Flare Symptoms Changed

[Gabes-Apg]

Amy

prior to my MC diagnosis aged 40, I had had lifelong instances chronic pain in pelvic area.
as a teenager and young adult, there were multiple times I was hospitalised with the pain, nausea, fatigue.
Once they put me on a drip and I rested, it resolved.
I had numerous X-rays, scans, appointments with gyno's etc and they could not identify the issue and called it 'growing pains'
in my mid 20's when I was consulting with gyno about it, they decided to do exploratory laproscope to investigate and found my bowel entangled in my appendix and vast amount of adhesions on my bowel (that was my first gut obstruction surgery)

I know now it is was cramping of the bowel. which does not show up on any scan or mainstream test.
this is a common issue I have seen with others here on the board. It can be worse when hormone cycles happen
For me the pain was equivalent to child birth pain

This issue resolved once I got on the low inflammation eating plan/ lifestyle and fixed Vit D3 and magnesium deficiency
The only time it has occurred in the past 13 years since I made the diet and lifestyle adjustments is when I was majorly overtired after a 4 week trip to France for work. I was run down, been off my safe eating plan for a few weeks etc

as we have previously discussed, making these changes is easier said than done. Albeit, pain is your body telling you that it is inflamed.

[cloud9er]

Hi all,

Quick question, I’m being confirmed in church on Sunday and will be expected to take communion. The only problem is the wafers are gluten free wheat starch! I’m freaking out! We’re not supposed to have wheat are we?! The wafers are approved by Coeliac UK but still…

Kind Regards,

Amy

[tex]

If they're approved by celiac UK, They should be safe, although I don't understand how wheat starch could be gluten-free.

Tex

[cloud9er]

Hi all,

I will never have one of those wafers again, think it caused horrible nausea! Not sure why the church has to give wheat.

Anyway, my symptoms have been consistently getting worse :( I feel I’m pretty much back to square one I have a gastro appointment on Thursday so hopefully they will help!!

I stumbled across CVID (common variable immunodeficiency) in my research of pathology. I seem to have a few of the symptoms including lymphoid hyperplasia in earlier colonoscopies. Although my biopsies have contained plasma cells. My immunoglobulins were tested in 2021 and were found to be normal. I had even taken Budesonide months before the blood test which would lower the levels. I also don’t have any evidence of infections in the gut. The only infections that I’ve had since symptoms began are the traveller’s diarrhea, possibly food poisoning from a barbecue month later, both 2014; colds; ear and UTI in 2019; covid three times and potential flu this year. I used to not get ill when I was younger.

Anyway, will update after the consultation with the gastro.

Kind Regards,

Amy

[cloud9er]

Hi,

The consultation was a bit strange, completely different to my usual gastro. They are suggesting I wait until my NHS appointment in October for any further tests. They can ask the GP to prescribe a pill form of a bile acid sequestrant and/or Budesonide. Though the latter is not good long term. His recommendation is actually for a biologic Vedolizumab or Adalimumab (I think) on the NHS, the former is not approved for funding for MC.
Bit dismissive to be honest. They said it would be fine for me to conceive and the bigger risk is conceiving when middle aged and actually recommended getting on with it Even women with mild Crohn’s and UC are usually fine getting pregnant outside of a big flare, they thought

Not sure what else to say! A bit stunned.

Edit: I don’t think any gastro wants to treat me


Kind Regards,

Amy

[tex]

Here's the basic problem(in my opinion):

From the medical viewpoint — MC is just a nuisance disease, because it's not normally fatal, and it doesn't usually require surgery.

From the patient's viewpoint — MC can be just as life-changing, and debilitating as Crohn's disease, or ulcerative colitis.

Before agreeing to try a biological treatment, you might benefit by reading a copy of the newsletter published by the Microscopic Colitis Foundation, regarding biological treatments. You can download or read a copy at the following link:

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

I don’t think any gastro wants to treat me

I'm afraid that comment is right on target, and I believe it applies to many of us, possibly most of us. Our gastroenterologists actually have a very poor understanding of microscopic colitis. You probably know a lot more about living with this disease than any of your doctors. After gastroenterologists gain a little experience trying to treat patients with MC, and they discover that they are unable to successfully treat many cases, they tend to become frustrated, and don't look forward to appointments with MC patients. Medical specialists are supposed to be experts, and so failures are quite demoralizing for them. And whether they realize it or not, it's probably embarrassing for them to be charging so much for their services, when they're unqualified to provide help for the patient.

But as I pointed out upfront, this is just my opinion.

Tex

[Gabes-Apg]

Sadly, the health system in most countries are not equipped to assist patients with these sort of health issues.

as tex said -
From the medical viewpoint — MC is just a nuisance disease, because it's not normally fatal, and it doesn't usually require surgery.
From the patient's viewpoint — MC can be just as life-changing, and debilitating as Crohn's disease, or ulcerative colitis.

That is why this forum is here, has been here for near 20 years helping people get wellness, live a life with minimal symptoms.

as I have mentioned within the past month, you have to take the reigns and own the management of your health.
there is no easy solution that will come from doctors / specialists

[cloud9er]

Thank you both,

The next treatment seems to be biologics. I’m concerned about them, especially during pregnancy.

I wonder if the best option is to just get pregnant and see if my body goes in to remission, but it’s a big risk for poor potential baby and I would feel selfish especially if they were to develop a problem.

When I think about this more logically waiting until October and beyond for tests will put me back in cold/flu season which I usually suffer with, it’s put me back a few times in the last couple of years.

A combination of colvestran and Budesonide might be my best chance. The vitamin issue is worrying me though with the colesevelam though. I will need the fat soluble vitamins, especially folic acid, for baby. The gastro sounded like he was letting me take the Budesonide without instruction, I’m not sure how much my GP will be able to advise me there.

I at least hope this conversation is helpful for other MC women that would like to have a baby.

Edit: I still have some elemental 028 drinks. I also have some Pentasa left which helped a bit previously.

Edit again: I wonder if I’m not as bad as I think, I’m not experiencing fatigue so much anymore. I’ve been using more topical magnesium. I tried Pentasa, it could be a placebo effect but I already feel an improvement. Although my itchy hives returned on my wrist I’m avoiding corn, pork and limiting tea now also.

Stuck between a rock and a hard place,

Amy

[Gabes-Apg]

An article that may interest you about a recent study

https://www.miragenews.com/how-inflamma ... t-1031224/

[cloud9er]

Hi all,

I’ve spoken to my GP, they are prescribing the Colesevelam and two month’s Entocort which I will pick up next week. They have also allowed me to get my blood checked.

My nausea and loss of appetite are as bad as ever, I’ve started to eat jelly to help get some nutrients in me. I’ve had head and neck pain today so that’s probably another cold/virus. My Grandmother died this week so I think that’s made my tummy worse.

The next gastro step will be to check that I don’t have small bowel Crohns, if the NHS want to do that in October. If I get desperate we may fund it ourselves. As I said biologics will be the next step unless the medication above works and I get pregnant.

Thanks Gabes for the link, inflammation is not good for embryos.

Edit: I still have Elemental 028 left that I’m tempted to try again. I think Pentasa has helped.

Second edit: I’ve booked a capsule endoscopy just to make sure there isn’t Crohn’s before attempting a pregnancy. For my own peace of mind if nothing else. The NHS procedure would probably be in the new year. I was in Scotland at the weekend and my bms were liquid with bits of food, back to nocturnal bms that kept me up (think the water is an issue!). Since taking an Imodium yesterday lunchtime I have been twice only). Will start Colesevelam now.

Kind Regards,

Amy

[cloud9er]

How long should it take bile acid sequestrants to work please?

Kind Regards,

Amy

[tex]

Hi Amy,

It takes a little while for the effects of a dose, or a dose change, to stabilize. It normally takes approximately a fortnight (two weeks) for the effects to generally stabilize, although it probably won't take that long to be able to tell roughly how it's likely going to settle out. But because it takes so long for the effects to stabilize, it sometimes requires months of experimentation, in order to figure out exactly what your dose needs to be, unless you're lucky, and the starting dose works.

I hope this helps.

Tex

[cloud9er]

Bms are starting to form!!

Still seeing undigested food all the time but Budesonide should sort that.

Edit: my tummy is rather inconsistent atm after this initial post. Sometimes I will have almost perfect bms only a couple of times a day (with undigested food though), other times I have urgent liquid bms with sediment through the day and night Yesterday was one such day, I had 2-3 solid used to be my perfect bms (perhaps felt a little constipated, although my current normal isn’t normal anyway), then in the evening and in the night I had urgent liquid bms Albeit I had some wine. I keep having to take Imodium every week or two for convenience. I keep seeing rice crispy bits in my bms. I’m wondering if I’m still eating a problem food, a staple. It could be rice! Been there since early food reintroduction. Maybe grains as a whole The nausea and loss of appetite are so bad daily still.
I’m hoping I might receive results from the capsule endoscopy this week or next.


Kind Regards,

Amy

[tex]

It might, because the undigested food Indicates that your intestines are still inflamed. Budesonide will suppress some of the inflammation, and it will also improve bile acid uptake in the terminal ileum, which should help to remove any remaining bile that the Colesevelam hasn't sequestered.

Tex

[cloud9er]

Hey all,

I’m pleased to say that my capsule endoscopy was normal, which is a relief! I’ve stumbled across a problem taking both Colesevelam and Budesonide! I can’t take colesevelam with breakfast because of medication not absorbing within four hours, so delay until lunch. I’ve been given the green light to conceive by this new gastro. They don’t think I’ll need to be seen during pregnancy and the plan won’t change now anyway. We are seeking advice with an obstetrician again.

I’m going about twice a day, normal colour and mostly solid. I’m still seeing undigested food, as well as struggling with appetite. Budesonide usually makes me ravenous. I’m really hoping it continues to work as it didn’t last year, but did in March.

I’m on the highest dose of colesevelam by the way.


Kind Regards,

Amy