At the Crossroads & Making a Right Hand Turn

[Joefnh]

I had posted here a bit ago about feeling like I was between a rock and a hard place in relation to being diagnosed with Crohns and CC. After talking with some of the members here, I realized that 'being caught' was was not a good way to look at this at all.

First since my diagnosis I have had the opportunity to meet many new and wonderful people on this site, of which have developed into some true and priceless friendships. I would not have had this opportunity had this disease not 'come along'. I know that's a seemingly strange way of looking at this, but is it really strange? I did not choose CC or Crohns, but I do have to deal with them, why not do it in a positive way.

Attitude really is key to dealing with times like this and I am choosing to find the positives in this situation.

I do have good doctors, medical insurance, medication choices, dietary choices and overall resources. With these I do count myself as very fortunate at this time of my life.

In today's GI Dr's visit we again reviewed the results of my recent blood work, biopsies and pill camera images with the goal of making a decision of what to do regarding treatment options. Prior to this diagnosis I had experienced about 10 years of significant muscle / joint pain, uveitis, iritis and fatigue. It became apparent last year that the GI symptoms (D, pain & cramping) and the non- GI symptoms are related to each other at least in activity.

I discussed with Dr Nagri the option of the elemental diet, which he is aware of and would support me in that effort. The diet would be appealing in that it does not require any drugs, but would take quite a commitment. He was concerned that while the diet would probably help the Crohns and possibly the CC, he feels that it most likely would not help the non-GI autoimmune disease processes or the related symptoms such as the muscle / joint pain eye problems and fatigue. Certainly the only way to find out would be to give it a try. Keep in mind that this treatment is not a cure, but really is used to suppress flares for a modest period of time.

I have been pondering 2 courses of action over the last 2 weeks which are working with the elemental diet with its obvious benefits, or looking at one taking Immuran an immunomodulator medication that has a very good track record with Crohns and apparently CC. The Imuran route while overall a fairly safe medication, is not without it's risks including liver and pancreatic issues. Statistically though the risks are quite small, of course that is until they happen to you.

Since my diagnosis in April I have come to learn that with MC you really need to budget your energy both the physical and mental - emotional alike. If I push one of them too much, the symptoms and overall health decline.

Recently it has become apparent to me that there are areas in my life that need attention and that would take a fair amount of my mental / emotional energy. Why I am mentioning this is that in my 'budget', I am viewing that I would need to choose the experimental diet route or deal with these other issues, but not both at one time. With that in mind I have decided whats best right now for me is to take the Imuran for a while.

Fortunately or unfortunately, I will have other opportunities to deal with Crohns flares in the future, as this is a life long disease and I do not plan on taking the Imuran for much more that 6 - 10 months.

I would again like to extend a heartfelt thanks to all here for you inputs and your support, it really has made this journey far easier.

Looking at this from another angle I will have an opportunity to report on the efficacy of Imuran on CC.

--Joe

[Ginny]

Joe, what a wonderful outlook! I can not help but wish you the very best in your decision. We all learn from each other and will be anxious to hear how you are doing. I have learned the same thing:

Since my diagnosis in April I have come to learn that with MC you really need to budget your energy both the physical and mental - emotional alike

When you stated that comment, I had to stop for a minute and reflect and realized that I am now on "autopilot". I've always been the caregiver but now I have to put myself first.

This disease has opened a BIG door of friends and understanding people that you cannot find anywhere else. I will be praying for you! Ginny

[Polly]

Joe,

Just wanted to add my two cents worth and say that I think you have made a thoughtful and wise decision. You have considered all of the possible options and all of the important issues in your life right now in coming to your conclusion. Best of luck on your chosen path. I will be following your progress with great interest.

Love,

Polly

P.S. FWIW, I have a strong intuitive feeling that you are going to tolerate the Imuran well.

[Gloria]

Joe,

It sounds like you've carefully analyzed your options. I think you have to do what's best for your situation and keep your fingers crossed that you've made the right decision.

I wish you luck and will be interested in your progress.

Gloria

[mbeezie]

Joe,

I'm glad to hear you have come up with a plan. I wish you the best and hope you are only on Imuran for a short duration.

I went to a seminar yesterday "The Immune Sysytem: Mind-Body Connection". The speaker has done research on who stays sick and who gets well. Research is supporting the fact that those who have emotional intelligence tend to fare better. Here is a summary of what he said:

Who Stays Well

Anti-Inflammatory Nutrients: pro- and anti-inflammatory proteins, fruits, vegetables, starches, and fats; omega 3- and 6 fatty acids; resveritrol and related compounds; fish and the prevention of depression.
Regular Physical Activity: activities that enhance endurance, strength, and flexibility and reduce chronic inflammation; the dose response of exercise—how much, how often, how intense?
Depression Resistance: seeing challenges as temporary, solvable and impersonal.
The Type-B Personality: replacing hostility and urgency with caring and mindfulness.
Close Relationships: overcoming social rejection, loneliness and isolation; the protective effect of close friends and family.
Emotional Resilience: adaptively responding to thoughts that could trigger immune suppression; how thoughts influence physiology, the importance of expectation and the perception of control.
Mindfulness: ability to separate oneself from ongoing aversive states; ancient Buddhism meets modern neuroscience.
Optimism and Positive Affect: acquired optimism, positive expectations; the power of the placebo and reduction of immune symptoms and need for analgesics.
Meaning: the healing power of beliefs that are life supporting, mood enhancing, and meaning infusing; key research findings.

As you go through the next few months I encourage you to deal with some of the emotional stuff you elude to in your "budget". I also encourage you to consider MRT to help design a low-inflammatory diet. I read the previous posts about the elemental diet but didn't respond (busy), but I tend to believe the effects are temporay, meaning they work because you eliminate the offeding food but symptoms will return when you start eating offending foods again - the key is to find and eliminate the offending foods forever. I am currently in a remission from my mast cell issues and I KNOW for certain that following my low inflammatory diet has helped me stay in remission. And while I support Enterolab I will say that the testing fell short in identifying all of my problem foods.

I'm with Polly - I have a feeling you are going to see improvements. I look forward to following your progress.

Take care,

Mary Beth

[Robbie]

What a great post! It's great to know you're doing better emotionally and have a new plan lined up.

[Gloria]

Mary Beth,

I have to agree with you that Enterolab is good for those that have only a few intolerances. I would never have known about some of my other no-no's (chicken, beef, cranberry, potato, etc.) without the MRT testing. I think it's important to note (at least in my case) that the MRT test is good for telling what is not safe to eat, but the foods that test as non-reactive can't be assumed safe, due to other possible types of reactions. I'd recommend the combination of Enterolab and MRT testing for multiple-intolerants, or those having difficulty attaining remission.

the key is to find and eliminate the offending foods forever.

Rats! I thought once I got this under control and healed, I'd be able to add some foods back again. I also thought that histamines were dose-related, that it's possible to eat small amounts (after having it under control). The idea that our severely restricted diet is temporary is what keeps most of us going.

Can you clarify this?

Gloria

[hoosier1]

Joe,

My friend... I drop back to the elemental diet a couple times a year when I am flaring. It does help but it is hard to do. My cravings for real food just become too strong after about a week.

But I used to purchase a canned elemental product sold by Walgreens. Orange flavor if I recall.

Now, when I am flaring, I use shakes by Jini Patel called Absorb Plus. Kind of pricey but they taste good, are low residue, are elemental, and when I add flax oil to the shake, I get the amount of fat I need to at least maintain my weight. I just ordered 4 for vanilla tubs from her.

I am a firm believer in the elemental diet. It's just that I don't have the willpower, at least not yet, to try a full two to three weeks on it. Though I know the nutrition panel suggests one can easily thrive on them.

But I wish you so much luck in you decision Joe. And if you decided to change course, you always have that option and a ton of great people who will always support you along the way, as you have for me.

Regards,

Rich

[ant]

Dear Joe

Good luck on your chosen path. I think you have already lit the way well with your clear and balanced approach.

Praying it all goes as smoothly as possible.

Best, Ant

[starfire]

You certainly seem to have found the most sensible route to take, Joe. I think you know we will all be as supportive as possible and want the very best for you.

Love, Shirley

[mbeezie]

I'd be able to add some foods back again

Gloria, you might be able to when things calm down, but some of the intolerances are permanent. I have added many fruits and veggies back but there are still some that cause loose stools. I still think I am healing though and am hopeful. Remember the article I posted a few months ago that stated full healing takes 3-5 years. I agree that the list of foods we have to avoid is longer than any of us would like.


Rich, I agree that bowel rest with an elemental diet can help bring some GI manifestations under control more quickly. When I worked as a dietitian in the hospital that was often done with TPN or elemental tube feeds, but people could never stick with drinking the stuff becasue they missed food or didn't like the taste. Anyway, I didn't mean to say they wouldn't work, but rather it might be wise to determine all food intolerances to help avoid getting the immune system revved up in the first place, IOW, being proactive in helping to prevent flares by keeping pro-inflammatory mediators low. An elemental diet will also help MC, but it's not a long term solution.

Mary Beth

[barbaranoela]

BRAVO JOE~~~~~~ there is always that *right hand turn* that is filled with wellness!!!

Great post -by the way~~~



Barbara

[Joefnh]

You realize Barbara that I have to attribute the good attitude to Gabes Tim Tam GF 'Biscuits' they really were amazing



My local health food store should be seeing their first shipment of those soon...


--Joe

[wonderwoman]

Joe, As always, I enjoy reading your posts here and look forward to reading about your progress in the future.

[Joefnh]

Thanks to all here for your great responses and heartfelt comments. I really have appreciate your inputs. I certainly owe all here a thanks for your help these past months, the support here has been more than incredible.

I am now off on the Imuran adventure. The plan is to slowly start the Imuran which will be ramped up to a dose of 150mg over the next 3 weeks. During the next 2 months I will tapering off of the Entocort. So far I have been getting pretty good at determining the different symptoms of CC and Crohns. I should be able to report on how well the CC is controlled by the Imuran

Thanks again

--Joe