Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
I find myself in an odd position. I suffer from Ulcerative Colitis, this is not news to me. I was diagnosed four years ago shortly after being simultaneously diagnosed and cured of appendicil cancer. This left me with an immune system that loves germs and intestines that felt like the hated me as well as a handful of vitamin deficiencies (Vitamins D, B12, Potassium, and Iron deficient Anemia that requires transfusions of iron rather than supplemental pills)
For the last four years I have tried every version of messalimine (spelling!) known to man and various in the amount of dosage. I saw no improvement, but I remained unhappy though quiet as my GI doctor repeatedly told me how only the "last inch" of my colon was affected and more serious treatments need not be applied.
After what felt like an epic uphill battle to get him to agree to try a drug like Remicade, all of my other doctors weighed in with a negative response to anything that might cause immune issues. A visit to my OBGYN for a normal yearly check up lead to the discovery that touching anywhere on my abdomen was insanely painful. Eventually this lead to an ultrasound and a referral to a surgeon friend.
Upon simply hearing the name of my GI doctor he demanded his own scope. That "last inch" which was last seen in November 2015 and given the same prognosis, is now my entire colon. The entire colon.
This makes me feel better because now I don't feel like I making a pain mountain out of a molehill. However I am so utterly confused. I can not for the life of me understand why the doctor would tell and continue to tell this lie. It didn't help or hinder him in any way.
There is also the fact that what I once thought was going to a simple surgery, one that eventually included not having a colostomy bag is now most likely not an option for my future. I am anxious and confused and angry. The surgeon keeps spouting about "quality of life" and "taking our time" and I just want to burn it with fire. I feel like I have no quality of life. I don't want to take my time. I want it over with. I want to stop being in pain and I want to stop being hurt by a doctor who lied for a reason I will never understand. I want to stop lashing out at my poor husband who tries so hard because right now he keeps telling me to have hope and I feel like that is the one thing I can no longer afford. I guess I am just asking for someone to tell me that it gets better.
For the last four years I have tried every version of messalimine (spelling!) known to man and various in the amount of dosage. I saw no improvement, but I remained unhappy though quiet as my GI doctor repeatedly told me how only the "last inch" of my colon was affected and more serious treatments need not be applied.
After what felt like an epic uphill battle to get him to agree to try a drug like Remicade, all of my other doctors weighed in with a negative response to anything that might cause immune issues. A visit to my OBGYN for a normal yearly check up lead to the discovery that touching anywhere on my abdomen was insanely painful. Eventually this lead to an ultrasound and a referral to a surgeon friend.
Upon simply hearing the name of my GI doctor he demanded his own scope. That "last inch" which was last seen in November 2015 and given the same prognosis, is now my entire colon. The entire colon.
This makes me feel better because now I don't feel like I making a pain mountain out of a molehill. However I am so utterly confused. I can not for the life of me understand why the doctor would tell and continue to tell this lie. It didn't help or hinder him in any way.
There is also the fact that what I once thought was going to a simple surgery, one that eventually included not having a colostomy bag is now most likely not an option for my future. I am anxious and confused and angry. The surgeon keeps spouting about "quality of life" and "taking our time" and I just want to burn it with fire. I feel like I have no quality of life. I don't want to take my time. I want it over with. I want to stop being in pain and I want to stop being hurt by a doctor who lied for a reason I will never understand. I want to stop lashing out at my poor husband who tries so hard because right now he keeps telling me to have hope and I feel like that is the one thing I can no longer afford. I guess I am just asking for someone to tell me that it gets better.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I don'the know why your GI said only part of your colon was affected. Maybe it was laziness, maybe he forgot, who knows. When ai first started having symptoms of UC, the first GI I saw did an in off rectal exam, told me no blood present and sent me on my way without a diagnosis. I then spent the next two years getting worse. Finally a different GI got me diagnosed.
It's a life long disease with lots of ups and downs, and it can be very depressing. Surgery is sometimes a reality and I've been faced with that possibility myself. It sucks, I know. I think what helps me is just understanding all the surgical and non surgical options, so I feel that whatever happens, I decide what I want to do fully informed, and unafraid.
If it were me, I'd want to discuss my case with a GI doc. They can help guide you to the best surgeons and options. My GI told me if it comes down to surgery, he'd only suggest three hospitals in my entire state, 1 of which is an hour and a half from me at a university. He said you want the very best colorectal surgeons doing that surgery. Also, a GI will have insight into the disease and treatment options your regular doctor may not have. I'd be hard pressed to have my colon removed without my GI doctor in my corner.
I'm keeping a good thought for you. UC is such an emotionally draining disease. Hang in there.
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As for being afraid of the immune issues of Remicade I can tell you that they are not as bad as people think they will be before going on them. I have been on Remicade for 4 years now and have hardly been ill at all. I do take some extra precautions and tend to become a bit of a hermit in winter when the flu is everywhere, but that is because I just really do not want to catch it. Wash your hands all the time, wear a face mask, stay away from sick people. Things is sounds like you do or might think about doing if you get sick often anyway. Become a bit of a germ-a-phobe.
I was horribly ill before going on Remicade. Tons of pain. The Remicade made a big difference. If you want to try one last thing before surgery I would recommend trying a biologic. BUT, do it under a different GI!!!! Not this current one!
As for the surgery that is up to you. Some people have been very happy with the result afterwards and some people have not been as happy. There are some different issues to deal with after surgery. Dealing with a bag has its issues. Then if you go for a j-pouch that has some issues. There can be...leakage...at night. At least at first. Along with some other things to 'get used to'. But, the pain would be gone. Though with a j-pouch there can be pouchitis to watch for. Just things to research and think about. These are things I have learned as I have had to consider that I may loose my colon at some point in the future.
I hope your pain get better soon. I'm very sorry that you have had to go through this issue.
Rachel