At the Crossroads Making a Decision

[mia]

Joe- I am sending you my very best thoughts of white healing light to wrap you in and keep you safe. It really is a journey with lots of twists and turns. Tex and Polly and Linda have really given some excellent advice and thoughts here. I read something awhile ago about a liquid diet having a very strong healing effect on all IBDs and it is, of course, frequently used in hospitals when people with a big Crohns flare come in, only it's the iv and nothing by mouth). I think the difficulty is doing it long enough, and getting the proper nutrition while you do it. There are prescription liquid diets you can get if you talk to your doctor as well. As for the big meds- the 'biologics' are scary for sure. I still believe that diet is the key for all IBDs, but perhaps time is what is needed. If you do the drugs, just insist on the proper protocol for frequent checks on blood, kidneys, liver, and ALL. Maybe you will need a combination of drugs and diet for now, with an eye to reducing drugs in the future. Enough time on the diet could very possibly do that for you- one step forward, two back is not unheard of for sure with a diet approach - it's not necessarily only straight progress, Especially with a less straight forward situation like yours. Do what you need to do for where you are at right now, and if that means trying a drug and finding one that works for the Crohns, then that may be what you need at this time. Crohns has been brought well into remission with the diet as well you know, though I believe it is almost always worked out with drugs AND diet for the first years with Crohns, and the drugs are trial and error to find what can work for you.
Mia (here's a big hug for you Joe)

[Robbie]

Hi Joe,

Just found this thread and my heart sank when I read your post. I will pray for you....

[Joefnh]

Robbie and Mia thanks so much for your thoughts, it really means a lot.

To be honest with you after a lot of reflection this past week, I have come to realize that this is not a Rock and A Hard Place at all, but a crossroads with choices, and more importantly an opportunity.

Overall I am quite fortunate. I have good insurance, a great job, medication choices,a great doctor and most importantly of all some absolutely incredible friends here.

I cannot emphasize enough the value of a good and true friend. It really is beyond priceless. I hope and pray that all here have at least one in their lives. It can and does make all of the difference in dealing with times like this. I cannot imagine making this journey without them nearby.

There are unfortunately many others that would trade places with me for the options that I have now.

I cannot say I like these diseases, but it has, as strange as this sounds, these circumstances have opened my life to some absolutely incredible people, that I would have never met before this.

This could be cancer, I could be dying, I am not... I will be OK, and more importantly have found a part of my life I never knew existed before.

I would like to say thanks to everyone here and all the support you have offered. I could not have asked for a better group of people to share this time with.

Best wishes to all here

--Joe

[Tanya Lynn]

Hey Joe,

I'm so sorry to hear about your results... You have been such
an inspiration here to everyone here even though you have
have been hit with the double edge sword where you suffer from
two diseases... I admire your courage and hope and pray good
things will improve for you.

Tanya

[Joefnh]

Thanks Tanya I am feeling better about things this week and will be pondering my options before I talk to the doctor on the 15th

This really has been an interesting road, so many great people on this path

-Joe

[Polly]

Beautifully said, Joe. And thanks for putting things in perspective. Your ability to focus on the positives will be an inspiration to many. This board has been invaluable to me, too. I have said many times that I believe I would still be sick had I not found this outstanding group of people. I would never have understood the importance that SUPPORT plays in overcoming an illness either - it cannot be overestimated. And the fact that our support comes from "strangers", so to speak. It amazes me that I feel incredibly close to so many here - in some cases as close or even closer than to friends I have known for a lifetime. Whatever would we have done if we had had to suffer without our internet friends? It would be an entirely different ballgame, wouldn't it?

Love,

Polly

[Joefnh]

Thanks for all of your kind support Polly. It really is an issue of attitude. You can EASILY talk yourself into failure. I do have a tendency to allow myself to do that, focusing on the challenge as opposed to probable solutions.



I do need some help from the group. As part of my discussions next Wednesday with my doctor I would like to go in armed with research related to gluten sensitivity in the absence of a positive celiac sprue blood test.

I did find a post by Gabes here recently that has a pretty good write up. I was wondering does anybody else have other articles or research papers along these lines. I have tried searching this site, but of course searching for gluten sensitivity lists just about ever post here

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12166


--Joe

[tex]

Joe,

I'm sure you already have this one:

Elemental diet is a safe and effective treatment for acute Crohn's disease.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1441790/

You probably already have this one:

IBD has a multifactorial etiology but food sensitivity/intolerance appears to play a role, and the culpable foods vary on an individual basis. Techniques to identify food intolerance require refining.

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

How about this pathology article? CD in this case stands for celiac disease, not Crohn's disease.

Hypersensitivity to nongluten components of foods including cereals, cow's milk, soy products, fish, rice, and chicken are also associated with increased IELs in affected patients, although villus atrophy is usually present.31–37

It is the practice of one of us (I.B.) to add a comment to the surgical pathology report in cases in which intraepithelial lymphocytosis is the diagnosis. This comment states “the finding of intraepithelial lymphocytosis with preserved villus architecture is a non specific immunological phenomenon that has a large number of possible causes. A mild histological manifestation of gluten sensitivity is one of these causes. Unfortunately, celiac serology may be negative even in patients that subsequently prove to be gluten sensitive.

http://www.archivesofpathology.org/doi/ ... 2.0.CO%3B2

From Dr. Dahlman's site:

http://www.modern-diets-and-nutritional ... art-2.html

If you want to consider antibiotic treatment:

http://www.medscape.com/viewarticle/716394

Or probiotics?

http://www.ivanhoe.com/channels/p_chann ... ryid=23338

http://jmm.sgmjournals.org/cgi/content/ ... type=HWCIT

Maybe you can use something here, though it's not specific to diet:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554734/

This is in reference to MC, not necessarily Crohn's disease, (again, CD stands for celiac disease, not Crohn's disease):

Moreover, in over 10% of patients who underwent esophagogastroduodenoscopy, duodenal biopsies showed villi alterations classified as Marsh I damage, without clinical and serological data for diagnosis of CD.

http://www.ncbi.nlm.nih.gov/pubmed/20575599

Tex

[Polly]

Hi Joe,

Check out:

www.finerhealth.com/Essay

for an article by Dr.Fine explaining why his STOOL tests are more sensitive than the traditional celiac blood tests. He explains why celiac is only the tip of the gluten sensitivity iceberg.

Love,

Polly

[hoosier1]

Joe,

Just found this post. Had no idea you were having some additional problems. Will be thinking about you and praying for you. In this short time, I feel I already know you and the others.

Keep leaning on everyone, we can handle the weight :)

You talk about finding friends during times like this, and you are right. These are the best people you will ever find. When my wife was sick, it was so comforting to be amongst other spouses/caregivers, etc. I simply would not have survived without their emotional support and friendship. In the midst of a crummy situation, great things can and do happen.

Rich

[mia]

Joe- let us know what you decide to do. I keep thinking about you and hope you are feeling like you are coming closer to figuring out the best route here.
Mia