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Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 10/30/2008 5:05 AM (GMT -7)   
Hi im back to call on your fountains of knowledge guys!
Ive to see  my doct next week as i have some back pain under my ribs that my GP is putting down to the crohns, so she wants me to see my doc who looks after the crohns.
I really dont think its related but said i would ask if any of you get it? The only way i can describe the pain is that it feels like my insides are hurting! Its also always worse in the morning. My doc has ruled out kidney problems etc.
Also ive just finished my course of prednisolone and my feckin Rash is back. Ive had this rash for years and the dermatologist hasnt the foggiest what it is and either does my gp.
My crohns doc said its probably related to the crons. But this rash is making my life miserable when i have it. The only time its cleared up in two years is when i started the pred. And as soon as i stopped its starting to come back. Does anyone else get rashes? And why does the doc not take it seriously? I find this rash one of the worst effects of crohns. It covers me everywhere and is very uncomfortable.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/30/2008 3:57 PM (GMT -7)   
Hi I only had a rash while on Imuran are you on other meds?Sounds like it is botersome to say the least does it itch? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


vidoska
Regular Member


Date Joined Sep 2007
Total Posts : 37
   Posted 10/31/2008 2:22 AM (GMT -7)   
Rash is my middle name. I use to have in a milder form, before I was diagnosed with CD. Now I have explosions of it. I live with it, it varies in intesity, but it is almost always present. The problem is that it is in peranal, anal and vulval region. I have this problem intensified (!) after terminating with steroids (prednisone and entecort). I have tried almost everything. Doctors were quite puzzled and did not help me. Next week I will try acupuncture. So, I understand what you are going through and hope you will get some relief soon.

38 years old female, Dx'd July '06, Crohn's collitis and terminal ileitis,

Used Meds: Cipro, Flagyl, Sulfasalazine, 5ASA, 5ASA Enemas, Probiotics,B12 and Iron shots, blood transfusion, Urbason 60mg, Prednisone 20mg - Irigography, X-Ray Intesinal Passage, Colonoscopy in April 06, July 06, Hospitalized - Symptoms long before diagnozed (diarrhea, weight lost, fatigue, exhaustion, pain, subfebrile temperature, joint pain, especially knees)

Current meds: probiotics, prednisone tapering 30mg, sulfasalazine 3x1g, B12 shots, folic acid, omeprazole, xanax 2x0,25mg, alternative: royal jelly, tea mixture,

No surgery so far- History of Graves-Basedow disease in 1995


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 10/31/2008 3:05 AM (GMT -7)   
Thanks for your replies guys.
Gail - i was on prednisolone which i tapered off last week and am currently on pentasa. The rash has been with me for almost two years and seems to intensify each time it comes back. You see it goes when i am on steroids (im left with corn beef effect on my skin when the rash is not active). As soon as i come off the steroids it comes back and each time more aggressive. Its itchy and hot and weeps. And no creams help at all really. My doc thats treating the crohns says it is related to the crohns but doesnt really want to help treat it which i suppose is not her problem it would be the dermatologist. He didnt really have any answers either. Im at my wits end to be honest.

Vidoska- i would be very interested to hear how you get on with your acupuncture.Please report back

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/31/2008 1:41 PM (GMT -7)   
Roxette - I don't know if it will be useful to know the source of the problem, but it is probably due to antibodies for Klebsiella enzymes. Recent research has made the connection between those antibodies and several types of collagen in the body. See: A possible link between Crohn's disease and ankylosing spondylitis via Klebsiella infections.
There is a trial of a treatment that might help the problem if and when it is approved - essentially removing the antibodies that target the collagen, if it works. See: http://www.sciencedaily.com/releases/2008/08/080825175001.htm

Post Edited By Moderator (Ides) : 10/31/2008 5:31:42 PM (GMT-6)


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 11/3/2008 3:15 AM (GMT -7)   
Thanks for the info Keeper.
I think im im going to ask my doc to refer me to a rhuematologist to see of they can help.

Re: Back pain -is this normal or something any of you have experienced with Crohns?
I should say its not my back thats sore more the insides around the back area!

vidoska
Regular Member


Date Joined Sep 2007
Total Posts : 37
   Posted 11/7/2008 2:08 AM (GMT -7)   
Roxette, here is my report on acupuncture: The main problem seems to be in my liver. It has a lot of heat for various reasons. When that heat is going out of my body (which is good, otherwise it could go in some other direction and make another disease or dysfunction or whatever) it stops in the perianal, anal and vulval area, and, obviously, having a good time making me crazy. I can cure myself with a diet -avoid diary products for the rest of my life, and many many other food items. In essence, macrobiotics is suggested, which I can not do at the moment, so I have to go on finding relief for this nasty itching problem. What about you, how do you get on with itching?

38 years old female, Dx'd July '06, Crohn's collitis and terminal ileitis,

Used Meds: Cipro, Flagyl, Sulfasalazine, 5ASA, 5ASA Enemas, Probiotics,B12 and Iron shots, blood transfusion, Urbason 60mg, Prednisone 20mg - Irigography, X-Ray Intesinal Passage, Colonoscopy in April 06, July 06, Hospitalized - Symptoms long before diagnozed (diarrhea, weight lost, fatigue, exhaustion, pain, subfebrile temperature, joint pain, especially knees)

Current meds: probiotics, prednisone tapering 30mg, sulfasalazine 3x1g, B12 shots, folic acid, omeprazole, xanax 2x0,25mg, alternative: royal jelly, tea mixture,

No surgery so far- History of Graves-Basedow disease in 1995


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2008 3:35 PM (GMT -7)   
I just discovered a promising possible treatment for the whole range of Crohn's-related diseases - or at least the ones that are caused by auto-immune reactions. See: http://www.healingwell.com/community/default.aspx?f=17&m=1286615

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 11/7/2008 5:00 PM (GMT -7)   
I have been battling with "mystery rashes" for a while myself with no real answers or solutions. I have a friend (non-crohnie) that has similar problems, and she uses a "homeopathic" method to keep it at bay. I've had luck with other homeopathic treatments, so I'm going to find one for rashes. The other homeopathic cures I've used worked for migrains and carsickness, so I guess one for rashes might work too? All in all, it's a $10 experiment, and they'e usually easy treatments that just require letting little pellets dissolve under your tongue, and the doc always "ok's" their use because they rarely interfere with other medications. And they're available everywhere from Whole Foods to Vitamin stores. Just something to think about! Good luck, and let us know if you make any progress.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


vidoska
Regular Member


Date Joined Sep 2007
Total Posts : 37
   Posted 11/11/2008 7:13 AM (GMT -7)   
Patientspider, I have already tried homeophatic remedies (pallets). But with no result, no relief for me :( I have tried it two times, each time with different kind of homeophatic medicine (I cannot remeber now what it was). I guess I have not been lucky to get the right one that treats my problem. I would like to know which homeophatic medicine you (or your friend) used. You can email me, my email address is in my profile.

38 years old female, Dx'd July '06, Crohn's collitis and terminal ileitis,

Used Meds: Cipro, Flagyl, Sulfasalazine, 5ASA, 5ASA Enemas, Probiotics,B12 and Iron shots, blood transfusion, Urbason 60mg, Prednisone 20mg - Irigography, X-Ray Intesinal Passage, Colonoscopy in April 06, July 06, Hospitalized - Symptoms long before diagnozed (diarrhea, weight lost, fatigue, exhaustion, pain, subfebrile temperature, joint pain, especially knees)

Current meds: probiotics, prednisone tapering 30mg, sulfasalazine 3x1g, B12 shots, folic acid, omeprazole, xanax 2x0,25mg, alternative: royal jelly, tea mixture,

No surgery so far- History of Graves-Basedow disease in 1995


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 11/11/2008 7:31 AM (GMT -7)   
im back on Pred & just started Imuran. So once again the mystery rash goes unsolved until i come off the pred. It always disappears when i go on Pred.
As for my back pain the GI said it could be AS so im having tests incl. an MRi this week to try to get to the bottom of it.
Ive had the pain for at least 6 months and typically as soon as the GI decides to investigate the fecking pain disappears! Im happy its not hurting but its very frustrating after waiting so long to get answers that the problem seems to have gone! im still going for the tests as they are free and if nothing else it will put my mind at rest.
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