Dear dear friend seems to have suffered IBD for years

[susie]

Hi all,
Thanks for building this great community, I'm so grateful for how powerful real, normal people + the net can be for something as scary, misunderstood and even downright dismissed as inflammatory bowel diseases.
I'm a biomedical researcher (immunologist-geneticist) and even though I casually read about IBD during my training (there are pretty nice experimental models of Crohn's in mice) I only got to actually learn about it in humans when I found out that the stories of a very close friend seemed to ring a bell about a long standing uncontrolled inflammation rather than years of bad luck with isolated gut infections and then additional bad luck with muscle and joint pain and rolling of the eyes from the rheumatologists.
Anyway, the more I learn the more I think he might have Crohn's but considering that is not great news and that I am neither his MD nor his wife all I can do is to suggest he go see if that might actually be the case.
It would be great if I could tell him "hey, I think what you have is this and I have here the magic pill that would cure you from it forever". But not really.
So I plan to be around here, learning about the best ways I could help him.
And I would probably be jumping in at medical/inmunological related concerns I might know about: the whys and hows and what-ifs for those of us who would like to get the whole picture and from it the possible ways to fix stuff.

Hugs to all. I really admire the way you carry yourselves around in here, so classy and kind and cheerful in spite of the pain.

susie

 

[ameslouise]

Hi Susie and welcome.

You are a kind and considerate friend. You are right not to interfere, but perhaps a well-placed hint or "by the way" might lead your friend to water and even make him drink.

In the meantime, you will find tons of information and knowledge here!

I love your avatar picture -where is that taken?

- Amy

 

[Keona]

hey Susie
You sound like a great friend!
Have you thought about telling your friend about this site? He can look around and see for himself if he has it. I know for me, when I first heard of Crohns, I came here and the more I read the more I identified and the less scary it became.

I love to read about friends coming on here on behalf of the person suffering as well - It is amazing how much easier things become when you have someone or people who try to understand ... makes me smile

Welcome to the forum and I hope you are able to learn the best way to help him :bigwave:

 

[susie]

Hey Amy and Keona,
Thanks for the welcome. My friend is *really* not into computers, I mean, he is still using the same desktop that I knew when he directed my thesis is 1995. He barely reads email so net forums are not a realistic option. I'm therefore appointing myself as the "designated messenger" , say, to distillate what I find and convey it to him by non-electronic means..
(And funny, I don´t really know where the trees in my avatar are located: the pic was taken by a friend who's not around anymore. He just entitled it "Some trees". Gives me peace, somehow.)
Cheers and see ya 'round.
susie

 

[Crohn's 35]

Hi Susie and welcome!!!! Yes, as others mentioned you are a great friend! Is there a possibility you could give us his back ground , country and what meds he is on. Different countries have different names for meds and sometimes others can get you help from another source. I too love the avatar. My daughter is also pondering of becoming a doctor or researcher, she loves cutting edge knowledge and is amazing in Art and photography. Dunno where she gets all that talent, I think she was switched at birth :lol:

If there are any question you have, let us know his background then the persons with his experiences and severity can help better. Glad you are here!!

 

[susie]

Hi, Pen and thanks.
Good idea, to give the details of his situation, it will help me too to clarify things.
We live in Mexico and IBD is really just started to be recognized as a disease here (hey, even celiac disease is sorta a novelty for the medical establishment: is calculated that only 9% of celiacs ever get diagnosed).

The story as I know it goes like this:
My friend is a MD PhD, so he mistrusts doctors and tends to avoid them. He is 53 and has had digestive problems since he was about 30. He used to play soccer. He went through med school, got his MD with honors, did a PhD, and got an academic position. He used to play soccer.
Then he had this episode when he was unable to eat anything for weeks, constant diarrhea, bedridden from weakness and pain, and end up weighing 20 pounds less afterwards. As far as I know this was around the time his son died ("stress" would be an understatement here, he doesn´t even talk about it).
From there, he recovered (raised 5 kids, developed a career with little institutional/national/local support) but always had some sort of GI ailment that bothered him enough to send him to a long string of doctors and was eventually (over a period of several years) diagnosed with reflux, H. pylori infection, giardiasis, dunno what else, through a long and random series of endoscopies, biopsies, X-rays, blood tests, etc. So he has used bismuth, antibiotics, pump inhibitors, omeprazole, all that, for different periods of time, till he gets tired that it didn´t seem to make much of a difference. Mostly, he thoughed it off, I think.

He is a smoker but has made dozens of attempts at quitting. He drinks lots of Coke. He doesn´t eat much, but what he eats is mostly homemade and I'd think sorta balanced.
During the last couple of years he has started to experience musculoskeletal pain and stiffness, so different MD friends (internal med, rheumatologists, etc) had sorta diagnosed him with possible fibromyalgia, possible ankylosing spondylitis, possible rheumatoid arthritis, but since there has been no conclusive lab results they have mostly told him that everything is stress-related and he should worry less.
He was so used to the gastrointestinal symptoms by then that he had no reason to think the joint problems could be related, to him it was just another instance of bad luck "I always tend to catch these things that are not really diseases". And it was particularly bad luck, because the NSAIDs prescribed for the muscle/joint pain were terrible for the intestine.
In the last year that I've gotten to be a lot closer to him have been able to witness that barely a week goes by without him taking to take some time off work 'cause he is not feeling well and every morning he has to deal with joint stiffness and then muscle pain and fatigue at the end of the day. Still, he doesn´t complain and he manages to hide reasonably well that something is not right.

But last week he had to take the whole week off, a supossed infectious gastroenteritis paired with a cold: that must have been continuous diarrhea and unbearable pain, I can´t think of any other way he would have stay at home for that long.
But continuous diarrhea (not the usual couple-of-days-every-week episodes that he is used to) plus all the symptoms of a bad cold? That spells TNF to me. You know, the stuff Enbrel, Remicade, Humira, Simponi and Cimzia block, the molecule that seems to be responsible for the continuous inflammation?

I'm hoping that he doesn´t have Crohn's but that if he does his doctor is willing to take a top-down approach with TNF-blockers with him, cut the long string of things that don´t really work, I mean, give the man some pain-free time for a change...