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Crohn's Disease
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Posted 6/4/2008 8:37 AM (GMT 0)
Hi all

I am new to the site, but was diagnosed with crohns in 2003, at the age of 55.
I had been poorly all through 2002 but it wasn’t until the beginning of 2003 that I started to fell exhausted and had loads of ulcers in my mouth. In the middle of February I went to the doctors who made an appointment for me to see a consultant, but this was a wait of 6 months. I gradually got worse and started to have bad diarrhea saw anther doc and he done some blood tests and found my liver function was poor. When I went for the results I was so week I collapsed in this office and was sent to hospital for admittance. I waited 10 hours in the waiting room and when I finally saw the doctor he said I could probably wait the 6 months to see the consultant. The next 2 weeks I only had stretch to crawl to the bathroom and back. In the end I was taken to hospital where I had a colonoscopy,that confirmed chrohns.

I was put on predoisolone and pentasa. I was in hospital for 2 weeks and gradually weaned of predoisolone.
Unfortunately because of the poor treatment I got 2 months after I started to feel better I had a nervous breakdown and didn't start to recover until the end of the year.
Since then I got very fit and it looked like I may be lucky in not having any more trouble -I came of all meds 3 years ago.

In Jan this year I started to get bad mouth ulcers again and as I had only had them when I had chrohns, thought I would get to the docs quick. I had blood tests done which again showed my liver function to be poor. The doc made an appointment to se my consultant, who arranged for a colonoscopy,, he said as it had been five years since I had had one he wanted to check what was going on and as there was history of bowel cancer in my family to make sure all was ok. At the time of the colonoscopy, I was not having D, and the scope showed nothing up, only a small scar from the last flare. But my liver function tests were still very poor so he done a scan (like a baby scan) on my liver and gallbladder. These also came back clear. Therefore he decided to do an MRI scan on my liver and bile ducks, which I go for tomorrow. 2 weeks ago however I started to get the big D

What is worrying me is can it be crohns seeing as the colonoscopy, showed nothing or do you think I had the test was to soon as it was several weeks after having the scan to the Big D-the mouth ulcers cleared up when the D stated.
Does anyone else have trouble with there liver when having a flare?
On top of this my depression has returned and I find it hard to just walk outside.

Lovely finding this site
Joe Sandy
Posted 6/4/2008 8:53 AM (GMT 0)
Hi there Joe and welcome to Healingwell. I hope you'll find a lot of friendship and support here.

You've hit the forum at a quiet time, but I hope that lots of people will be along in a few hours to chat with you. One thing that should become quite clear once you've spent a little time here is that it can be very, very frustrating to get a diagnosis, even when you know something's wrong. There are many people here who've gone through colonoscopies, knowing that they were sick, only to be told by the doctors that nothing showed up in the scoping.

Hang in there. Good luck with your MRI tomorrow. I hope you're able to get some answers soon, so you can start medication and (we hope) start to feel better.

Best wishes,

Ivy.

PS. I have vague memories of being told by a doctor that Crohn's can affect liver function tests, but I can't remember anything more specific than that, sorry.
Posted 6/4/2008 8:59 AM (GMT 0)

Hi Joe

Sorry to here about all the problems you are having.Personally I have not had a prob with my liver just the bowel troubles(if you can use the word "just").But as far as i know this desease can affect any digestive organ,and everyone can present in very unique ways.

Hang in there ,this is a great site and someone will be along soon who has had similar experiences.

God bless

Posted 6/4/2008 11:02 AM (GMT 0)
I have not had problems with my liver either but I've definitely had the mouth sores. But because Crohn's is an autoimmune illness, it can affect ANYTHING within your body - which is the frustrating part. Yes, Crohn's is characterized by inflammation and the immune system attacking the GI tract (mouth to anus) but when the immune system is whacked out, other body functions can weaken, too, like the liver.

For me, my ankles swell to the size of oranges when I'm in a flare. Can't walk or drive for around 2 weeks. It has taken 5 years for any doctor to acknowledge that the swollen feet are a direct result of the inflammation from the Crohn's. Now when my feet swell, my GP doesn't want me to go see him...he wants me to go to my GI.

Crohn's can present itself in very unique manners. My GI treats a Crohn's patient who has no problems intestinally (colonoscopy has come out clean for years) but because of the extra-intestinal symptoms he presented and the bloodwork, he was finally diagnosed with Crohn's. Crazy, huh?
Posted 6/4/2008 11:09 AM (GMT 0)

Hi and Welcome!!!   I'm so sorry your going through all that.   I have never had problems with the liver either.  And like you, when I do have flares and my GI does a scope, my colon is always clear showing no active disease.  Its so frustrating!!!  I'm going for a scope July 3rd and I'm really going to be mad if it shows no active disease because I am having a flare. My whole body aches and I feel like I'm 90 years old when I'm only 36.  Its really rough getting out of bed every morning.  :-(    My doctor isn't even 100% Crohn's is what I do have so I'm still waiting on some test.  But I'm almost positive I do.  However, it is frustrating when I have these scopes and they are clean.  

Posted 6/4/2008 11:51 AM (GMT 0)

Welcome Joe!

I don't believe I have had Crohn's for very long (I am not "officially" diagnosed yet, but I am hoping I will be sometime soon), but I have noticed that my symptoms seem to come in a particular order.

When I first started having problems, I remember getting the mouth sores, next was the big "D", and then my eyes flare up, and the arthritis kicks in.  I was on prednisone for a little over a month, about 2 months ago, and it all got better.  Then everything came back but worse this time, in the same order.  It seems like my extraintestinal symptoms are more prominent and constant than my actual bowel symptoms are. 

I sincerely hope you are able to get some answers soon!  This disease can be so frustrating!  My Internist and my Opthamologist are frustrated because they know something is going on but the first GI I saw would not diagnose Crohn's and her report actually conflicted with the pathologist's report (go figure!). 

Take care and keep us posted!

Posted 6/4/2008 2:01 PM (GMT 0)
Welcome Joe! Good Luck on your next test. I hope it goes well!!! Karen
Posted 6/4/2008 4:40 PM (GMT 0)
Thank you for your feedback -I am so glad I have found you all

May I ask anothr question . This afternoon I noticed my tongue was white and patchy . I used a lot of mouth wash when I had mouth ulcers and it started to look white and furry , but since I started to take Prednisolone this week it has got a lot worse .At firt I tought it may have been to do with my liver problems but I now think it may be thrush. Has anyone heard of having thrush with cronhs

SandyJoe
Posted 6/4/2008 6:06 PM (GMT 0)
Hi Joe, it does sound like you have a little thrush going on in your mouth.
I find that steroids do that to me also. I would probably go back to your mouthwash,
or ask your doctor for Nystatin or Diflucan....Good luck.
Posted 6/4/2008 11:32 PM (GMT 0)
Yep. It can happen with Pred. Gargling with salt water might help keep things at bay until you can see the doctor and get a prescription for an anti-fungal. It's something that can be treated with meds. (Soon you'll be rattling when you walk, like the rest of us).

:-/

I.
Posted 6/5/2008 12:52 AM (GMT 0)
Hi Joe,
Whenver I take high doses of pred I get mouth thrush - sounds exactly like what you have described. I just use an otc mouth wash for about a week and it clears. Good luck and welcome to HW.
Take care
Joanne
Posted 6/5/2008 4:04 AM (GMT 0)
Call this an absolutely crazy remedy but it worked for the oral thrush for me. I would not recommend it if you have open ulcers in your mouth though. And you'll want to follow this up with some regular mouthwash or a baking soda rinse, because NO ONE will talk with you if you don't!

I took a clove of fresh garlic and crushed it. I placed the crushed garlic in a 2x2 gauze pad dampened with water. I placed the compress on my tongue and shut my mouth for a couple of seconds. I can't emphasize "a couple of seconds" enough because the garlic will burn if you don't! I then followed up with a baking soda & cool water rinse. This cleared my thrush up in 3 days doing a compress once daily.

Fresh garlic has antibacterial and antifungal properties in it. Thrush, if I remember correctly, is a fungal infection and can be caused by the predinsone you are taking.

I know all of this may sound wacky coming from someone called "broomhilda" but it did work for me and maybe it could get you through until you see the Dr. I was seen in the ER not long after I did this for an unrelated condition and told the doctor about it and he seemed to be very impressed. He still offered me some Rx mouthwash should I need it in the future. To date, even after 1 1/2 years on prednisone...it hasn't returned! Good Luck and welcome to the forum!
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