I Want My Life Back…. Again.

[Harmony33]

Hello All,

I have been back in a full flare for about a month, with increasing symptoms for about two months. Thanks to all of you, I know exactly what to do! Except it is not working this time.

For history, I was diagnosed in December of 2018 and went into remission with Budesonide and diet changes. Since then, with a few short exceptions, I only have had D about once a week, but I could always guess why. Either too much fiber or too many histamines the day before. I assumed “my bad” and moved on. I usually had issues in May, assumed allergies/histamines and added an antihistamine which put me back to “normal” in about a week.

Every time someone feels bad for me because I can’t go out and eat with them, or eat “normally,” I say something like, “Oh well, everyone deals with some health issues. At least, mine is not cancer.” And drop the subject. I had accepted that due to the Phase 2 diet, I could actually eat about 40 foods instead of the initial four foods, and life was as good as it could be with MC. This forum taught me to try to relax and count my blessings.

But this time, I can’t turn it around. If anything, I seem to be getting worse each day. I’ve considered Budesonide but it gave me Intracranial Hypertension (diagnosed by an ENT Doc after lots of tests) and it continues to this day, so I don’t want to even chance a worse side effect.

I’m not asking for advice, I know just what to do. I’m just discouraged that it is taking so long. And I am stuck at home again. And I want my life back… again.

I just wanted to vent with people who know exactly where I am right now. Thanks for listening.

[tex]

Without the option of taking budesonide, it's probably going to take longer to reach remission this time. Also, consider the possibility that the flare may have been caused by a new food sensitivity, that you may need to avoid. Or your diet might have somehow become cross contaminated. In other words if you seem to be getting worse, that suggests that something you're eating (or drinking) every day could be the problem.

I hope this helps.

Tex

[Harmony33]

Thanks for your support Tex,

I have removed suspected foods, one by one, hoping I could figure out what food that used to be safe ove the past three years is now triggering a reaction. For the past two days, everything I eat causes a reaction, even after Imodium (so I could leave the house.) If I don’t figure it out soon, I might test at Enterolab again.

Harmony

[tex]

Is the pain worse than normal? Or are there any new symptoms, such as bleeding? I'm wondering if you might have a C. diff infection? If it were a stomach bog going around, it should have cleared up by itself, after a few days.

Tex

[Harmony33]

Hello again,

No new symptoms beyond WD after every meal instead of mornings about an hour after the first meal of the day. I just tried eliminating almond butter/almond flour, and had a better day today, so fingers crossed that could be the new intolerance.

Thank you for your support Tex. You are very kind and generous with your time and expertise.

Harmony

[Harmony33]

I am confused. The two days just before I decided to “share the flare” with our forum last week had been awful. Then, the next four days after posting were so good I thought I’d solved it with diet changes and that I had finally figured out the new intolerance.

Then I had two days of terrible GI pain. (I know this can be a symptom of MC, but I had only personally experienced it once, right between when I had a colonoscopy and the actual visit to hear the MC diagnosis. It was New Year’s weekend 2018 and the GI Doc was not answering the phone, so I went to the ER, who found evidence of pseudomonas aeruginosa, for which I took antibiotics for two weeks, then probiotics to avoid C-Diff, then my first course of Budesonide.)

Tex asked me about any pain in this thread about a week ago, so this seems like a clue.

The past few days, I have alternated between good and bad days. I can’t actually remember the last time Norman visited. I guess I need help. I can’t get into the GI Doc as I hadn’t been there since 2019, so they want a new referral. Whatever

I can see my PC Doc this Friday. He is a kind and caring Physician with much experience In other autoimmune diseases (though little experience with MC) and he is fully supportive of diet changes to manage any autoimmune condition.

So, what do you think the new GI pain is telling me? Should I ask for a stool test for pathogens? Any advice is welcomed.

Thanks,
Harmony

[tex]

Infections typically have consistent symptoms, that is, they cause similar symptoms every day. Good and bad days are somewhat common in many MC cases. I had that issue, for example, when my disease was active.

Now that you have an MC diagnosis on your record, you don't need a G.I. doc, unless you want his or her advice (and most gastroenterologists don't know much about treating MC, anyway), so your PC Doctor can probably provide any help that you might want. If you decide that you might want some stool tests to check for a possible infection, for example, your PC Doctor can order any of those tests that you might need. And if you want to try budesonide, for example, your PC doc should be able to prescribe that, provided that your G.I. doc initially prescribed it, so that it's on your record.

I've forgotten how long you were in remission before this flare began, but if it was a year or more, you should be able to get back to remission and stay there. If you're remission didn't last very long, initially,it's possible that you might be one of those uncommon cases that require a small Budesonide maintenance dose in order to remain in remission. Some of those patients are able to get by with a 3 mg capsule every day, every other day, every third day, or once a week, etc.

I hope this helps,

Tex

[Harmony33]

Thank you Tex,

Good point, it is very logical that my symptoms would be more consistent if it were due to an infection. I’ll continue to slowly manage this flare with minimal diet choices.

As to your question about remission, I choose to believe that I have been in remission for three years. That doesn't mean symptom-free, but manageable. I knew what I could and could not eat. I usually had a “one and done” WD reaction about once a week, but I chalked it up to cross contamination, too much fiber or histamines. If I didn't react within an hour after breakfast, I was usually good to go out all day without worries. Every May I would have a bad week where I reacted all day/night, but I could add an antihistamine to my D3, B12 and magnesium lotion and turn it around in a few days.

I need to keep this all in perspective. I’ve realized that am not as sick as when I was diagnosed. I don’t have brain fog or body aches or total exhaustion this time, so I must not be quite as inflamed as originally. I’ve lost five pounds this time, not fifteen. After the GI pain settled, the past few days have been back to morning reactions, so perhaps I am healing a bit. Slowly, but healing again. I need to be patient. What a frustrating disease, because we still have to eat, though I’ve gotten through a few meetings by fasting until after.

Thank you for your patient support and analytical review Tex. I appreciate you.

Harmony

[tex]

And I appreciate you, because as is often pointed out, we learn by sharing experiences.

Tex

[Harmony33]

Hello All,

I am finally back to normal…. Well, MC normal anyway. I still monitor my food, and don’t eat out, but I can leave the house without much worry.

No miracles, but I do have my life back. I thank all of you in this forum as I read it every day for tips and knowledge. I have learned so much from each of you during your struggles. I knew what I had to do—again—but this time it took three months.

I did see my very kind PCP in July to get labs to rule out whether the flare was caused by a bacteria. All was clear.

My PCP knew that I did not want to go back to my original GI Doc, and they would not allow me to see another GI doc within their practice, so he recommended another GI Doc in a small town about an hour from me—in Santa Maria, California. I went to see him, even though I was already better, just to be in their system from the referral. I was actually impressed. I will post his name on the recommended GI Doctor thread, but I was pleasantly surprised that he believes that diet can control MC!

He actually suggested several concepts that I had already learned from our forum:
Strictly gluten free
Avoiding processed foods as many of the minor ingredients can create intolerances
Considering an elimination diet to find intolerances. (He uses a six week FODMAP diet as a starting point)
Understanding that this is a chronic condition, but finding management techniques help us live as normal a life as possible

He said that Budesonide helps about 50% of patients to go into long term remission. However, if this does not happen, he suggests minimal over the counter meds and a careful diet to get/keep it in control.

He actually complimented me on my three years of managing MC as a chronic condition.

Harmony

[tex]

Thanks for the update, and many thanks for the doctor recommendation.

I hope you continue to improve.

Tex