Diagnosis: Crohn's Disease
 

Just last week Mr. Lixy had to be hospitalized to find out what was wreaking havoc on his body.

He had been under the care of our family physician for a week prior and was taking antibiotics for a bacterial infection which led to a rectal abscess which led to a perirectal fistula. His lumbar was affected which made walking extremely painful. He was running a low grade fever and had abdominal pains and at least 20 loose bowel movements per day (more if he would have been more diligent in counting them). He developed bumps on his shins which resembled being kicked or running into something hard, but he hadn't hurt himself that he could recall. They were very warm to the touch. His arms ached and he had chills all the time. The only time the pain would subside was when his fever broke.

In 2001 Mr. Lixy had to be taken to the emergency room with an atypical appendix imflamation. I say atypical because at the time Crohn's was discussed, but upon emergency exploritory surgery it was discovered that his appendix ruptured and instead of bursting outward, it imploded and infected the lower end of his colon which got infected and exploded. A right hemi-colectomy had to be performed in which they resected approximately 8" of his lower/large bowel (colon). They sent the resected bowel to a lab for a biopsy and no cancer or Crohn's was detected at the time.

Ever since the above mentioned operation we thought his bathroom habits would never be normal (or as close to what you and I know as normal) again. He even mentioned his frequent, emergency urgency visits to the bathroom to our family doc who suggested that due to his type of operation (doc had a similar operation) Mr. Lixy would have to learn what not to eat and how much and when to eat what he could. Till this month, we had no idea that his abdominal pains and frequent potty visits could be anything else but a side effect from the colectomy in 2001.

Lo and behold, after a week's stay in the hospital and every test under the sun, Crohn's was diagnosed. Crohn's is an attack on the immune system. A Crohn's sufferer's body thinks the bacteria found in the bowel is an infection and sends white blood cells to attack and clear up said "infection". In turn, the white blood cells have nothing really to do and so end up screwing up an otherwise healthy bowel. That's the basics of it anyway. No one knows why it happens and there is no cure, but it is treatable. The treatment is different for every sufferer. We are learning more every day.

Mr. Lixy is home now and pain free. He takes several meds and will be weaned from some and maintain others for a lifetime. The fistula is healing without surgery (so far) and he'll need to regain his strength. He's lost about 40 lbs. from all of this, since his D.O.T. physical in February.

Anyway...I was wondering...do we have anyone living with Crohn's here at Pixie's?

I just wanted to tell you that you are surrounded by love here and anything we can do to help, we will. "hugs"

I remember a member being diagosed some time ago but it's not someone who comes around often. Maybe he'll see this thread!

Tell Mr. Lixy that I'm glad he got help before things were irreparable. ((hugs))

Mrs Coach has it as well.
Good luck you guys.

Lixy,

Haven't been able to read through it yet, but I found a site:

http://www.healingwell.com/

that has a lot of information that may be good ...

some of the sections include:

Books; Directories; Message Boards and Chat; Organizations; Personal Experiences; and Research and Support.

Hope it helps. I may try to read a bit later.

But, in any case, you always have our love and prayers. Give Mr. Lixy our very best wishes! :)

Thank you so much for the update Lixy. Plaese pass on our concer and best hopes. :)

My best friend has Crohn's. She's a member but doesn't come on much. I'll see if she'll come on and check in.

From what I have learned from her......it's not something that is too easy to deal with, but she does.

Sending you hugs

(((((((Lixy)))))) I am sending you positive thoughts... I am certain that the love that you share will give you both the strength to deal with this...

If you need anything... a shoulder... an ear... whatever.. just give me a call :)

Hugs

Lixy, I recall you mentioning Mr Lixy's emergency surgery before (& that you seemed to have learned a lot more than you ever wanted to know about bowel function in the process ;) )...at one point 3 years ago, I recall someone suggesting that I might have Crohn's, but I think it just the antibiotics & Lortab I was taking wrecked my bowel function at the time, & as it turned out, I had bigger fish to fry as well...in any case, I wish you both the best, & I know that you are at least relieved to (hopefully) have the right diagnosis & treatment available now....

((((Lixy & Mr Lix))))

((((((Lixy)))))))))

i'm glad to hear they caught it before it got worse. i can't help you out on any particulars, just givin' hugs ... big ones ((((((((hugs)))))))). good luck you two.

Add my hugs and prayers to the list ((((Lixy and Mr. Lixy))))

My cousin has Chron's, diagnosed some time ago, and he is managing pretty well.

Also, Mike Mcready (guitarist of Pearl Jam) has it.

My nephew's wife has it ... I know she is affected by attacks, but I live so far from them that I don't know any of the particulars either ... sending positive thoughts and hugs to both of you!

I have Crohns
 

It is definately managable, but I have also been very lucky. I haven't had to have any surgerys yet, but that isn't to say I don't need one. I no longer take steroids, which is definately a blessing. I take mercaptipurine and Entecort and get Remicade infusions every 2 months, plus bentyl, a muscle relaxer, for the stomach cramps. Make sure to ask about the infusions. Remicade is for Rheumatoid Arthritis, but they have found that it helps with inflamation and problems due to Crohns. And the mercaptipurine, or 6MP, is a drug for chemo patients, but they have found that it helps the body from building up immunity to the Remicade so that it will still work on the Crohns. It is an up hill battle trying to figure out what meds to take, and how often, and weening off of them, etc. etc. I have been diagnosed for appx. 10 years, and I am still struggling to learn. But the Remicade has been wonderful. As far as what to eat, or not to eat, I feel everyone is different. There is no one thing that always makes me ill, except ice cream. Other than that, it is trial and error. I have also found that after a treatment of Remicade (it is administered thru IV, usually in an oncology clinic) I feel wonderful for about 6-7 weeks, but then can start to feel pain and have trouble with going to the bathroom alot for that final week. I hope things start to look up. Try not to get discouraged during treatments and trying different medications. It may take awhile to figure out what works best. I have found that staying positive helps, as well as excersising. Good luck and let me know if I can give any advice or you just want to chat. Here are a few sites to check out. http://www.ccfa.org/ http://www.crohnsresource.com/index.jsp :) :)