Crohn's and UC Tell your story if you please.Heres mine!

[Vivvian's Mommy]

I was diagnosed at 12 with UC later that summer also with Crohn's.It affects my whole digestive system and my skin and bones.I have bone deteoration and arthitis.I have had 15 surgeries.Gained weight,lost weight and because of so much internal bleeding nearly lost my life 4 times.I was given until I was 22 to live.I meet my husband in 2007 when I was 22.I have had 4 ileostomies and now this one is permnant.My husband then finacee had deployed to Iraq in 2007 where they almost lost me for the 5th time.And in the military if you are not married you are just a friend so he was not allowed to come home.I had the rest of my colon and rectum removed then because of becoming spetic from an abcess draining feces and blood and pus into my body.But he called me to help me through it all.I have a hernia that the doctors can not fix as I have less then half of my small intestine left.But because of so many surgeries I am unable to have children as its a high risk to me and the baby and my husband was told that he would have to make a decision if it came down to it.I can not be on any sort of birth control as it makes me violently sick.And I am not allowed a hestorectomy for its a danger to me also because of my organs being moved.Which therefore my husband is getting vasectomy.So my husband and I have adopted a beautiful baby girl and plan on many more children through adoption to come.I am 25 years old and I am happy to say even through all the ups and downs I have faced I am so blessed.If any questions though I gladly answer what I can.I feel i am a fighter and a survivor even though it may not be a cancer I have made it this far and do not plan on given up anytime soon.

 

[MapleLeafGirl]

Whoa - sounds like you have been through quite the ordeal. Welcome to the forum!

 

[HeatherMN]

Welcome Sylvia! You have found a great resource!!

 

[sewnuts44]

I was only diagnosed because I had a boil that wouldn't heal. I wanted to get it stitched and the doc sent me to a specialist. After testing I was just diagnosed Nov. 2009 with Crohn's with Ulcerative Colitus with perianal disease. I am 47 years old. I have been prescribed Humira and started that in Feb. 2010. I am not have much luck with it so far, I have had 2 abcesses removed since starting the Humira. The surgeon thinks I need stronger drugs..

 

[belle1999]

Welcome! Sounds like you have been through a lot, Sylvia.

 

[sewnuts44]

I have found out that I am pretty sick. I have several fistulas and more on the way it appears. We have figured out that I have been sick for about 28 years. I also have TB, so we started with Asacol which helped a lot with drainage but made me swell up something fierce. But once I had had enough of the INH for the TB and could start the Humira, then we stopped the Asacol. I am not as swollen anymore, but still pretty sick. The humira only lasts about 6-8 days and then I am sick all over again. Today is day 14 and I feel miserable. Tomorrow is shot day and even then it takes a couple of days before I am not so miserable. The only thing that I notice for sure is that my stomach goes away. I am also fiber intolerant and fructose intolerant. How's that for a combo?

 

[Vivvian's Mommy]

I so understand about the abcesses and fistulas.I actually started getting mine after taking Remicade.Never in the 7 years before that had I had a problem with them.I now take the Humira thus far have been doing good but my symptoms from it hit like a day before until a day after I take them.I get naseated,lose hair,am fatigue and have a constant headache through it all.But I think I have come a long way with the drugs.Through the steriods,pentasa,6mps,cipro along with pain killers and others.This is the best I have been.

 

[sewnuts44]

The first fistula was the clue that something was wrong. I have 8 of them now and they seem to be growing wildly. The crohn's is still active and there isn't any healing so far. They think it could take until the end of the year before I start feeling better. It seems like a long ways away, especially when they told me a couple months of Humira and I should be feeling much better!

 

[sewnuts44]

What do you take the Imuran for?

 

[Vivvian's Mommy]

Yeah thats how I was with my other drugs especially the internal bleeding.My GI Doctor never had a child patient.I got so bad he couldn't deal with my suffering so much after trying everything he did for an adult patient so he sent me to Ann Arbor,MI.When I couldn't go there anymore I went back to him.He did what could and I must give him credit for it.He refused anymore children after me.

 

[Starrburst12]

You have been through so much! I am also 25 and my husband is active duty Navy, he is on a submarine. Is your husband still active duty?

 

[Vivvian's Mommy]

You have been through so much! I am also 25 and my husband is active duty Navy, he is on a submarine. Is your husband still active duty?

No thankfully.I mean it was good for benefits and pay but I feel he shouldn't have to stand up for me everyday.He should have been able to do his job but the guys in his unit prefered to harrass him all the time about my medical.He asked to be PCSed to the East coast closer to home and they told him they didn't need his MOS over there.He even asked to be moved to a different troop which they refused.So when his ETS date came up he said so long.He is going to College this Fall to become a Registered Nurse.I am proud and happy for him.He stood up for what he believed in and thats all I asked out of him.If he wanted to stay in the ARMY that was his decision.He didn't thoughand so far we have been doing good.We have a home and live closer to our families and until the GI Bill kicks in for schooling in the Fall we have money still left to get us through.