New member

[kellydawn]

new member

Hello
I am a newbie around this site. I was diagnosed with Crohns in Jan 2008. I thought I had a sore tailbone from X-Country Skiing (and falling) Turned out to be a Pri-anal Abcess which turned out to be a ongoing nightmare of pri-anal abcesses, I had a total of 15 surguries before the GI doctor convinced me to have a "temporary" ileostomy to try and stop the infection. It worked with stopping the non-stop abcesses which kept coming up.
Ironically, prior to this, I had cold-sore like ulcers inside my mouth for about a year and no one knew what to do. My family doctor considered it to be Crohns and referred me to a GI, my appointment was to be March 2008. I might have been able to start drugs and avoided all the surguries had I not had to wait 8 months to see a specialist but that is the way things go.
I have had an allergic reaction to every drug thus far-Immaran, Humura, Remicade, Methatrexate. I am currently on Pred (50mg) and I have tried to get off it for the last year, but everytime I do, I get a flair up in my gut and have to be hospitalized for days.
Anyways, if there are any other people out there that have a ileostomy and have had pri-anal horseshoe abcesses, could you pls contact me. I am having a tonne of complications that the doctors keep saying is normal but I have yet to find anyone else that is going thru the same thing to tell me they are having the same complications.

 

[Dustin]

Hi kellydawn, and welcome.
I have had a couple peri-anal absesses in the past, 2 of which I have had to have surgically drained, while the rest went away under the care of Remicade. I also had problems getting off prednisone - when they got me down to 15-20mg per day, my Crohn's would flair right back up again. After 2 1/2 years, I finally stopped cold turkey - it was the only way I could get off that drug. I, however, consider myself lucky in that I have not had to get a bag as of yet. I've had a few close calls, but managed to fight my way out of it.
There are many people on this site that have experienced just about anything and everything Crohn's can throw at us, so I am sure if you post your questions, you will get multiple people telling you their experiences.

Good health and best of luck.

 

[mussen]

Hi kellydawn, welcome
sorry I'm not much help, I havn't had an experience like yours. but I am sure you will find some one around here that can help!
I hope you get some answers soon and things begin to improve for you!!

 

[teeny5]

Welcome to the forum. I am sure there is someone here who you have a lot in common with. Start asking questions we'll help the best we can.

 

[Astra]

Hi kellydawn
and welcome

I've not had any of your experiences but there are lots of help and advice here for you.
hope you get some relief soon
lotsa luv
Joan xx

 

[InkyStinky]

Hi kellydawn!

Sorry to hear you're having so much trouble. I haven't had abcesses or surgery, but I've been on and off a pred a lot - great stuff, huh? You mentioned an allergic reaction to Immuran - did you ever try 6mp/mercaptopurine? If I remember rightly it's like Immuran but some people who react to Immuran are ok with the 6mp.

Anyway, just wanted to say "hi" and "welcome"!

 

[sharon j.]

Hi Kellydawn! Welcome!

I had something quite similar, if not exactly the same, so I looked it up and found a link for you; http://emedicine.medscape.com/article/191975-overview. Hopefully it will give you an understanding of what you're going through. I'm sure you're experiencing your own kind of personal hell because nothing about this is easy. But you'll get through it. I promise you. Sometimes it can all seem very overwhelming and unfair because, quite frankly, it is. But you'll make it through. Let people take care of you if you're up for it and try to go easy on yourself. This is a very trying time and sometimes you'll be feeling sick or exhausted and your head will try to trick you by saying that you're being lazy. Follow your body's needs right now. On days when your strong you can get up and clean the entire house. On days when your weak you can't even wash a coffee cup (heck, you may not even have the energy to make the coffee to put in that cup. So don't judge yourself. We're here for you if you need us. Sharon J.

 

[sharon j.]

Kellydawn,
My sister recommends a probiotic called CULTURELLE; http://www.healingwell.com/community/default.aspx?f=38&m=1003061. It is supposed to prevent relapses in patients with Ulcerative Colitis. You can Google search it. My sister did a bunch of research while I was really sick to try to find me products that might help me. My situation is different than yours because I had adhesions, scar tissue, all over my small intestines so I was getting blockages all the time. I was an extreme case and my colon was removed in 2003 when I had surgery in which the doctor gave me a J-pouch. Hope this link helps, Sharon J.

 

[Pirate]

Welcome to the forum, Kellydawn. I hope you get answers to your questions.