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Crohn's and a Liver transplant

Hi,
I have been diagonosed with Chron's for 12 years now and have definately seen some major peaks and valleys. In my early twenties, I was malnurished, had no ability to keep food in long enough to capture any nutrients and was seriously sick. I lost a major amount of weight (45 lbs). A few years later, I was diagnosed with PSC (primary schlerosing cholongitis). It's liver disease that has an unknown cause but isn't uncommon in patients with Chron's or Colitis. The liver disease continued to effect my Chron's. I was told that my Chron's was to the point that I needed a full colectomy but wouldn't be considered until I received a liver transplant. I wouldn't survive the surgery without it. My misson soon began to get a transplant. After a heart to heart with my doctor, I was told that my time was becoming limited. Left distrot but committed, I was called for a transplant in October, 2008. Soon after, my GI docs were willing to give me the full colectomy. Long story short, I now have a J pouch that works well for th most part. I am hospitalized about once a year with some wacky lab results that affect my liver and kidneys. Overall, I am one lucky woman with a drive for life! I have my ups and downs but couldn't be any more happy with how far I have come. I will continue to struggle at times and thought the forum would be a good idea for support and information. :D
 

Angrybird

Moderator
Hello Jacey and welcome :bigwave: (Cali too!) Well done you for the fab attitude, you come through a lot and its good to see that you have not let it beat you. I used to work in the liver transplant unit (admin side) at my local hospital (Addenbrookes's) and I was soo surpsrised when I was diagnosed with crohns at the fact that the meds they were giving me were the same as the ones they were giving the transplant patients for anti rejection! What meds a you on at the moment? I am pleased you have joined us, there is lots of info and support available here :)
 
Welcome! I'm so glad to hear you got your transplant, and that things are going so well for you. I've been facing the possibility of a PSC diagnosis, but so far, it appears they've ruled that out.

They are certainly doing amazing things to overcome these autoimmune diseases!
 
So glad you have such a positive outlook! Rock on!

My son was dx in June '09 with CD. This is his second disease, but definitely the worst of the two. It has taken him this much time just to get the CD under control. I think we have a good handle on the medication regimine now. Unfortunately, he is now showing some adverse side effects from one of the medicines. If it turns out that they have to take him off of it, we'll be starting all over. Seems like that is just the way Crohn's goes.

Could you tell me more about the PSC? Is it something that one of the medications caused? Were you predisposed to it genetically? Are there signs that we could look for? I'm afraid that this latest symptom that he has developed is liver related. I'm just trying to piece things together.

Thanks for the info. :) Hope all is well with you.
 

DustyKat

Super Moderator
Hi DillonsMom and :welcome:

I'm so sorry to hear about your boy...:hug:

I hope Jacey doesn't mind me chipping in here. PSC can develop independently of IBD but most figures place approximately 70-80% of those that have PSC as also having IBD. Then further broken down, of those 70-80%, 70% will have Ulcerative Colitis. It seems to be a manifestation of IBD affecting those with large bowel disease. It is possible but rarely affects those with Crohn's that is exclusively outside of the large bowel.

It is caused by a further autoimmune response that causes inflammation and scarring of the bile ducts. It isn't caused by medication.

What medications is your son taking?

We have a parent's forum you may like to pop by and have a look at...

http://www.crohnsforum.com/forumdisplay.php?f=49

...you will be most welcome there as you will on the wider forum. :)

Perhaps you might like to start your own thread so we can get to know you better and give you the welcome you deserve!

Looking forward to seeing you around. Welcome aboard!

Dusty. xxx
 
Welcome Jacey

All I can say is you go girl! Don't let it get you down or beat you.

I've been battling with Crohns and other health problems for 25 years and I refuse to let it beat me. I allow myself 2 down days a month and that's it, the rest of the time I just kick all my health hassles butt! :lol:

I hope you have more up than downs from now on - and keep your fighting spirit going.

Hugs :hug:

Shelli x
 
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