I would like to hear from those of you who have had your colon taken out??

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lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 5/1/2008 4:56 PM (GMT -7)   
I have been very ill off and on since I was 21 and now I am 27. Of course I have been on everything but have had some very severe reactions to the Drugs that do work of course! Well I was diagnosed with a severe Blood Clot in my Lung in October of 2007. And @ this time I was taken off of the Humira (which I was on 6 months prior) because I was being diagnosed with pneumonia for about 6-7 weeks. Well finally after I drove myself to the hospital and told them I was not leaving until they told me what was wrong, 30 mins. later I was on the heart monitor floor with a blood clot in my lung and very very ill with my Crohn's. Now that was a scary time! about 6 weeks after being off and when they found the blood clot, I was put back on the Humira. Well by this time it was too late. I am still on Humira but to this day it has not worked @ all. So I am suffering pretty bad. Severe blood loss everyday, 20 bowel movements a day, severe anemia, severe constant pain, exhaustion and not feeling human, etc. And then of course all of the emotions that go with it.

I did however apply for disability and that has been more than a FT job. But it has kept me busy so that is good. And I finally done with the worst of it.

After getting very ill with my Crohn's and blood clot, I was actually sent to the Mayo Clinic. The Mayo Clinic (in AZ) was amazing. However, really nothing they can do for me.

I am actually going to be starting OVER the Humira next week as if I was never on it. This is something that my Doctor should have done in the first place. So we will see if this works. Besides this, the next option is surgery. Now my disease is EVERYWHERE except rectum and a tiny part of my small intestine. So of course this would mean getting my COLON out. Now this scares the heck (and more out of me). So much emotion comes along with even being told this. I think the scariest things are 1. obviously not having a colon and risk for infection and having a hole from inside your body to outside 2. the fact that this is not even a cure as I have severe Crohn's and not Colitis.

I guess the whole point of this Post is to hear from people who have had this surgery before! I would love any feedback, how it has affected you etc.
Honestly, the more the better....
I mean it has to be hard!

I am young @ 27 years old and engaged and getting Married on Valentine's Day 2009! So of course I really think this all makes it harder! I have soooo much support and I am so loved and that makes it a little easier. I guess it doesn't help the pain. But I have so many people who will do everything or almost everything for me through this hard hard life!

I would LOVE any feedback I can get!

In advance I really really appreciate everyone!

Thanks so much,

LOVEPINK
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/1/2008 5:54 PM (GMT -7)   
Hello there Lovepink,

I just wanted to express my sympathy at what you're going through. You've had a horrible time, and I'm really sorry.

I've been threatened with an ostomy many times myself, but have been fortunate in avoiding major surgery so far. I know that it can be daunting to be faced with such a challenge to your body image and self-esteem... especially as (as you know) it wouldn't cure the Crohn's.

We do have people on this board who've had their colons removed, but you might find greater support by popping over to the ostomies forum and chatting with the people there. I've always found them very supportive, helpful and understanding, and I hope you do too.

With very best wishes for now, and deep hopes for your future health,

Ivy.
Co-Moderator Crohn's Forum.


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 5/1/2008 5:57 PM (GMT -7)   
Thank you so much Ivy! Like I have mentioned, anything helps and I would love to hear many people's feedback, etc. I will have to check out the other forum as well as people on here! I love these forums. Thanks so much- LOVEPINK
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/1/2008 6:12 PM (GMT -7)   
One thing to be mindful of in the ostomies forum is that the people there have an assortment of medical conditions. Some of them have been cured by getting an ostomy but just remember that that's unlikely to happen with us.

I spent some time with an ostomy nurse last year and she stressed that the people on the ostomies forum are not representative of all ostomates. They tend to join the ostomies forum because they're having trouble living with their bags. She emphasised that most people have no trouble at all living with an ostomy. I'm not sure if I believe her, but it's worth keeping in mind while you read some of the grimmer stories on the ostomies forum.

The ostomies people really are great, though. They helped me to feel much more positive about the prospect of living with a bag, and I hope they help you too.

I.
Co-Moderator Crohn's Forum.

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