Hi all,
I'm posting this just out of interest and so I have something to compare myself to as a member of the Crohn's population.
So what I want to know is exactly how you would describe your disease in terms of:
1. Pain
2. Symptoms
3. Disease progression/remission
4. Lifestyle restrictions and changes, and
5. how you cope with daily life living with your disease
My reason for posting this is that I have a fairly significant amount of inflammation in my ileum. I have about 2.90 meters of small bowel and approximately 40cm of the ileum is affected (see attachment for perspective).
Despite this, I am in no direct pain whatsoever (pain caused by ulcers or inflammation). Sure, the symptoms of trapped wind and diarrhea, which are side effects of the inflammation, can cause terrible pain and cramp-like feelings, but I hardly ever get these pains because I take wind-eze and Imodium. I don't take any drugs to alter the state of my Crohn's such as immunomodulators or steroids/anti-inflammatories except for a Frankincense extract (boswellia) which also helps with the diarrhea, just symptom suppressants.
In 2007 I had a small bowel barium enema x-ray which confirmed 2.90 meters (approx.) of small bowel and approx. 40cm of thickened (inflammed) small bowel loops but no evidence of scarring, stricturing, fistulae or abscesses. Since that time (original diagnosis) I have always considered my disease to be very stable in terms of progression/remission. It never gets any better, but it never gets any worse either, hardly any of the known "problem foods" bother me, such as vegetables. I can't eat onions, though, and whole nuts (ground is okay) but nothing else botheres me. At the time of this x-ray I was on Azathioprine, Budesonide and Pentasa, none of which had much of an effect on my Crohn's
In December 2010 I had a small bowel MRI which was interesting. The results were that my MRI is "A mirror of the small bowel enema x-ray performed in 2007" with thickened (inflammed) small bowel loops, no evidence of scarring, stricturing, fistulae or abscesses. At the time of the MRI, I was taking no drugs at all, but was/am taking Frankincense.
So I don't know what to make of my disease. It seems to be static and unvarying, unresponsive to most drugs I've tried (3 out of 5 tried including Budesonide/Aza/Pentasa). It causes me no pain and yet is deemed severe by the diagnosing physician. No damage has yet occured such as scarring or stricturing and I've had this "flare" for going on 3 years. My symptoms are easily controlled with OTC medicines and I feel no need for conventional therapy.
I know this is probably a common theme among patients, but I don't feel as if I'm a "normal" or "average" Crohn's patient. I don't think there are many patients out there that can have active disease and take nothing for it like I seem to be able to. I know that 40cm is a minority portion, being only one-seventh the total bowel length (2.90 meters), and that 40cm is not actually that much in and of iteself compared with 290cm, but I don't know what to think. Is 40cm "severe" like I have been diagnosed? How is severity measured? My opinion, is that the doctor factored in my then uncontrolled symptoms, including severe weight loss and lifestyle-altering effects to make the diagnosis of "severe", as I clearly do not have a "severely" inflammed bowel.
To end, I'd like to know if, in your opinion, I appear as a typical Crohnie, whether mild, moderate or severe, and I'd also like to know how you would describe your own disease based on the five things mentioned above.
Thanks for reading,
G
I'm posting this just out of interest and so I have something to compare myself to as a member of the Crohn's population.
So what I want to know is exactly how you would describe your disease in terms of:
1. Pain
2. Symptoms
3. Disease progression/remission
4. Lifestyle restrictions and changes, and
5. how you cope with daily life living with your disease
My reason for posting this is that I have a fairly significant amount of inflammation in my ileum. I have about 2.90 meters of small bowel and approximately 40cm of the ileum is affected (see attachment for perspective).
Despite this, I am in no direct pain whatsoever (pain caused by ulcers or inflammation). Sure, the symptoms of trapped wind and diarrhea, which are side effects of the inflammation, can cause terrible pain and cramp-like feelings, but I hardly ever get these pains because I take wind-eze and Imodium. I don't take any drugs to alter the state of my Crohn's such as immunomodulators or steroids/anti-inflammatories except for a Frankincense extract (boswellia) which also helps with the diarrhea, just symptom suppressants.
In 2007 I had a small bowel barium enema x-ray which confirmed 2.90 meters (approx.) of small bowel and approx. 40cm of thickened (inflammed) small bowel loops but no evidence of scarring, stricturing, fistulae or abscesses. Since that time (original diagnosis) I have always considered my disease to be very stable in terms of progression/remission. It never gets any better, but it never gets any worse either, hardly any of the known "problem foods" bother me, such as vegetables. I can't eat onions, though, and whole nuts (ground is okay) but nothing else botheres me. At the time of this x-ray I was on Azathioprine, Budesonide and Pentasa, none of which had much of an effect on my Crohn's
In December 2010 I had a small bowel MRI which was interesting. The results were that my MRI is "A mirror of the small bowel enema x-ray performed in 2007" with thickened (inflammed) small bowel loops, no evidence of scarring, stricturing, fistulae or abscesses. At the time of the MRI, I was taking no drugs at all, but was/am taking Frankincense.
So I don't know what to make of my disease. It seems to be static and unvarying, unresponsive to most drugs I've tried (3 out of 5 tried including Budesonide/Aza/Pentasa). It causes me no pain and yet is deemed severe by the diagnosing physician. No damage has yet occured such as scarring or stricturing and I've had this "flare" for going on 3 years. My symptoms are easily controlled with OTC medicines and I feel no need for conventional therapy.
I know this is probably a common theme among patients, but I don't feel as if I'm a "normal" or "average" Crohn's patient. I don't think there are many patients out there that can have active disease and take nothing for it like I seem to be able to. I know that 40cm is a minority portion, being only one-seventh the total bowel length (2.90 meters), and that 40cm is not actually that much in and of iteself compared with 290cm, but I don't know what to think. Is 40cm "severe" like I have been diagnosed? How is severity measured? My opinion, is that the doctor factored in my then uncontrolled symptoms, including severe weight loss and lifestyle-altering effects to make the diagnosis of "severe", as I clearly do not have a "severely" inflammed bowel.
To end, I'd like to know if, in your opinion, I appear as a typical Crohnie, whether mild, moderate or severe, and I'd also like to know how you would describe your own disease based on the five things mentioned above.
Thanks for reading,
G
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