Diagnosis: Crohn's Disease

[LixyChick]

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?

[TinTennessee]

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

[Lilith]

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))

[Coach Knight]

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

[dicksbro]

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! :)

[PantyFanatic]

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

[imaginewithme]

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

[jennaflower]

(((((((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

[scotzoidman]

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....

[Neige]

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

[osuche]

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

[wyndhy]

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.

[Aqua]

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.

[fzzy]

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!

[inmydreemz]

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 :) :)

[PantyFanatic]

NOT ice cream!!!! Say it isn’t so :eek:




lol ;)

I want to tank you, InMyDreemz, for stepping up with insight that only you can share. I wanted to send you a personal thank you PM, but while you are not set-up to get PM’s, you have been around for a couple years and just shown me that there are true Pixie in heart who do not post frequently, but come forward when needed. This couple happens to be very special to me and having no knowledge to offer is frustrating. You just taught me that being part of this family has rewards we are not even aware of.

Thank you :)

[Sharni]

(((To you both)))

[Soundman]

Lixy,

Know that you and Mr. Lixy are loved and supported here.

Soundman

[Steph]

My sister's ex-fiance has Crohn's & I've known him for 15 years. A girl from high school had it & we thought she had anorexia (terrible, I know). A good pal from university had it. It's really common in Newfoundland for some reason.

I'll PM you (((((((((((((((((Lixy & Mr. Lix))))))))))))))))))))))))

[LixyChick]

TT...TY for your support and for the needed hugs! *hugs backatcha*

Lilith...It's nice to learn from those who walk the mile! Relayed your message and a broad smile ensued. I think he's learned from waiting so long in 2001 that when the body is trying to talk to you...LISTEN! *hugs*

CK...TY for caring! ;) *hugs*

dicksbro...Yes...that is a really good site. I checked out several while waiting for test results and the diagnosis. I like to know my enemy or the enemy of whoever/whatever is attacking my family. Mr. Lixy's gastroenterologist was a might impressed with my knowledge of Crohn's thus far. Rather than spewing diagnosis and directions and leaving while we pondered if we had any questions or even understood everything, he actually sat and spoke with us in detail on a level that made everything make sense. Some docs seem to think you should know all they know and understand the jargon they throw at you. Getting to know and understand the things that pertained to Mr. Lixy's particular case made it easier for all of us to talk on a level we were all comfortable with. CCFA.org (Crohn's and Colitis Foundation of America) was an especially insightful site. When I presented some of the pages I printed out (with highlighted questions) to doc he said it was one of the better sites to get answers if he wasn't available at the moment to answer them. *hugs to you and Mrs. db*

PF...Love ya babe! I PM'd ya! *hugs*

IWM...TY for caring! *hugs*

jenna...You are so sweet! TY for the open invitation! *hugs*

scotz...Yep, I'm the "keeper of the poop" in my household! :D First the hubby, then the cat, and now the hubby again! OMG! How'd I get this job? LOL! Well...someone has to do it I spose. TY hun! *hugs*

PS...((((PS))))!

osuche...((((osuche))))

wyndhy...((((wyndhy))))

Aqua...((((Aqua))))

fzzy...((((fzzy))))

inmydreemz...Yes...I understand all you've taken the time to discuss (TY for that)! We talked it over with doc and we'll talk more soon I am sure. So far he is trying 6MP and Asacol and Prednisone (to be weaned from later) along with Metronidazol (Flagyl) for the infection. Metro gives him the most trouble with stomach cramping so we are hoping it can be discontinued soon. TY again for all the great info! Knowledge is indeed power!

PF...You're so cute :)

Sharni...((((Sharni))))

Soundman...((((Soundman))))

Steph...((((Steph)))) I'll be around as often as I can!



Thank you ((((((EVERYONE))))))...for taking a moment to share and care!

[scotzoidman]

...& I thought I had a shitty job ;) ....

<sneaking a quick grope of Lixy before I dash outa here>

[maddy]

(((Lixy and Mr)))

[dicksbro]

scotz...Yep, I'm the "keeper of the poop" in my household! :D First the hubby, then the cat, and now the hubby again! OMG! How'd I get this job? LOL! Well...someone has to do it I spose. TY hun! *hugs*

Does that make you the "Poopy patroness, persistently processing pappa and pussy's poop?" :confused:





Now, I'd better run. :D

[bare4you]

While I don't know that much about the disease, I know it can't be good from what I've heard. Prayers for the both of you on this end!

[LixyChick]

LMFAO@scotz and db! I can always count on a smile when I come here!

((((maddy)))) and ((((bare4you)))) TY guys!



Just wanted to add something that I thought of after I posted and left for work the other day. Steph mentioned that Crohn's seemed quite common in New Foundland for some strange reason. I've been reading everything I can get my hands on about it and I recall reading stuff about ethnic and geographical studies. Seems that this disease is more common in developed countries than in underdeveloped ones. It is more often found in urban areas than in rural ones. And even more surprising, it likes the northern climate rather than the southern climate. That's not to say that it doesn't occur in the areas of opposition...just that it is much more prevalent in the ones mentioned.

I know there must be a clue in there ^^^ for researchers trying to find a cause and cure. Wonder what that is?

[jbh3]

God blesss you and yours...Lixy girl :)

[LixyChick]

TY ((((jbh3)))



jseal just sent me these links:

http://news.bbc.co.uk/2/hi/health/4740632.stm

http://news.bbc.co.uk/2/hi/health/4091881.stm

Check them out for what could be a splendid way for Mr. Lixy to deal with this disease :D and contribute to the cure.

The second link might also answer my question in the previous post!

Thanks again ((((jseal))))

[moose]

((((Lixy & Mr Lixy)))) thoughts and prayers for the both of you, sorry i to can not be of any help

[LixyChick]

TY for the hugs ((((moose))))

[scotzoidman]

TY ((((jbh3)))



jseal just sent me these links:

http://news.bbc.co.uk/2/hi/health/4740632.stm

http://news.bbc.co.uk/2/hi/health/4091881.stm

Check them out for what could be a splendid way for Mr. Lixy to deal with this disease :D and contribute to the cure.

The second link might also answer my question in the previous post!

Thanks again ((((jseal))))
#1 looks like a "yippee" for both of ya...
#2...looks more like a "yuck" or even a "WTF!?!?!?"

[dm383]

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

Well, I'd been wondering where you'd gotten your sexy ass to, lady! I'm glad other peeps know a lot about Crohn's, cos I have no clue over and above the miniscule amount I learned as a Student Nurse nearly 20 years ago!! :(

Hopefully Mr Lix will be "sorted out" ASAP, especially as regards the Flagyl - that I do know is well-known for causing tummy upsets!!

Please wish Mr. Lix all our warmest and bestest wishes, sweetie..... thinking of you both!

DM

[Teddy Bear]

(((((Mr & Mrs Lixy)))))

Keeping you both in my thoughts.

[LixyChick]

LOL@ (((scotz)))

TY (((dm))) & (((Teddy)))

We went to Mr. Lix's first doc office visit since his release from the hospital. He's leveled off at 206lbs. (199lbs. according to my home scale...which makes me 7lbs. heavier than I thought :eek: ...but I digress). Back in February he had a physical for his driver's license and he weighed 249lbs.

This Crohn's is one hell of a diet, eh?

Anyway...he was checked out all over and the fistula is healing but there is still a little infection at the exit site. Mr. Lix told doc he was feeling weak, his muscle tone was gone and he had no ambition to do anything. Doc said Prednisone can have this effect and he wanted to start lowering the dose. Took him down from 40mg a day to 30mg a day. Mr. Lix told him about the pain from the Flagyl and doc took him off it and replaced it with Cipro. Instead of 3 antibiotics a day he'll take 1 a day. Doc told him to get his white blood cell count checked so we can see if the minimum dose of MP6 is the correct dose to keep the cells at a level closest to that of a person without Crohn's. He talked about other things we can try as we sort through what is right for Mr. Lix.

Lo and behold...The doc visit was this Tuesday and just yesterday Mr. Lix was feeling better already! He had a bit more energy and ambition and didn't have any of the cramping he had with the Flagyl. He went to Lowes and got a kit to set up the water dispenser in our new refrigerator...and put that in! He sharpened the blades for the mower and put the deck back on the tractor and mowed the lawn back to the barn (3/4 acre)! He went grocery shopping for me and he even took out three big bags of trash for pick-up! After all of that, he cooked me the best dinner we've had in ages on the grill!

DEATH TO PREDNISONE AND FLAGYL!

I'm gonna start my diet now...to take off those 7lbs. I gained when Mr. Lixy stepped on that scale at the doctor's office!!!!!!!

[Lilith]

So glad to hear he's getting things sorted and beginning to recover.

[Steph]

This Crohn's is one hell of a diet, eh?!

My sister's ex-fiance (I miss him. I was sure they'd get married.) had three different wardrobes - S, M, & L depending on what 'diet' phase he was facing.

I know you'll keep an eye out for his health but it sounds like he's doing well right now. Best wishes, sexy PA'ers!