Anyone suffering from Crohn's disease?

[Nielk]

I have been suffering from Crohn's since I was 15 Years old.
I wonder how many other forum members also have this illness along with ME/CFS?

Nielk

 

[Nielk]

I have been suffering from Crohn's since I was 15 Years old.
I wonder how many other forum members also have this illness along with ME/CFS?

Nielk

Crohn's is also known by the name "Ileitis"

 

[Athene]

Hi Nielk,
I don't have Crohn's, but I was misdiagnoed with it for three years so I know a lot about it. I took mesalazine right through my pregnancy but afterwards became convinced the diagnosis was a mistake. I stopped using the drugs, even though my doctor threatened all kids of catastrophic consequences if I stopped.
Anyway, you have my sympathy, it really is a dreadfull illness.

 

[Nielk]

Hi Nielk,
I don't have Crohn's, but I was misdiagnoed with it for three years so I know a lot about it. I took mesalazine right through my pregnancy but afterwards became convinced the diagnosis was a mistake. I stopped using the drugs, even though my doctor threatened all kids of catastrophic consequences if I stopped.
Anyway, you have my sympathy, it really is a dreadfull illness.

Thanks athena.
But, what I was looking for is a possible corelation of both sicknesses.
Since they both involve the immune system and have no apparent causes that we know of.
I thought I read on some threads about other people who also suffered from this illness.

By the way, today, they can definitely diagnose it via a colonoscopy and biopsy.

Nielk

 

[leaves]

maybe a lot of Chron's patients attribute all their symptoms to Chron's?

 

[Glynis Steele]

Hi Nielk,

Have you ever been tested for d-lactic acidosis? I have read that this can occur in Crohn's. I have posted on the Recent Research section about dla, if you want to read more info on it. I also have a pdf article about a boy who had carbohydrate malabsorption, with a complete bowel, who had dla, if you want to read it. Dla is mostly seen in patients with a shortened bowel.

BW

Glynis

 

[Nielk]

Hi Nielk,

Have you ever been tested for d-lactic acidosis? I have read that this can occur in Crohn's. I have posted on the Recent Research section about dla, if you want to read more info on it. I also have a pdf article about a boy who had carbohydrate malabsorption, with a complete bowel, who had dla, if you want to read it. Dla is mostly seen in patients with a shortened bowel.

BW

Glynis

Thank you for your advice.
I have been dairy and gluten free for years, and feeling better as far as my Crohn's symptoms.
It's my ME/CFS that's really acting up now.

I was just searching if anyone else had both illnesses.
I guess not by the lack of response.

Thanks,
Nielk

 

[andreamarie]

I've had Crohn's disease for forty four yrs and have been in remission for almost forty. I have occasional g.i. flares but my tests (including an M.R.I. of the small intestine) show only a small patch of inflammation that never changes. However, my gastro is a brilliant guy and feels that if you have Crohn's, even in remission, you have an abnormal immune system. I also have Sjogren's syndrome and interstitial cystitis. I posted "Does anyone have Crohn's?" many months ago but got little response.

 

[D Bergy]

I have Crohn's but not CFS. Although I do not think the two are totally unrelated. Crohn's has a dysfunctional immune system behind it, and a pathogen may be responsible for this. I am sure you can pick up any other number of pathogens as a result.

I did treat myself for the XMRV virus using an unapproved, experimental treatment method, and did respond to it in a strange way. My intestinal tract got sore while treating the first time, and when I had treated for it several times that went away, but my intestinal function was noticeably faster. In another words, I went to the bathroom more often.

I did not notice any other benefit, or any other effect from the treatment.

I have never used any standard treatment for my disease. I am pretty much 100% 99% of the time.

Dan

 

[knackers323]

I dont have crohns but my brother does, I have cfs. docs have told me it is related I wonder if anyone has tried taking crohns medication for cfs?

 

[Nielk]

I have Crohn's but not CFS. Although I do not think the two are totally unrelated. Crohn's has a dysfunctional immune system behind it, and a pathogen may be responsible for this. I am sure you can pick up any other number of pathogens as a result.

I did treat myself for the XMRV virus using an unapproved, experimental treatment method, and did respond to it in a strange way. My intestinal tract got sore while treating the first time, and when I had treated for it several times that went away, but my intestinal function was noticeably faster. In another words, I went to the bathroom more often.

I did not notice any other benefit, or any other effect from the treatment.

I have never used any standard treatment for my disease. I am pretty much 100% 99% of the time.

Dan

Hi Dan,

Did you test positive for XMRV that you started treatment for it?
The possible treatments for it are very harsh on the body.
If you are fine most of the time without standard medication, why treat XMRV?

In either case I'm happy you are feeling well.

Nielk

 

[Nielk]

I dont have crohns but my brother does, I have cfs. docs have told me it is related I wonder if anyone has tried taking crohns medication for cfs?

That's an interesting question.
My crohn's has been in remission for years (before i came down with CFS), so that i am no longer on medications for it
but when I had the full blown disease from age 16 to 30 I was on constant steroids as well as other medications.
I would be afraid to try steroids at this point since my body is so sensitive.

Nielk

 

[Nielk]

I've had Crohn's disease for forty four yrs and have been in remission for almost forty. I have occasional g.i. flares but my tests (including an M.R.I. of the small intestine) show only a small patch of inflammation that never changes. However, my gastro is a brilliant guy and feels that if you have Crohn's, even in remission, you have an abnormal immune system. I also have Sjogren's syndrome and interstitial cystitis. I posted "Does anyone have Crohn's?" many months ago but got little response.

Sorry andreamarie - I didn't see your previous post about crohn's.

I guess there are not too many of us based on the few responses.
I do believe though that there must be some relation.

nielk

 

[andreamarie]

Crohn's is an autoimmune disease, as are Sjogren's and interstitial cystitis. No one knows what causes any of them but the immune system is working overtime. Many people have tried prednisone for CFS, the few I know did not improve. The main drugs for Crohn's are immunosuppresives, some heavy duty ones given by I.V. e.g. Humira. The is also the sulfazalines, but I got violently ill on them. There is no doubt in my mind that for me all these illnesses are related in some way concerning the immune system. I do very well on the diet I'm on. One doc put me on a diet to reduce metals and within a week I was seriously ill. As bad as CFS is I will not risk losing my Crohn's remission. Crohn's can be hell on earth and my remission was a miracle; we don't have a clue why it happened.

 

[Nielk]

Crohn's is an autoimmune disease, as are Sjogren's and interstitial cystitis. No one knows what causes any of them but the immune system is working overtime. Many people have tried prednisone for CFS, the few I know did not improve. The main drugs for Crohn's are immunosuppresives, some heavy duty ones given by I.V. e.g. Humira. The is also the sulfazalines, but I got violently ill on them. There is no doubt in my mind that for me all these illnesses are related in some way concerning the immune system. I do very well on the diet I'm on. One doc put me on a diet to reduce metals and within a week I was seriously ill. As bad as CFS is I will not risk losing my Crohn's remission. Crohn's can be hell on earth and my remission was a miracle; we don't have a clue why it happened.

The same with me.
The doctor's are baffled by my remission. They also say they never saw this.
I was on prednisone for many years and when the flare ups were really bad, I was hospitalized and given IV prednisone and that seemed to help. I was also on Asulfadene. I don't know why I eventually went into remission just like I don't know why I got it to begin with.

The over reactive immune system makes sense to me in both illnesses.

thanks for your input.

 

[andreamarie]

I'm going to start another thread on ulcerative colitis since it is the sister disease of Crohn's
My doctors have seen spontaneous remissions but I am at a medical center in Boston that sees many Crohn's patients. I was critically ill, on high doses of steroids and the decision was made that since I was not responding to steroids to take me off them. And with three yrs I was sturdy again.
The genes have been found so far; they will find more. There is a familial incidence and also it is most prevalent in caucasions from eastern Europe and Scandinavian countries. Jewish people have a very high incidence. I edited a textbook on Crohn's. I remember other people did respond to my question; it was quite a while ago.

 

[Nielk]

I'm going to start another thread on ulcerative colitis since it is the sister disease of Crohn's
My doctors have seen spontaneous remissions but I am at a medical center in Boston that sees many Crohn's patients. I was critically ill, on high doses of steroids and the decision was made that since I was not responding to steroids to take me off them. And with three yrs I was sturdy again.
The genes have been found so far; they will find more. There is a familial incidence and also it is most prevalent in caucasions from eastern Europe and Scandinavian countries. Jewish people have a very high incidence. I edited a textbook on Crohn's. I remember other people did respond to my question; it was quite a while ago.

You are absolutely correct. Ulcerative Colitis and Crohn's or Ileitis are the same group of illnesses. It's actually the same illness but, it manifests itself in different parts of the digestive system

 

[andreamarie]

d lactic acidosis is a very serious complication of short bowel syndrome. Some people with Crohn's lose much of their small intestine; they are seriously ill. You cannot live without your small intestine.
Crohn's and ulcerative colitis are not the same. Ulcerative colitis only appears in the colon and does not permeate the bowel wall. Crohn's can appear anywhere from the mouth to the rectum and permeates the complete bowel wall. It is a more serious disease. You do not need your colon to live and there are wonderful new surgeries for u.c. You do need your small intestine to live so surgery is a last resort. Crohn's used to have many names but when research became computerized it was known as Crohn's after Burril Crohn.

 

[andreamarie]

I highly recommend CCFA.org for anyone with Crohn's. I helped set up the website.

 

[Nielk]

Thanks for the info.
One thing I know is that when I had active Crohn's, it would be so inflamed at times that I would get blockages and be hospitalized. The surgeons there would always want to operate but my Gastroenterologist would not let them because he said that even if they cut out the inflamed part, there is a 90% chance that it will come back in another place. So he just treated me with IV fluids and meds and I was lucky that each time the blockage opened up. During that part of my life. from age 16 to 30. the hospital was my second home.

Yet, if someone were to ask me given a choice of having active Crohn's or active CFS, I would choose Crohn's because in between my blockages, and even though I was on very strong medicines, I was able to live within the "normal" society.