General questions regarding cc

[lindsaydltn]

I was recently diagnosed with collagenous colitis last summer. I had symptoms for 4 years prior to diagnosis . I’m now on my 2nd round of Budesonide. The first round was for 4 months. I have a few questions if anyone can help. There is no clear and consistent answers online

Is it common to gain weight from budesonide?

Have any of you gone into remission of symptoms from it?

Have any of you tried accupunture for cc?

Thanks!
Lindsay

[tex]

Hi Lindsay,

Welcome to the group.

Is it common to gain weight from budesonide?

Yes

Have any of you gone into remission of symptoms from it?

Yes, but published research shows that 85 % of MC patients relapse after their treatment with budesonide is ended (if their diet hasn't been corrected).

Have any of you tried accupunture for cc?

At least several have. A search of the archives using the proper keywords should locate some of these past posts.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Arleeda]

I have had microcolitis for probably 5 years now, but didn't go for diagnosis until a year after symptoms appeared. I was on daily Imodium for a year before I told my PCR, who sent me for colonoscopy. I got the diagnosis, but after the colonoscopy I started having real pain in my LLQ and a CT scan showed I had an intestinal hernia. I went for hernia repair and felt great for several months, but I still had MC. The MD prescribed budesonide first, that was great, the best and most normal I have ever felt. But she said I couldn't continue that. One week off, MC had returned. Then she prescribed colestipol, which also worked pretty well. Taking it every day got to be constipating, so now I do every three days, which is hard to remember! Stool samples sent to Enterolab showed no food sensitivities, but I did try gluten free for six months and it didn't do anything. What I have noticed is a pronounced sensitivity to salad greens and raw tomatoes. They just seem to run right through me without changing, so I don't eat them anymore, although that doesn't seem healthy. I still have diarrhea even when I cut those out, but it isn't full of leaves and tomato skins! I try to remember my colestipol schedule; it is on my calendar but I rarely look at it at night when I am putting out the pills! I am in my mid-80s and memory isn't as good as I sometimes think it is.

My microcolitis first appeared following a trip to Central America, so I thought then it was Montezuma's revenge. I also was taking Prevacid for heartburn. I've since learned that heartburn drugs cause colitis--but does the colitis continue once the drugs are stopped? I went on diet and lost about 20 lbs and the heartburn went away, as did need for Prevacid, but the colitis stayed with me. I also was tested for intestinal bacteria and there were none. So here I am trying to titrate my colestipol dosage with my daily stool consistency. I have also had reoccurrence of my LLQ hernia, apparently the first operation was not as successful as it seemed to be for 3 months. I will get a different surgeon next time! Now that I have my COVID10 vaccinations, I feel safe enough to go to hospital. I don't know if anyone in my family had this, it isn't something they would have discussed back then.

[tex]

Hi Arleeda,

Welcome to the group. I'll try to answer your question, and make a suggestion about the colestipol:

but does the colitis continue once the drugs are stopped?

Yes, usually, especially if the medication is not stopped soon enough.

Regarding taking colestipol every third day: I don't know how the product you're using is packaged, but if you could split the dose into thirds, and take one-third dose every day, you would get much better control, and remembering to take it would be much easier. Some of these products come in bulk packaging, and that would be easy to divide.

Again, welcome aboard, and I hope you'll be able to find some solutions here.

Tex

[Arleeda]

I am scheduled for an LLQ hernia repair next Monday-I assume it is unrelated to my MC. Since my BP is so high (190/90 by the MD's measurement; more in the 160:80 by home measurement), the surgeon said I should take BP med and to consult my PCP. He prescribed amlodipine 5 mg. It lowered BP, but also severe early morning diarrhea returned in spite of the every other day of colestipol that had been working well for many months. Could the amlodipine be related to this? Since I need the surgery to relieve sometimes horrible pain in the LLQ I am going to return to Imodium and hope that works. No way I can show up for a 5:30 a.m. surgery in my present condition! I have sent emails to both MDs. But wondered if you knew of anyone else who had problems with BP meds and microcolitis.

[tex]

I'm not familiar with amlodipine, but hypertension is a frequent side effect of budesonide. Otherwise, I'm not aware that anyone's MC is directly associated with high blood pressure. Hypertension is a common side effect of chronic magnesium deficiency, however, and MC depletes magnesium. So MC can cause hypertension by that route. I had an episode several years ago when my magnesium level became quite low due to taking an antibiotic, Bactrim, for some dental work. As a result, my blood pressure was regularly in the range you mentioned. After I figured out that I was magnesium deficient, and doubled my daily supplemental magnesium dose, the hypertension quickly faded away.

Regarding the magnesium deficiency, I even went to the emergency room. Luckily, I noticed in their blood test results (online, the next day ) that my magnesium was flagged as low. The ER doctors completely overlooked the magnesium deficiency, and told me that all my blood test results were fine, and sent me home. Over the years, my experience has been that doctors in general completely and consistently overlook magnesium deficiencies. Apparently they're not trained to recognize them. That's probably the main reason why at least 70 % of the general population is magnesium deficient.

Tex