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Posted 7/17/2009 5:45 AM (GMT 0)
Hello all,

I just posted my introduction on the Crohn's Disease forum as well. Basically I'm a 30 year old guy with a wife and a 23 month old son, and due to the damage to my colon from the Crohn's Disease my doctors are telling me that it's looking like I am going to have to have my colon removed. I'm about to start a course of remicade for 6-8 weeks after which we'll be meeting with a surgeon to get things scheduled up... my gastroenterologist is "hopeful" that I will only have to have an ostomy temporarily, perhaps for 4-8 weeks and then a second procedure to re-connect everything, but it depends whether or not the remicade treatment helps the inflammation in my rectum enough to salvage.

Needless to say that when my wife and I met with the doctor that gave us the news (my gastro referred me to Cedars-Sinai last week, which is where we got this news) I was pretty devastated. I knew I was sick with the Crohn's but didn't expect all this.

Any tips on preparing for this surgery? I don't have any exact dates or anything yet, but sooner or later the surgery is coming, sounds like by the end of September. Could be sooner if I don't respond to the Remicade and still have severe symptoms...

Thanks in advance for any input!

Tim

 

Posted 7/17/2009 1:06 PM (GMT 0)
Welcome, Tim, and thanks for sharing your story.

I can completely relate to what you're going through. I was diagnosed with Crohn's in my colon and rectum when I was 28 and was told that I had to have them removed, leaving me with a permanent ileostomy. Needless to say, I was devastated and refused to have the surgery. So, for 7 years, I tried every medicine (Remicade included) and even went on a vegan diet to try to achieve remission. Well, ultimately nothing worked, and after being sick for so long, I finally agreed to a temporary ileostomy for 6 months to see if my colon and rectum would heal if they weren't being used.

Much to my surprise, I LOVED having an ostomy! It gave me a freedom that I hadn't experienced since my diagnosis, because I didn't have to plan my life around being near a bathroom. I slept through the night for the first time in years, and I could eat a variety of foods again without being in pain afterward. My energy level returned, and life was good.

After 8 months, I started bleeding from the rectum and knew what needed to be done, so I called the surgeon's office and scheduled my proctocolectomy. After getting a trial run with the ileostomy, all of my fears were gone... Would people be able to tell that I have one? No! Would my husband still find me attractive? Yes! Would I be depressed and feel ugly? No! Could I work full time and still have the energy to exercise? Yes!

Since my proctocolectomy, I have been disease-free and medicine-free. I rarely see doctors and couldn't be happier. This ileostomy gave me my health back, so it's been a positive addition to my life. Since I accept it, I honestly forget it's there.

I just wanted to share my story with you with the hopes that it might help you with any fears you may have. Please feel free to ask us any questions you may have about the surgery or anything else. We are here to help!
Posted 7/17/2009 3:26 PM (GMT 0)
Tim,

You will be in good hands at Cedars. I had my surgeries crosstown at USC Norris. I know the idea of surgery is scary but for me the improved health made it all worth it.

Sue
Posted 7/18/2009 4:33 AM (GMT 0)
Thank you both for the responses - I really appreciate it. Glad that I came across this community as I have already read a lot of good information here.
Posted 7/18/2009 4:44 AM (GMT 0)
Hi Tim,
My story is similar to flchurchlady as in we tried every medication as well, I have crohns and was diagnosed with it 21 years ago. I currently have a temporary ileostomy which was only done early march this year but will be permanent on the 30th of this month they are doing a proctocolectomy due to severe disease in the rectum thats once again not responding to meds. It is a postive step and you will be amazed at how much better you will feel. It certainly has changed my life. Keep us posted on your progress. Take care
Posted 7/18/2009 5:19 PM (GMT 0)
I was diagnosed with CD many, many years ago. Tried the temp ileo but the CD returned. Remicade and Humira were not "discovered" for CD back then, but nothing the drs. tried worked for me to achieve a remission. 25 years ago I had perm ileo done and all of my colon, rectum and part of the small intestine removed. I have been disease free since. Life has been great with respect to the ileo. No worries and no PAIN!!!!

Thanks for sharing your story. If you have any questions or concerns, please feel free to post them. We are a very understanding community and very knowledgeable one as well. Best of luck to you,
Posted 7/19/2009 12:33 PM (GMT 0)
Welcome Tim...I can pretty much ditto everything already said! I've had Crohn's for 20 years, started with a temporary ileo which was reversed...missed it and had another temp ileo that lasted for 8-9 years and now I have a permanent ileo and feel the best I have since before my diagnosis!

I made all my decisions in regards to my ileostomy surgeries and have no regrets...that is really important for coming to terms with your situation.

As far as preparing for your surgery, make sure you are as healthy as possible...I know that doesn't sound easy considering why you are having surgery...but the stronger you are physically (and mentally) will go a long way for your recovery.

My daughter was very young when I had my worst flares and remembers mommy as always being sick...this surgery has given me and my daughter (and my husband, too!) and life of WONDERFUL MEMORIES. I have the strength to do anything I want and no need to find a bathroom every 10 seconds!

Please keep us posted on how things progress...you'll be in my thoughts :-)
Posted 7/20/2009 12:48 AM (GMT 0)
Hi Tim,

I am glad you found this site--you will get a lot of help and support here!

I had my ileostomy surgery last May, and it was also due to severe Crohn's in the colon/rectum.

I also, like you, was completely devastated when my surgeon said ileostomy surgery was what I needed to do...I had read how "ostomies are only needed for the most severe cases of Crohn's" and I could NOT believe that I ended up, at age 28, being one of those people. Why me? I thought I would never be "normal" again.

Just wanted to let you know that I am very happy that I had surgery, and I NEVER, NEVER (I mean never) thought I would say that. I thought at best I could get myself to Not Hate having an ileostomy, can't believe now I actually prefer it!!

No one can tell that you have one, and most of the time I forget the ostomy is even there...! I am a very busy teacher (well not so much right now as it is the summer, lol!), and since getting the ileostomy, I have so much more time and energy!

Good luck. This website really helped me get through the preparing for surgery, recovery, etc. It is nice to find so many kind people who know how you feel. :)

-E
Posted 7/21/2009 3:34 AM (GMT 0)

OCTim said...

Any tips on preparing for this surgery? 

Hi Tim,

The healthier you get before the surgery the better, easier, and faster your recovery will be.  I was in the hospital for two weeks simply because I was so sick and on steriods going into surgery.  #2 of 3 is on 9/1 for me and I have started walking nightly as if my life depended on it.  Anything to avoid how awful I felt in the hospital.

I haven't felt so good in years and the ileo doesn't bother me one bit -- I'm pain free and don't need to know where every bathroom in town is.  I don't know if you're active or not, a junk food aficionado or not, but if you're able to I'd suggest healthier foods and activity of some sort. 

Best wishes to you.

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