feeling desperate, need advice, looking for support

[harma]

Hello everybody,

I am still in the middle of my flare, instead of things getting better is only has got worse. I am still on a diet of (plain) chicken, (plain) fish, rice, bananas, apple sauce and tea. At least I try to stick to this "yummy" diet, but does not always work, it is so tasteless and so boring.

I tried on thursday to eat a little carrots (only about 100 gram and very well cooked). During night, real pain (like a stomach flu), next morning I cleared myself out (two times massive explosive D). Also after breakfast nauseous and it all came out again (vomiting). So I even can't stand carrots anymore. I don't thing this is another food allergy, but caused by the inflamed gut in general. Same story with pine apple juice.

I am also 100% sure I don't have a stomach flu or any other infection of a virus or bacteria. I am not sick, have no fever. Also I don't think my flare is caused by a new food intolerance. So is it than a 100% stress induced flair?

Sorry while I am writing this, I started crying. I always try to approach this disease in an analytical way, not feeling sorry for myself and look what I can do to get better. Diet, life style, but at the moment I start to get a bit desperate and I do feel sorry for myself. Having this disease and having this flare. At the moment I don't know what to do, to get this under control again and so fed up with the BRACT diet.

Also, even I do have friends here, nobody really seems to understand what is going on and what it really means to have a chronicle bowel disease. Only because I am not one that complains easily and don't feel the need to make things worse than they are Not that this was different in the Netherlands. How often I even have had to defend myself following my diet. After the carrot night, than I think "you see, I have a disease, there is something wrong and it does matter what I eat".

Enhancing the entocort, for sure would help, but is not an option for me, because of the side effect. I thought of consulting my GI doc in NL (by phone), but before I do that, I was wondering what other medications options are there besides entocort?

Also I keep on thinking about Polly, one of our pioneers here, when it comes to curing MC. She had a flare after Rusty died. I remember, polly writing somewhere, since she also thought than it was a stress flare up, to get the stress hormone levels down she enhanced her daily exercise. I haven't tried that out yet. But I was thinking about that too, of trying that out. I just became a member of a great gym here. Good thing is, it is not only a gym but has an amazing outside pool too. So a daily exercise routine of swimming and walking would that help too?

And of course, dealing with the stress. I am afraid to make steps here, to really settle in, looking for a job, looking for activities. A negative voice is telling me "it will never work out" "who is waiting for me here" and see only people that are doing so much better as me (probably they don't just part of the negative voice). It seems like evertyhing I want to do, needs to be perfect, demanding so much of myself, with result I do nothing. Resulting in chasing myself, being angry with myself, and feeding the negative voice even more. At the moment trapped in this circle and getting more disconnected from my inner voice. Sometimes I try and push myself, but doesn't work either.

One positive thing, not for a moment I have had the thought I want to go home to the Netherlands. More like, maybe I have to look for a good GI doc here.

Sorry I can't be more positive at the moment, I think I have a crisis moment here.

[nancyl]

Harma,
What a terrible time you are having and don't knock youself out for feeling sorry for yourself. I tend not to give in and put up a good front myself, but there are times when you just need a good cry. They say it can actually help, and when I did break down and have my good cry I did feel a lot better after. You've got to let it out "in more ways than one". It seems like once the "D" starts there is no stopping it no matter what you eat or don't eat. That's too bad that Entocort doesn't work for you. My doctor has also prescribed Questran, which I have not taken yet. He said it won't stop the diarrhea, but helps to make it more formed and not so watery. Is that something you could try? It does seem like you are going through a lot emotionally and that may be triggering it. I'm pretty new at this so just guessing. I also belong to a gym and walk outside every day. When I was feeling lousy there was no way I could drag myself to the gym, but as soon as I had a good day I was out there doing as much as I could. So I would say the more exercise the better. Have you thought of Yoga or accupuncture? Just some thoughts.

I hope so much that you'll turn this around and feel better soon.

Hugs to you,
Nancy

[Gloria]

Harma,

I'm so sorry that you're having a flare that won't go away. This condition is very frustrating and sometimes mysterious. The only medication I can think of is Loperamide, but that isn't really a cure. At least it would give you some relief. Others here can probably recommend additional medications.

I am still on a diet of (plain) chicken, (plain) fish, rice, bananas, apple sauce and tea.

I'm sure you know that the BRACT diet would never work for me. You might try stopping each of those foods, one at a time, to see if it makes a difference. I would try stopping the fruit altogether for the same reason. Carrots also give me problems - I'm not sure if it's the fructose or simply that I can't eat any root vegetables.

I am at the point where I'm resisting giving up any more foods. I'm feeling like enough is enough, so I can understand if you have the same feelings. We are both down to a very minimal variety that we can eat.

Could it be the water? You're living in a different neighborhood; maybe boiling the water could kill some potentially bad bacteria.

It doesn't sound to me like you are stressing over your decision to live there. I seem to recall that you wrote earlier that you didn't think stress caused you digestive problems. I remember agreeing with you, because I've never noticed a relationship either.

I hope you can resolve this soon. It can be discouraging to not find a reason for the D. Perhaps others will have more insight.

Gloria

[sarkin]

Harma,

I can hear your frustration and exhaustion with this flare from all the way over here. I'm sending you my most healing thoughts and wishes. I wish I could tell you exactly what will work - what's difficult is that each of us is different, but also, what works for us one time doesn't always work another time. Pepto Bismol was very helpful for me, but problematic for others. I will carry that and Imodium when I travel, just in case.

I can now eat fish, but it was "iffy" for me when I was first sick. I believe you're right that you're just so inflamed, it's as though the clock was set back and you have lost some progress you made toward healing. Hopefully that's temporary and you will get it back more quickly this time.

On my worst days, back in March, I had mostly homemade chicken broth. A little bit of chicken. Not even rice or applesauce or bananas - yes, it was boring, but I was so sick I didn't really notice. It was only a day or two, but it turned things around for me. When I felt better I added a little chicken. I added then carrots or potatoes - maybe you would wait on those given your recent experience.

I think stress can contribute, but it sounds as though right now your worst stress is coming from being sick, more than the other way around. I hope you can break the cycle, and soon.

Thinking of you,

Sara

[Kari]

Dear Harma,

Just want you to know that I've been where you are several times since I started my diet treatment plan last July. And you are absolutely right, someone who does not have MC is clueless about what we're going through, and cannot really sympathize. What helped me get through those tough spots was to work on myself psychologically. I would make lists of all the positive things that where happening in my life (for you, such as having accomplished your move), and then start to really focus on those things. Even though I would stick to my plain diet, I would "take a vacation" from my obsessive MC management of trying to figure out what was wrong, because I realized that no matter how perfect and diligent I was, results could not be forced (the MC Monkey would simply jump to another branch:).

Once I managed to get out of my "mental funk", I would regain the energy to pick up my tool chest and get back to trying to figure out why I was still having WD despite eating such a plain, limited diet. Even with the Enterolab and MRT results, I could not figure out the foods I was reacting to, and only recently did I get my system into some kind of stability, and that was after I dropped beef. I think Gloria is right, that there might be something that's giving you trouble in your very limited diet. I have found that what once seemed to be "safe" might not be any longer.

Getting exercise will definitely help, as it will be good for both your mind and your body. For me, I think it has been an anchor of stability throughout this ordeal. It will help take your mind off what's happening with the D. I agree with Nancy, that acupuncture might also help, but I don't know if you can find someone there? I was fortunate to have found a good acupuncturist near me, who specializes in food and airborne allergies, and I feel it has definitely helped the healing process.

So my advise, from my own experience, would be to give yourself a break and try to focus on something other than the WD for the time being. As long as you're not having other debilitating symptoms, you will do just fine, and you have already taken a great first step by venting here. I wish you all the best and hope you'll be able to break the cycle of distress quickly.

Love and hugs,
Kari

[harma]

thank you Gloria, Nancy, Sara and Kari for your words of supports, even that helps already. Gloria, I don't drink tap water here, I only drink water from bottles (even flush my mouth with bottle water after brushing my teeth and make tea of bottle water and cook my rice in it). But it has crossed my mind. Another source of colon infection could be eating out, but I never do eat out. And I know one day I am convinced it is food and the next day it is stress, than both. Quite often it is just thinking out loud. Jumping from one conclusion to the other.

Accupuncture, thanks Kari and Nancy bringing up that suggestion. I know Gabes and Joe have had good experiences with it too. Maybe I will be able to find one here and try it out.

That Pepto Bismul that has crossed my mind in the past, but since it was not available in the Netherlands, I never thought about it again. But maybe here in Jordan it is easy to get. I could give it try.

And of course I will survive on my diet, stick to it. I have actually the idea even banana's are a no at the moment. Sometimes I just have to rant a little. Just get if of my chest.

And a HUGE THANK YOU to you all, for sharing your experiences, knowing you all have been there and there is a way back, that was just the little hope I needed today.

[dgshelton]

Harma - I definitely believe that stress plays a role in my MC/celiac. I have always had WD when really stressed or upset. My Mother's illness and death set off this round. It just didn't go away on it's own this time. Maybe some relaxation/yoga techniques might help? I know swimming relaxes me, so it couldn't hurt to try that. I have eaten applesauce a couple of times lately and it seems to give me WD. I agree with the others that you might need to simplify your diet even more. At least until your tummy settles down a bit.

I'm sending big

[tex]

Harma,

I agree with Gloria. I couldn't eat or drink any citrus fruit or juices when I was reacting. They gave me nausea, vomiting, and D. I believe that she's right about carrots, also. Some of us cannot tolerate them while we're reacting.

I agree with Denise that applesauce could be a problem. I drank apple juice when I was reacting, but I was always afraid to try applesauce, so I don't know if it would have affected me or not. I was concerned about the fiber. Also, apples are high in malic acid, and it's possible that it may not agree with you.

I also agree that stress can play a major role in this disease. I can't say for certain that stress actually caused my problems, but the onset of my symptoms coincided with an extremely stressful period in my life.

I've been thinking about your situation, ever since I read your post several hours ago. I get the impression that you have never actually reached a state of remission. Even though you had reasonably good control of your symptoms, you were not totally symptom-free, suggesting that your intestines have never had a chance to actually heal. When that's the case, a flare can occur from virtually any cause, because your GI system is always in a sensitized condition, close to the threshold at which a reaction can be easily triggered.

IOW, I wonder if something in your regular diet is keeping you from healing. Are you sure that the chicken is not injected with anything to tenderize, or moisturize it? In the U. S. most chicken is injected with phosphate-based solutions, and many people cannot tolerate that. Do you eat applesauce regularly? If so, I would try doing without it for a few days, to see if it makes a difference.

I finally had to cut out bananas, because if I ate more than a small amount, I ran into trouble. I'm not sure if the problem was the fiber, or something else, but it finally dawned on me that I had to be careful about eating them.

Fish are high in histamines. Do you have any allergy symptoms, such as itching skin, a rash, nasal congestion or runny nose, or throat congestion - do you have to clear your throat often? Have you ever checked your pulse after eating? If you are having a histamine reaction to something in your diet, your heart rate should increase noticeably soon after eating.

If you can tolerate Pepto-Bismol, it is effective at bringing remission in about 85% of cases, according to Dr. Fine's research. It is certainly worth a try.

The only other meds that might help, (besides Imodium/Loperamide, Questran, Pepto, etc.), are the drugs based on the generic mesalamine, and the next step is immune system suppressants such as Imuran, or one of the TNF-Inhibitors, but those are pretty potent drugs, and shouldn't be necessary. Prednisone is cheap, and would probably stop the D within a day or so, but as you know, you can't safely take it on a long-term basis. If you think that it might be an infection, a 2-week treatment with Ciprofloxacin will virtually always stop the D, but it will return a few days after the treatment, (unless an infection is actually the cause of the D). Of course, if you had an infection, you should have fever, which you mentioned you did not have.

I wonder if there is a chance that you might have developed a C. diff infection? Do you have pain/cramps? C. diff usually causes fairly severe cramps. In many cases where the D is worse than it has ever been, C. diff is the reason.

Other than that, I can't think of anything else at the moment, but I'll continue to think about this. Maybe someone else will come up with some more ideas.

Tex

[harma]

tex thank you for your long reply and your suggestions. It also crossed my mind that over the last two years (almost) the only thing I had reached was symptom control, never 100% remission. And that has been exactly how it has been feeling over the last years, okay, but not remission. Only what does surprize me than, all the possible things causing my D, were my staples over the years, chicken, carrots, applesauce. Only I do remember last year when I came to Jordan, I was doing so much better the first weeks. First I thought it was coffee or rice milk, but it also could be apple sauce.

The question about chicken, I really have no idea. There is one supermarket where, well I don't think they slaughter the chicken there, but they "prepare" the meat there (don't know how you exactly call it). Knowing this country, how well things are organized (better said not organized) I don't think they add phosphate based solution to it. Actually the last time I bought my chicken there and it had a typical smell, a meat smell. I think that "typical" smell is the normal chicken meat smell.

Fish I haven't been eating the last couple of days. But I do have histamine allergy issues, my nose and take xyzal (something like zyrtec). I have always wondered if there is relation between my food and my nose allergy, but till know now relation has occurred. Anything that smells strong makes me sneeze, from perfume to smoke to cigarettes. With the xyzal it is no problem. I don't notice any difference in my D with (or without) xyzal.

I don't think I have C-diff, I am not really sick, have no fever, also no bloody stools and only real bad d after eating something out of the bract (carrots, pine apple juice, lemon/mint drinks).

From tomorrow I will stick for a couple of days to rice and chicken and tea (we have to eat something) and see what will happen.

again thanks so much for your replies, it means a lot to me. You all are so great!!!!

[tex]

From tomorrow I will stick for a couple of days to rice and chicken and tea (we have to eat something) and see what will happen.

That sounds like a good plan. Please keep us updated on how you're doing. As soon as you start improving, most of the stress and anxiety will be relieved, and that will make you feel even better.

You are most welcome,
Tex

[JoAnn]

Hi Harma, I'm soooo sorry you are having to go through this when you're trying to deal with so many other things. The only thing I can share is my own experience with my last bad flare which was a year ago last Jan. My dr put me on a low dose of prednisone for a week. It stopped the flare in it's tracks. I had a perfect bm the next day. I shifted back to the entocort after that week and eventually tapered off completely that following June. I had been off the entocort when I developed the flare and tried to use it to stop it. For some reason it just wasn't enough to put the brakes on it. (I think it was a combination of a virus and some turkey) but the prednisone put me back on track and the entocort was able to do it's job again. I haven't been able to eat chicken for a long time, but I tried some a couple of weeks ago from a market that claims there are no hormones, chemicals, additives, etc. and I seem to handle it now. I haven't tried it since, but am planning on doing so next weekend. In the past I've reacted no matter how pure it claims to be. I'm hoping I can handle it now. Do you have another meat you can use in case the chicken is causing you problems? Also another thing that soothed my gut is the sweet rice we've talked about in past threads. I put 1 cup of sweet rice with 5 cups of water in my crockpot (slowcooker) and let it cook overnight. It will make a nice gooey, porridge type of rice that is very soothing. I don't know if any of this will help you as we are all different, but I certainly know how terrible it can be to feel out of control with this disease. I'm sending my best positive thoughts to you and that this will soon be over and you can find some stability again. Love JoAnn

[ant]

Dear Harma

So sorry to hear you are still in a flare. I, like you and many, have cried. It is good to cry sometimes.

If you can get hold of and tolerate Pepto B, it may be worth a go. I have stopped a flare a couple of times by tactically using Pepto B for a few days, while still taking my one entocort a day.

My only other thought is..... have you checked your toothpaste for intolerances? Sometimes I just use salt and bottled water to brush my teeth. (I recon with a more or less no sugar diet I can do OK on that).

Here's wishing you a better time ahead....best wishes, ant

[MaggieRedwings]

Morning Gloria,

I really cannot add much to what has already been said/advised but want you to know you are in my thoughts daily and do hope this clears up for you very soon. I would stay away from the applesauce and juice and see how that goes. Please do take care and glad to hear you are still so positive about your new living "space."

Love, Maggie