Hi,

This is my first post on this list.

I was diagnosed with Crohn's Colitis about 2 1/2 years ago. I am currently having my fifth flare since then (bloody diarrhea etc).... I am an academic, and I'm basically flaring at the end of every semester, usually about 2-3 weeks before classes end, so it's maximally disruptive to my students/colleagues.... This fall, I took a week off in October to rest and hopefully avoid a flare, and I didn't miss any other classes, but then started flaring the day after classes ended. I went on prednisone, which I've done a few times before (other times i've stopped flares w/hydrocortisone enemas) -- I've always been able to taper off right away, but this time when I got down to 25 mg (from starting at 40), I made some bad food choices/had some stress and started flaring again, and had to go back up to 40, where I'm at now, and I'm finally starting to feel better.

I have an appt w/my gi doc the day after tomorrow, and I know she's going to want me to take immuran or 6-MP, and somehow suppressing my entire immune system for years does not seem like the way to address the underlying issues. But I do think I need to do something differently, and in many ways feel I am "waking up" more about the ibd .... the last few years have been really stressful, w/many things I couldn't control (e.g. deaths in the family), and I have often felt overwhelmed.... so during the 8-9 months of the year when I'm not flaring, I just haven't wanted Crohn's to be so central, and I often feel like I don't really have a disease, just that I have less energy than other people and when I get worn down I have gi symptoms.

Trying to set limits so I won't get sick in the future can feel abstract and like I'm being a primma donna (i.e. no one feels like having a meeting today, but I need to say I'm not going, cause I might get run down and flare in a month, although I'm just a little tired today ....)

I have been on asacol the whole time (ten pills a day now, not convinced it does anything). I've tried many of the supplements in LTYG -- took the natren probiotics for a long time, at various times have taken george's aloe vera, udo's oil, absorb plus shakes, l-glutamine, mucosaheal, co q 10, etc. I can't really say whether the supplements have helped or not -- nothing dramatic. Before I was diagnosed, I was a vegetarian for twenty years, and generally a very healthy eater -- many of the recommendations on the diets are things I did for years (I started eating fish last flare... very hard decision for me, but it does make me feel better) .... my eating is less healthy than it used to be w/all the low fiber white food etc.... After my first flare, I restricted my diet a lot, I was convinced that the problem was that I was eating too much when I was stressed and then this was making me flare, but then the next time I flared I was skinnier to start with, which made the flare worse .....

I also go to acupuncture and cranio sacral therapy, and have done yoga for many years (although I kind of let my practice go this past year, and I am recommitting to it more seriously because that is one thing I know that helps w/stress). I tried the EFT and didn't have much success w/it. My sense is that the primary factor in my flares is cumulative exhaustion/stress, related to the rhthyms of my job (and of course all my ways of coping w/said rhythms, some not so healthy, related to very old emotional things). I will mention, that I mostly like my job, have been very dedicated to it, and am not at a point where I'd want to leave, just trying to learn to cope better, and it's not that easy. Many people at work are very concerned about my health and are supportive of what I do to take care of myself (although there are many dysfunctional things too, and many people making unhealthy choices, as most workplaces encourage....)

One option I've been thinking about is to go on the elemental diet in the summer (whether I flare or not at the end of the spring semester)... I'm assuming I'll be able to taper off prednisone now, as I have in the past. I haven't been sick at all in the summer ... I could try going off asacol then, and just try to detox and see about repopulating (I think I've read on this forum that asacol can interfere w/the probiotics?).

Can you just schedule the elemental diet this way? I think if I tried to go on it now it would just add so much stress w/the start of the semester etc. But it makes so much sense to me to just clean out and start over. But then again, if I'm not feeling sick in the summer, not sure I'll stick w/this plan (although I'm quite sure I can stick w/the diet if I decide to do it...)

I'm interested in any thoughts, and would also be open to corresponding w/anyone who is in a similar situation for mutual support in good decison making to prevent flares .... I know that Crohn's/UC can be a whole lot more dramatic and serious than what I've experienced so far, but it's also ironic that the feeling that it "isn't really all that bad" often is a big factor in my not taking better care of myself.

I know this post is kind of long.... thanks for listening and for all your work

debbie

Hi, Debbie.

Welcome to the forum and please don't worry about what you feel is a long post. Jini wants this website and forum to be a real support to people with IBD who want to seek holistic healing. One of the best ways we can support each other is by being there to listen and empathize. No one understands what it's like to deal with IBD like other people who have it.

I think that's a great idea, to schedule the elemental diet for a time that you know will be the least stressful.

That is correct, Asacol, because it affects the pH of the colon, tends to handicap the ability of the probiotics to colonize.

I agree with you about the 6MP or Imuran. I had a very strong feeling about suppressing my immune system myself, even before I read Jini's book. I understand the clinical reasoning behind it, but it still seemed very strongly wrong when I thought about doing it. Still, we all know ourselves and our own situations best and have to go from there in making choices.

It sounds like you already have a good feel for what is contributing to your flares, behavior-wise and situationally. The challenge, not that this is news to you, is changing the situations and most especially, changing the beliefs that influence our behavior and choices. If you've been reading posts on the site, you'll already know that I'm a big fan of EFT, but if that hasn't done much to affect things for you, maybe journaling or meditation? You'll know which mind/body therapy appeals to you, what seems like it will help.

One thing I can say for sure: More and more, I believe Jini's assertion, which she's made based on working with many, many consultation clients: Most people won't regain their health long-term using naturalistic therapies unless they also address contributing mental and/or emotional issues. I'd almost say that it starts there, since these affect our choices and behavior and our choices and behavior, in turn, obviously impact our health.

On the subject of EFT and other like therapies, and this is written for the benefit of everyone who may read the post, not just you, Debbie, it may take some searching and trial-and-error to find a therapist that you really "click" with. Jini tried using EFT on her own and then with a couple of different therapists without any real, measurable success before she finally found the "right" match. I've been using EFT for several months on my own but this week, I have my first appointment with an EFT therapist, as I feel there are a couple of issues I'll benefit from having help in uprooting. I read the posts different therapists submitted to Gary Craig's free newsletter for months and eventually one therapist stood out to me as the one I wanted to work with. So I have high hopes and I'll let the group know the therapist's name if all goes well.

Consider checking out the IBD Remission Diet forum. There is a discussion thread there from December, 2006 titled something like, My daughter is on prednisone and is still bleeding. If bloody diarrhea is a problem for you when flaring, you might benefit from Jini's comments about weaning from medication(s). Of course, use your own judgment as far as whether or not to follow her suggestions. You know your own body and current situation better than anyone else can.

All the best,
Nicole

Nicole,

Thanks for your response. It's helpful to hear from someone else that my thinking about timing an elemental diet makes sense, and also that immunosuppressants also just feel wrong to you, even if there is some logic to them. Also, the forum you pointed me to was a good one (that I had read already, but apparently not at a time when it registered).

I had a thought reading your email that might be helpful to someone .... seems like it will be to me. When I was a kid, people were a lot nicer to me when I was sick. When I was in my 20s and 30s I had a lot of back problems, and I was often visibly in pain, and sometimes did like the sympathy I'd get from other people ..... had to work through that to get better, especially on developing relationships w/people who treated me well consistently. Now my health problems mostly manifest gastrointestinally, and they're much less social (everyone talks about their back problems...), so the issue isn't so much about sympathy ..... it's right here in me: I am just a lot nicer to myself when I'm flaring. As my students would say, it's kind of a duh that there's going to be some incentive to flare if I treat myself better then.....

When I first started having gi issues, I thought they were a major step up from the back issues; they seemed so much less debilitating. Then all of a sudden I had blood in my stool, the diarrhea wouldn't stop, and the only thing I could think about was colon cancer (a co worker had just died of that at 37), and it was so scary, the nurse was scolding me cause I took public transport to the health center and my blood pressure was so low I could have passed out, and then they were sticking a camera up me, telling me I was really sick and I should take enemas and also pills for the rest of my life, etc, etc..... it's just hard to get your bearings.

But at some level, this has always felt like the next step in what's going on for me emotionally, that nothing less would get my attention.... in fact, if you poked a skewer through me front to back, my gi stuff is on the exact opposite side of my body for where my back problems were.... not sure that means much, but it stands out for me.... And the thought that I could take some pills and making it all just go away is so incredibly appealing sometimes (I am grateful for my prednisone now, even while I'm up in the middle of the night writing this cause I can't seem to sleep more than four hours in a row on it, but I just feel so much better than I did a week ago).

I do keep a journal and also meditate -- in fact last night I was doing a metta (lovingkindness) meditation partly about my gi doc in preparation for seeing her today.... cause it seems like she has a horribly stressful job, which affects her perspective a lot too, want to keep that in mind. I'll be interested to hear about how your EFT goes; I did just try that from the manual and probably would need more guidance to have it potentially work for me. I do think, however, that my "toolkit" isn't the primary issue for me now .... it's very simple, very deep..... about staying present and consistently treating myself well, using the tools I have, and also about the very old underlying issues that interfere w/doing so....

take care and thanks again,
debbie

Hi, Debbie.

I think that's a great insight. Thank you for sharing that with the group as I'm sure that it will help other people as well. That tendency is one that I also found in myself. It took getting sick to MAKE me learn how to take care of myself.

Your experience of being diagnosed really resonated with me, too. When you're going along with your life, taking your good health for granted, and then all of a sudden you're dealing with a serious illness, it's like having the rug pulled out from under you. I even felt like my very identity was threatened and it does take awhile to get your bearings in the new situation.

If the fact that you're having issues on the polar opposite of your body from your back stands out to you, then I would definitely say it is significant and deserves exploration.

I had my EFT session today with Rue Haas and I would highly recommend her. She asked a lot of good questions that got me exploring connections between feelings and beliefs and the early conditioning that produced them.....I know I wouldn't have been able to hone in on all of those things anywhere near as quickly as I did with some help. Her website is www.intuitivementoring.com, if anyone's interested.

Keep up the good work; it does get better!

Nicole

Nicole,

Glad the EFT was helpful to you.... sorry, got busy w/work and didn't check this forum for a while.

I haven't made any decisions yet, but I am leaning in the other direction now.... thinking that it might make sense to go on the immuran for a few years, as my gi doc says I could go off later if I get the stress more under control. My concern is that I don't want to choose primary strategies that reinforce perfectionism, where if I make a mistake I end up sick for three months.... perhaps the drug could give me some breathing room to work out some of the emotional things. I'm pretty clear that the core issues for me are emotional, not diet, so I don't think diet as the primary focus is ultimately a solution for me.

Course it's a hard balance, how much damage does the drug do? I've talked to some people who felt the drugs gave them their lives back. Right now I'm on prednisone and having to take sleeping pills, and it's just a mess...... not sure I'm going to be able to go from that to nothing ..... a lot of the holistic approach makes sense to me, in that we are living in a world that is very out of balance and that is reflected in our health.... but then I still want to be in the world, can't retreat to some sort of state of nature or some other world that is in balance to get well..... and it might just be that some of the same things that cause the problem are sometimes part of the solution too..... in any case, it seems a hard line to walk, because the western paradigm often feels hopeless, like there's nothing we can do .... but then the holistic paradigm can be so self-blaming as if we should be able to fix everything ourselves. And I don't necesarily trust my intuition ... I've been through several rounds of things I thought were central and then I later backed off of....

In any case, that's what I'm thinking now.....

take care
debbie

Hi, Debbie.

Something I always especially appreciated about Jini's work is that it's very clear that one of her central tenets is that as a patient, one of the best things we can do is to be in the driver's seat as far as our treatment.

That means that whatever choice we make, it is OUR choice. Conventional medicine can make a person feel like a helpless victim (it did me), but if someone makes an analysis and honestly feels that that's the best route for them at this time, well then, who is anyone else to say that that's not the best route? We all know ourselves, our bodies and our individual situations far more intimately than anyone else can.

And as you point out, whether one is pursuing conventional physical treatments or more naturalistic ones, neither precludes addressing the emotional side of the coin.

So all the best to you, Debbie, and if we can be of support in the future, we're only a few keystrokes away.

Sincerely,
Nicole