Community Forum

Hello all,

my name is Erin.  I am a 33 year old woman that has been diagnoised with Ulcerated Colitis.  I first began having flares of colitis in 2006 during my 5th month (May 06) of pregnancey.  The symptoms lasted through my 8th month.  I didn't know what was going on, I thought it was just my body reacting to being pregnant.  4 months after I delievered my son I had a devastating flare that lasted for 3 months before I was admitted into the hospital.  There in the hospital (in Jan 07) was when they told me I was suffering from Ulcerated Colitis.  I must say since being released from the hospital I hadn't had a flare for about a year.  It has just been recently that I have been flaring on and off for about 6 months now.  The flares are mild compare to the initial findings of the colitis.  But they are severe enough that it is causing havic in my life!  Lately I have been thinking about having a colectomy preformed.  I just wanted to get some opinons and advice about this drastic decision.  Let me explain first why I feel this is an option to look into.  Although I have only been living with this disease for 3 years I see where I am starting to live my life around the disease.  I have to monitor where I go, how long I'll be there, if the place has a nearby restroom, make sure I have extra clothes, and even certain foods to eat or drink. I have a 3 year old to worry about, I can't let this disease controll my life!  What do you think?

 Reply posted for precious.

Hi Erin;

I recently had ileoanal pullthrough surgery.  I am glad I did it.  I my case, I didn't have much choice.  It was either surgery or immune-suppressing drugs for life.  I had severe, universal colitis that was unmanageable.

My first surgery was in May of this year with the second surgery in July.  I am so happy to have my active lifestyle back.  I no longer have to stay at home for fear of public places because of my disease.  I no longer have to worry about flare ups.

The process from surgery to full recovery is a long one; but well worth it.  I recommend the surgery to anyone in your position.

Angie

 Reply posted for precious.

Hey, Erin.  I sympathize with your ulcerative colitis, since I had it for nearly forty years, all through my four pregnancies and my children's growing-up years.  In general, flare-ups don't last forever, and there are medicines that may work, sometimes for years:  Asacol, for example, then the more expensive (SUPER expensive) Immuran and Remicade.  I exhausted all the medicines and had a total colectomy three weeks ago.  (I also had my uterus, ovaries, and a fibroid tumor removed.)  I have not had any pain, and although I'm wearing a bag now, I feel absolutely great.  I walked about seven miles today, for example.  I'm scheduled to have the ostomy "reversal" surgery in December.

My advice:  try the medicines first.  But keep surgery as a good option.  You really need a gastroenterologist you can TALK to.  And I hope you have good insurance.

 Reply posted for precious.

You did not say what medications you are on.  Medications do help.  I was diagnosed with Crohn's in 1984.  They helped me for the first 25 years of my disease. This year I had a Ileostomy.  I empty the bag 6-8 times a day and at least once a night.  I do not need to rush to the bathroom, but I still need to know where they are, because the bag can fill up fast.  My suggestion is try the medications.  You will need a maintenance medication that you will be on all of the time and a medication that will get it under control when it flares.

 Reply posted for precious.

I just had the surgery getting my colon and rectum removed on August 19th and all the colitis symptoms are gone I feel great as far as that goes. However I have not had the take down yet so I am not sure how that part of it will be. I would defiantly consider all medication option before making the decision of getting a colectomy.  I am very happy with my first surgery I have been wearing the bag for a month and a half now it's not too bad but it gets annoying. I am just blessed to be alive and finally colitis free!! Hope this info helps you and good luck!! If you have any other questions feel free to ask!!

 Reply posted for precious.

I had a total colectomy in may and my takedown surgery in June. It has been a struggle to say the least. Not having a colon has been hard and you still need to manage your diet and except to have several bathroom trips a day. I do feel better, but I also have my days. The surgery is very tough and you need to prepare yourself ( remember you will most likely have a bag until things have healed from the first surgery). I hung in there as long as I could, but I was unable to even stand when I had my surgery. If I could give any advise it would be to exhaust all other options first before surgery.  I hope things get better for you. Hang in there!

Here is a website that they may help you understand the process with having a colectomy http://www.jpouch.net/photos/surgery-1/