Is it worth it

[Gloria]

I'm so glad you're feeling better and are at peace with your MC progress.

as I pondered 'life with MC' over my morning coffee, IMO, achieving norman doesnt have to be the main goal or the measurement of success.
and as per a recent discussion there are different opinions about what is normal.

For those of us who struggle to obtain that "perfect Norman", it's probably important to reasess what our goals are. As you eloquently wrote:

I think the measurement of success is;
being well enough to live life,
being confident enough leave the house wearing white
not having to carry a spare set of clothes in the car,
that Mc Management is melded into your life and not awkward or obvious

Those are pretty major accomplishments and we need to revel in them.

In addition to achieving the "perfect Norman", a major goal for me has always been to be able to add more foods to my diet. It's becoming clear that I may never be able to add more variety. I'm beginning to be grateful for the accomplishments I have made in this journey. I have minimized my mouth sores, am able to ride my bike in the summer, travel, garden and go about a fairly normal life. I seem to need Entocort to keep the urgency at a minimum, and I'm grateful it is available. Imodium is another "wonder drug" IMO. We are fortunate to live in a time where there are so many options available for managing MC.

Perhaps we've had a "paradigm shift."

Gloria

[hoosier1]

Hi Gabes,

I appreciated your note. It rings true for me as well. My life is actually better, even though I am limited in what I intake.

Have been under quite a bit of stress lately, and through all of it, am managing better than I deserve.

I do have something strange occurring however. I have broken out in a chronic poison ivy type rash. It is terrible on my hands. I am not sure if this is MC related but I wonder.

There was perhaps a heralding event. I failed to put gloves on before perfor ing and evidence inspection on a product that was in a fire. Some perhaps I have contact dermatitis. I haven't seen the doc yet but will soon as it is persistent.

Always glad to hear about yours, and others, progress and strong state of mind.

Rich

[tex]

Rich,

That sounds a lot like dermatitis herpetiformis. For people who have DH, they don't have to ingest gluten to get the rash - just making skin contact with gluten can do it, including using soaps, shampoos, or handling anything else that might contain gluten.

A skin biopsy can confirm it.

Tex

[Lesley]

Stupid question - what's DH?

[tex]

It's the primary skin disease that sometimes is associated with gluten-sensitivity. Many people with DH never have clinical GI symptoms, (though they do have the diagnostic markers of celiac disease), and most people with celiac disease do not have DH.

It's a nasty, extremely-itchy rash that tends to form blisters, pustules, etc.

http://dermatlas.med.jhmi.edu/derm/resu ... -577236584

Tex

[hoosier1]

Tex,

Bingo!!!! Guess what I was investigating and had my hands all over? Some burned up agricultural equipment. I looked at a bailer and a combine that week. The bailer was obviously creating hay bales and the combine was out harvesting soy beans. Who would have thought of being contaminated, literally, "on the job"!!!!!!!!

I normally wear a respirator, gloves, gear, etc. But it was outside so I was a little cavalier.

I'll be damned.

Thanks!

Rich

[Lesley]

Thanks Tex.

[sarkin]

WOW, Rich... I would also have felt safer being outside. And probably would never have suspected burnt residue for food sensitivities. For scary toxic things, sure - but then again, it turns out certain foods can be scary toxic.

Hope you get that rash cleared soon,

Sara

[hoosier1]

Hi Sara,

Yep, I get into quite a toxic mess at times. 99% of the time, I am properly suited up (especially when dealing in structures with asbestos). I take this part of my job very seriously. But admittedly, I let my guard down a couple weeks ago because I was out in the fields on nice sunny days.

My rash is still a problem today. Very itchy. And when I shower, it gets worse for a spell.

May have to get a shot of cortisone for this. It is driving me crazy. My pilot noticed my hands today when I jumped in the plane and asked me how my health has been doing lately (she knows of all of my issues and helps me to eat correctly too). I told her about what I thought happened, and she being a health nut, thought it was spot on. I didn't realize how obvious this was to others right now. I looks like a mild case of leprosy... Yikes.

Rich

[sarkin]

Rich,

I think we MCers sometimes get a more defiant version of these other conditions/symptoms. Maybe some years down the road of healing, that won't be the case.

Itchiness is so distracting. I read once that itching is essentially an extremely low-level version of pain. Not sure whether that's true (not sure exactly what that even means), but after a few days, it doesn't feel like low-level in any way. I recently had ONE little bubble of what looked (and itched) like classic DH on my finger. Pretty lucky, just the one, but it sure had my full attention far too much for a couple of days.

Hope you find something to get the symptom off your mind while your body finishes getting past this thing. (I am a big fan of Benadryl gel - the one with the turquoise-ish label - but I hesitate to recommend anything because we are all so different).

Speedy healing, friend,

Sara

[tex]

Rich,

I realize you were joking, but believe it or not, the same drug that is effective for treating dermatitis herpetiformis is also used for treating leprosy. It's called dapsone.

Consider this quote from a previous post:

Now, (as published in the New England Journal of Medicine), some Chinese researchers have found evidence that people with Crohn's disease, share certain genes with people who have leprosy, specifically, two genes known as NOD2 and TNFSF15. In the researchers' own words, "It is therefore all the more notable that leprosy and Crohn's disease have common immunologic features, including a Th1-cell response with granuloma formation". The reason why I believe that this is very important information, is because leprosy has long been known to be caused by a bacterium known as Mycobacterium leprae, and, of course, the cause of Crohn's, (and the other IBDs), is unknown. Of course, this could just be some sort of coincidence, but the fact that the diseases share these genes, and similar immunological responses, could be very, very significant.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895

I can't help but wonder if people with celiac disease and microscopic colitis might also share those genes, (IOW, I wonder if it's actually associated with gluten-sensitivity). Note that MC can also present with granuloma formation in some cases.

Recently non-necrotizing pericryptal granulomas have been described in cases of microscopic colitis. These cases should not be confused with Crohn's disease.

http://www.histopathology-india.net/MCo.htm

Tex

[hoosier1]

Tex,

That is ironic about that drug for treating leprosy. Yes, I was morbidly joking. I know that is nothing to laugh about. My rash progressed over night. My wife felt it all along the backs of my legs and alerted me to that.

Doctor gave me, guess what, a weeks worth of prednisone for my "rash". He said it didn't look like poison ivy and that if it persists to see a dermatologist. Told him about my episode in the field and he thought that was logical.

So, I would expect to do OK on the prednisione, GI-wise. If anything, it will help there, correct? Not that I need it right now.

Sara, I know what you mean about having one blister... Plus, my OCD causes me to pick at them which I know can cause infection. I left half the skin on my hands in the plane yesterday... gross.

Rich

[tex]

Rich,

Yes, prednisone should help to suppress the DH, (or whatever it is), and it shouldn't upset your GI status.

Good luck with the treatment,
Tex

[Gabes-Apg]

Thanks Gloria, Lesley and Rich

Rich - as life with MC improves, when there is minimal symptoms i think our diligence lapses a bit and that is when we are most likely to trip up

I am pretty sure that we only make mistakes like that once! and sharing your situation has ensured that many of us wont get nabbed by wheat and soy based farming equipment.
Hope the skin heals soon

take care

[JoAnn]

Gabes, I just read this thread and stand in awe of you and all you've accomplished.
You are a beautiful example and inspiration to everyone living with MC. Thank you for sharing all your ups and downs. You have incredible courage and I admire you so much.
Love JoAnn