (or in some cases permanent) ileostomy. 

Long story short, I opted to have the surgery as the physicians felt that I had gone as far as I could go with drugs and was becoming a stronger risk for colon cancer since I had the UC for so long.  I also heard stories of people waiting so long to have the surgery, that they ultimately had to have the bag permanently because of all the damage that was being done to the body.  I was CERTAIN that I didn't want to live with the ostomy forever.  I had part one of the two procedures on 7/28/08. 

 Reply posted for JCHall.

I'm in the same boat.  I go to see a second doctor about surgery on Aug. 22.  It is a hard decision to make and I am having a difficult time of it myself.  What everyone is telling me is do whatever is right for me.  I am not always good at deciding what is right when it comes to my health.  I put many things off until it is too late.  This time I don't want to do this, but I also don't want to jump the gun.  Good luck to you and let me know what you decide.