Flare Symptoms Changed

[cloud9er]

The U.S. healthcare system seems to be headed the same way.

Tex

You guys pay for your healthcare though? How can that possibly go wrong I guess if demand increased more than availability.

[tex]

We have a serious problem with burnout causing a major shortage of doctors and nurses. They're both overworked, because of the way the system operates, and patients face long wait times for appointments, and often poor treatment. U.S. healthcare is the most expensive in the world (based on total expenditure by the government, patients, and insurance).

The last comparison I've seen, which was published in 2021, based on 2019 data, shows that out of 11 developed countries, the U.S. ranked number 11, and the UK ranked number 4. Of course that may depend on who's doing the ranking. And I assume healthcare in both countries has declined in more recent years.

Tex

[cloud9er]

Hi all,

A quick update. More of the same to be honest. I’ve had the worst start to a year I think I’ve ever experienced. I had an early pregnancy loss followed by two deaths in the two weeks following. I am currently struggling with appetite and nausea, more than I ever have before, so much so that I am struggling to eat. I am unfortunately eating processed food which means I’m not losing weight, thank you PCOS. Despite full dose Colesevelam I have been experiencing watery diarrhea, I am wondering what the result would be in stopping it. I may have also caught some sort of virus, maybe. I am trying to get back to exercise but generally trying to take better care of myself with rest. The two days (and weeks technically) that I was pregnant my gastro symptoms improved so that’s something. I’m still taking Vitamin D, magnesium and B12. I tried a pregnancy supplement recommended by my acupuncturist but they may have upset me so I stopped them.

In desperation I have contacted my private gastro again but I think they will say they can’t help me. Still waiting to hear from the NHS. I am torn between potentially going back on Budesonide and altering my hormones for conception or just soldiering through.

Remission is still avoiding me after almost 4 years. June marks the 10 year milestone of start of gastro symptoms!


Amy

[tex]

If you can attain remission by using budesonide, you may have to continue to use a reduced maintenance dose in order to remain in remission. A few of us who have extremely severe cases, have to do that, in addition to making the necessary diet changes.

Tex

[cloud9er]

Hi Tex,

Unfortunately that has been discussed, they don’t want me on it long term being so young. They have decades of experience and apparently saw the effects of young patients with IBD being on long term corticosteroids with osteoporosis etc.

I will speak to them later today but I am feeling ill, I said to my husband I can’t entirely explain it.

Amy

[tex]

Their experience is almost surely with 6 mg of budesonide per day, or even the full dose of 9 mg of budesonide per day, because that's the extent of the published medical research available to them. And they probably remember the draconian side effects of using prednisone for long-term treatments. No medication is going to remain effective for you for very many years before your immune system begins to react to it, and you have to stop using it. That includes the so-called biologicals. There are more than a few members of this discussion forum who have been using low dose budesonide as a maintenance treatment for more than 10 years. By now, some have probably been using it for more than 15 years, with no major problems.

I'm talking about one 3 mg capsule per day or less. Many of those patients have found that they can maintain control by following a restricted diet plus one 3 mg capsule of budesonide every other day, or every third day, etc. A few of them are even able to maintain control using one 3 mg capsule of budesonide every sixth or seventh day, even though without that very small those, they react daily.

What would 10 or 15 years (and possibly longer) without constantly worrying about the proximity of the nearest bathroom during the busiest (and probably most productive) years of your life be worth? The key to preventing bone loss is making sure that you always have a more than adequate level of vitamin D and magnesium available in your bloodstream, so that your digestive system can properly extract and utilize the calcium in your food.

Tex

[cloud9er]

Hi Tex,

My symptoms tend to return when I drop to 6mg though, maybe I need a slightly longer period at full dose then drop to maintenance for a long time. I agree with you though, I hate gastro symptoms especially as they’ve been continuing for so long.

Budesonide always causes problems with my hormones but I will discuss that with gastro in a couple of hours. They may not even let me back on it! The other thing is I think I’m at risk from diabetes as my sister now has it, my maternal grandmother had it and now my mother is close to it.

Do you know of many women who stay on Budesonide whilst pregnant?


Amy

[tex]

Another problem is that published research shows that each time a budesonide treatment is stopped, and then restarted, it becomes less effective, until eventually, after numerous cycles, it loses most of its effectiveness.

Taking a daily antihistamine after dropping the dose of budesonide, seems to help some MC patients to maintain control.

In my experience (and therefore, in my opinion), many cases of diabetes appear to be the result of a chronic magnesium deficiency. I had prediabetes symptoms myself, after my magnesium deficiency became more severe 8 or 10 years ago.

To be honest, I haven't bothered to keep track of whether or not any members here have been taking budesonide while pregnant, although I'm relatively sure that a few of them have. I simply haven't kept track of how many may have done that. Perhaps someone else may recall.

Tex

[cloud9er]

Hi all,

Had my bloods and calprotectin done last week. I’m the closest I think I’ve been to iron deficiency anaemia but apparently that is ok. My iron was at 7 umol/L, iron saturation was 11%, ferritin was well within normal limits as well as T.I.B.C. I’m guessing my miscarriage could be why my iron is almost low. Calprotectin was 85 which isn’t high for me but not optimal. Wasn’t recommended Budesonide. I sometimes get improvement in symptoms during a week or so in my menstrual cycle. Still not one normal bm a day. I’ve been recommended autogenic training as my problems are stress… It has been a difficult few months but I think stress is a trigger not my sole problem. Letting out a big sigh. Hopefully will get pregnant again soon, rather concerned that low iron isn’t great for a pregnancy but I’m guessing the NHS will pick that up in the second trimester.

Picked up another cold and am wiped out again. Praying my condition gets better.
Amy

[cloud9er]

Hello all,

I have been gone a while, not because I have reached remission but because I have been seeing how my pregnancy goes. I am 14 weeks tomorrow I made it! My tummy was quite good in the beginning, then at about 7-8 weeks I suddenly started going more. I’m not sure if a lunch out caused the upset that day (contamination or food poisoning) or whether morning sickness gone south ramped up a couple of notches. I had a small accident on the way home and had to take Imodium to make it on the drive home. On average since the upset I had been going between 3 and 6 times a day. I still don’t have solid bms unless I am on Budesonide, it is either liquid or mushy. Since the decline I have also seen undigested food again. I found Colesevelam sometimes helped with the colour but not to bulk the stool, I had been trying to increase from 4 to 6 a day but won’t take them with supplements at breakfast.

The NHS have been fantastic. I declined the endoscopies they wanted to perform in April as I was pregnant, then two weeks later I had an appointment with a consultant. NHS gastro referred me to a high risk obstetric department and a dietician.

I flared half way through the first trimester (see above), I’ve taken Budesonide (Entocort) from week 12.5 to now. I’m on Budesonide in total for about 12 weeks; 9mg for 8 weeks, 6mg for 4 weeks and 3mg for 2 weeks. I like to wean off too.

I was given a blood test monitor on Friday (because of the Budesonide), testing my blood sugar four times a day for a week. I’ve had a few high blood sugars :( My midwife couldn’t do a blood sugar blood test at my booking in appointment during week 11 because they ran out of blood sugar test vials, so who knows if I had high blood sugars before Budesonide I think I have had too many on and off prescriptions of Budesonide over the years.

Is this the very low risk pregnancy risk that multiple people have told me having MC should be?

Even now I still need to take one Colesevelam with lunch and dinner despite the Budesonide. I’m not having full solid bms yet but give it time, I am going less now. Taking Imodium caused a lot of pressure and pain when the stool and gas moved round.

The NHS are still trying to investigate me for celiac disease despite never having a positive test for it! No genes, no biopsy or blood test has shown evidence for it. I don’t know why they can’t accept that the duodenal inflammation was MC

Anyway, NHS gastro still don’t know what to do with me outside of pregnancy. Earlier blood test results showed slight anaemia (normal for pregnant women), potassium and creatine were slightly low and surprisingly my CRP was 5.7 which is supposed to be 5 or less. I’m waiting to hear blood test and calprotectin results.

I did also see an alternative private gastro who can treat me during pregnancy ( my usual one is not allowed to); they suggested long term Budesonide but also the possibility of a biologic as recommendations after pregnancy. The latter because of my relapse rate using Budesonide and control with diet already. I must admit I am seeing more posts about MC patients trying biologics, I’m guessing that will be a common treatment for steroid dependant MC.

I will update the pregnancy thread with perhaps a copy of this post.

Hopefully I will reach remission for the rest of my pregnancy and beyond!

Hope you are all well :)

Amy x

[tex]

Hi Amy,

Thanks for the update. I don't understand why your doctors are so intent on finding evidence of celiac disease, either. What difference would it make if you were celiac? Absolutely none, the dietary treatment is covered by the diet we are all following, only simpler — avoid only gluten.

Re: Biologics for MC patients, our experience shows that only a relatively small percentage of MC patients respond well to Biologics (less than 30%), and when they do respond, the effectiveness typically only lasts for a few years before most MC patients become allergic to the treatment and have to stop using it. The Microscopic Colitis Foundation published a newsletter discussing the use of Biologics a couple of years ago. For your convenience, here's a link where you can either read or download a copy:

https://www.microscopiccolitisfoundatio ... fcb80f.pdf

And I noticed that recently, new research agrees with our position on this — namely, that Biologics are not nearly as effective for treating microscopic colitis as the manufacturers claim, and as most doctors believe.

I hope your situation continues to improve.

Tex

[cloud9er]

Hi Tex,

Do you have an opinion on the other Crohn’s or UC drugs?

Amy

[tex]

I'm not aware of any new drugs for IBDs other than Biologics. The pharmaceutical companies seem to have arbitrarily decided that Biologics are the future of medicine, so that's where they're putting their research money. The current best bet for treating MC still seems to be budesonide, but it becomes less effective every time a treatment is ended for a while and then restarted. To get the most out of it, a patient has to stay on it (at least a very small dose) indefinitely.

That said, there are several drugs (known as small-molecule drugs) currently in clinical trials that are claimed to be promising. In other words, they seem to be effective, and they avoid the problems associated with the immune system suppressing effects of biologics.

Tex

[tex]

In case your doctors are not familiar with these treatment options (small molecule drugs), here's a link to a US National Institutes Of Health article that discusses their characteristics:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308576/

Tex