an update on my MC journey

[suzieq]

Hi all,

It's been a while since I last posted, I'll try to keep this brief. I was diagnosed with MC in 2011, I keep an egg, casein, gluten & soy free diet. For 11 years and up until March 2022 I kept my many flares under control with budesonide but the medication was becoming less effective, and I have documented vision problems because of taking it. I should add that I was never able to get my MC under control thru diet. In April 2022 I started Entyvio infusions, the maintenance being an infusion every 8 weeks. I was in remission for 6 months then in December I had a 3-week flare that subsided on its own, in February a 2-week flare that subsided on its own, and on May 5th, the worst flare I ever started and I'm still dealing with it. I saw the PA and all my blood tests were normal and so was the stool sample except it showed inflammation. I saw the PA on 5-22 and was prescribed colestipol to take in addition to the Entyvio infusions. I must have fallen through the cracks at the Drs office, I'm still waiting on the prescription for the colestipol, prior authorization is needed, and the PA is out and she's the only one that can sign the order. I've called but I just have to wait. I have 7-year-old colestipol left from the last time I took it, I'm tempted to take it now. I have cholestyramine left from a previous prescription that's still good, I stopped taking it because it has NutraSweet in it and I know not to take artificial sweeteners plus it never helped me. So, should I take the expired colestipol that I have on hand until I get the prescription?

I've lost a bit of weight, I'm watching everything I eat, and I take Imodium when I need to leave the house. I've also had to drink a lot of Pedialyte. I'm having a problem with dehydration, leg cramps and low blood pressure. I blame these 3 flares on stress. I can pinpoint stressful events to when the flare started. It's a stress in the family that has become an impossible situation but I won't bore you with that. I think stress is the reason why I was never able to get the MC under control with diet. I don't deal with it well. I'm trying some self-help ideas: tai chi breathing, meditation and I plan to start a journal to document the stressful events. When I'm feeling better I hope to exercise more.

So that's my story. Thanks for listening.

Thanks,
Susanne

[Marcia K]

Hi, Susanne. Thank you for the update. Family stress is the worst because it comes from family. No advice, but I hope you are able to regain some type of normalcy soon.

[tex]

Hello Suzanne,

I agree with you that stress is probably the main issue that's causing your flares. Stress is the one problem that can foil our best laid plans. I wish I could tell you how to prevent it from dominating your health, but unfortunately, I can't.

Regarding the old cholestyramine that you have, published research shows that properly stored medications are usually still effective after 30 or 40 years, or more. The problem of course, is the NutraSweet, that you've pointed out. I have no idea whether the cholestyramine would be effective, with that ingredient. I hope you can find a way to resolve your problem. This disease is unpleasant enough, without the added problems.

Tex

[sonja]

Hi Suzanne,
Thank you for your update. It helps to hear your experience and to realize that we are not alone in our struggle to manage with this disease. I have no advice, but sent you good luck and love,
Sonja

[suzieq]

Hi Tex, Marcia & Sonja,

Thank you for your replies & good wishes. I'm still the same, the flare hasn't let up. In fact, the flare has been so different from any of the previous ones. I still haven't gotten my colestipol prescription, now the pharmacy says they are out of stock. I've starting taking the 7 year old Colestipol I have from the last time it was prescribed, I hope it helps soon. I'm having difficulty taking Imodium. It works in stopping the diarrhea but when it's wearing off I get pain on my left side, waist high, trouble passing gas and stools at first but when it calms down a little, all hell breaks loose again. After all of this, when I saw the PA back on 5-22, she ordered the bloodwork & stool test but she NEVER examined me, never felt my abdomen. In fact the 6-7 times that I saw her, she never examined me. Today I had a scheduled 6 month visit with my PC, I mentioned that to him, he gave me a look like he found that hard to believe but he included that in his exam today. Wish me luck with the Colestipol.

Thanks again,
Susanne

[Marcia K]

Sorry to hear that you're still suffering. I hope you find relief with the Colestipol & it available to you soon! Take care!