Flare Symptoms Changed

[cloud9er]

Do you think I might be ready to reintroduce beef or lamb in the form of bone broth? Is the broth still considered as eating red meat?? Then eventually the meat themselves.

I would love to try introducing eggs too ?!

Edit: maybe eventually onions and herbs to make stocks that I used to love

Kind Regards,

Amy

[tex]

Amy,

This is just my opinion, but if you're still passing pieces of undigested food, either you're not chewing your food before swallowing it, or most likely, your intestines are still highly inflamed. A capsule endoscopic procedure reveals absolutely nothing regarding microscopic colitis, It simply rules out other issues, but other issues are virtually never causing problems when MC is active, anyway. Gastroenterologists are always trying to find an excuse why their prescribed treatment isn't working to control MC. Obviously it isn't working because they simply don't understand how to treat MC. The status of MC (cellular histology) requires a microscope, and regaining normal cellular histology, after MC is diagnosed, requires a number of consecutive years of stable remission.

In other words, based on the experiences of most members here, you are nowhere near a stage of adequate healing where experimenting with attempting to introduce new foods would be indicated. Our digestive system needs to be working more normally, before we can begin to introduce new foods, and that requires some healing time, after remission is achieved. If you're considering proceeding with starting a family, please don't rock the boat with your diet, because you will soon have enough issues associated with becoming a mother, to keep you more than adequately occupied.

Allow your digestive system some time to heal. Again, this is just my opinion.

Tex

[cloud9er]

I get so bloated with Budesonide! I think I’m seeing less food.

Has anyone else tried budesonide with a bile acid sequestrant? It may seem a bit overkill but I wonder if they help each other and in patients that relapse after weaning, they could try both to see if it works before moving on to stronger drugs

I’ve spoken to a doctor tonight, who specialises in women with rare or chronic diseases before and throughout pregnancy. They are advising I start medication to stabilise my MC before conceiving. They mentioned Anti-TNFs I think Humira, as well as Azathioprine (Imuran), the latter being her preferred route first. That means going back to the gastro who was very dismissive and didn’t want to see me again If he doesn’t want to prescribe those treatments I guess I will wait for the NHS appointment in October.

I think because I’ve seen this doctor privately, the NHS shouldn’t dismiss me as only having MC; so I hope this helps fellow MC ladies in the UK, especially my local area around London.

Furthermore this doctor thought IVF shouldn’t be ruled out because of concern for a flare (if IVF is needed). They weren’t concerned about my age and how many children would like. Not every woman is lucky being older though imo.

Sorry for another long post! Trying to pass on medical wisdom. I am feeling a lot better actually, going twice a day with near normal bms (less undigested food!). I’m trying to run again, it is making me slightly more loose maybe. The doctor basically wants me stable for longer without steroid treatment before conceiving. Nutrition was a big worry for them and I didn’t even detail how restrictive my diet is.

Kind Regards,

Amy

[tex]

I don't recall anyone who has tried that, but that doesn't mean that someone here hasn't done it. I don't see anything wrong with it, as long as you take the budesonide at least an hour or two before you take any bile acid sequestrant. if you take them at the same time, too close together, or take the bile acid sequestrant within 4 to 6 hours before you take the budesonide, the bile acid sequestrant will cause the budesonide (or any other medications)to lose some of its effectiveness.

As long as you're careful about when you take them, they should work fine, because part of the reason why budesonide helps to stop diarrhea is because it enhances bile acid reuptake in the terminal ileum, and that helps to remove some of the bile, also. Of course it's main function is to suppress inflammation by suppressing mast cell activation.

At least those are my thoughts.

Tex

[cloud9er]

I’m still struggling with nausea and loss of appetite or altered appetite, I’m not sure why! Budesonide usually makes me ravenous. I’m seeing mucus in my stool too, not sure if that is because stools are bulky and scraping through now?
I’ve noticed that sometimes when I eat and feel nauseous, I have a coughing fit. This may be related to corn. Another oddity!

I have stopped rice altogether. I tried reintroducing yesterday and felt nauseous after. I don’t think either grain is good for me currently.

Ideally I want to change off of cereal and on to eggs and (maybe bacon) and a smoothie. Cereal is so quick and convenient though.

Kind Regards,

Amy

[tex]

The mucus is a sign of severe intestinal inflammation. The cells in the epithelia of the intestines secrete mucus in an effort to protect themselves from what they perceive as a toxic fecal stream. Apparently, your MC is fully active.

Many of us are sensitive to corn. That's uncommon, but not rare. I was sensitive to corn before I was able to achieve remission.

Most cereals are fermented with barley malt during processing in order to make them taste sweeter. Unless you're buying cereal that's certified to be gluten-free, you're probably eating gluten every morning, and that's why your MC is fully active.

I may be barking up the wrong tree, but check that label, and if it shows barley malt, you're eating gluten whenever you eat that cereal.

Tex

[cloud9er]

It’s Nestle’s gluten free rice pops or cornflakes! I must be eating something daily that with this flare is upsetting me, or food isn’t my problem. I might try the elimination diet again. Fibre is causing a problem I think, so I’ve been avoiding it almost entirely. Unless the opposite is true?

Kind Regards,

Amy

[tex]

Maybe you're one of the few members here who are sensitive to rice. Have you ever ordered the Enterolab stool tests to pinpoint your food sensitivities? Those test results eliminate all the guesswork. Unfortunately, it's unlikely that your health care system would be willing to pay for them, since the laboratory is located in Texas, and they don't have any overseas labs.

Tex

[cloud9er]

Hello everyone,

Sorry for the delay! The test kit was delayed in getting to me at customs and then I took around a month to finally get it sent. I have just received the results this morning, so that was a quick turnaround by EnteroLab! I will say that I am very lucky with the results:

Fecal Anti-gliadin IgA 23 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 15 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 8 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 8 Units (Normal Range is less than 10 Units)


Mean Value 11 Antigenic Foods 13 Units (Normal Range is less than 10 Units)

Food to which there was no significant immunological reactivity:

Beef Chicken Pork Tuna Almond Walnut Cashew White potato

Food to which there was some immunological reactivity (1+):
Rice

Food to which there was moderate immunological reactivity (2+):
Corn

Food to which there was significant and/or the most immunological reactivity (3+):
Oat

Grain toward which you displayed the most immunologic reactivity: Oat Grain toward which you displayed intermediate immunologic reactivity: Corn Grain toward which you displayed the least immunologic reactivity: Rice


I am a bit confused regarding rice as I removed it from my diet a few or more months ago and saw improvement. In fact I switched to corn. Almond and cashews gave me painful cramping. I was hoping to try oats soon, never mind

Note: My IgA levels were tested on 4th May and came back as normal at 1.20 g/L .

Thanks,

Amy

From September 2021 on ‘Help with nearly reaching full remission please?’

[tex]

Thanks, and sorry that I forgot, apparently this thread is longer than my memory. Of course it's possible that something may have changed, in almost 2 years, but I agree with you, those results are not very bad compared with most of our results. It makes me wonder if we're overlooking some other major problem, such as bile acid malabsorption (BAM). Research shows that 40% of diarrhea cases that are refractive to conventional treatment, are caused by bile acid malabsorption. I apologize if we're traversing a part of your journey that we've previously covered, but as I mentioned, as severe as your inflammation appears to be, we must be overlooking something.

Tex

[cloud9er]

I am taking a full dose of a bile acid sequestrant.

I’ve reduced down to one bm now, maybe things are backing up and causing nausea.


Kind Regards,

Amy

[tex]

The problem is, the full dose doesn't work for many of us, especially those with severe cases. The correct dose has to be determined experimentally. And you may need to take Betaine HCl and digestive enzymes. We have one member, for example, who works in a hospital, who uses eight packets of Colestyramine daily, in order to remain in remission. But apparently, as long as she takes that dose, she can eat anything. Please read the posts by Laine (HockeyMom) at the following links:

viewtopic.php?p=209053&hilit=cholestyramine#p209053

viewtopic.php?p=209901&hilit=cholestyramine#p209901

viewtopic.php?p=209905&hilit=cholestyramine#p209905

Let's get your symptoms resolved, so that you can get on with your life.

Tex

[cloud9er]

Things ramped up a notch yesterday lunchtime before I started making lunch. I suddenly felt very nauseous, fatigue hit me and general feel ill, I lost my appetite and went home to rest. This is whilst taking steroids!! I have mostly slept since then, almost 24 hours later. I still feel the same and can barely eat, I might force myself to eat soon. I’ll try a fresh ginger tea.

Could this be a liver issue? Any pain is mild.

Help!

Edit: I found these symptoms listed on the NHS website for Entocort:

‘feeling or being sick (nausea or vomiting), very bad dizziness or passing out, muscle weakness, feeling very tired, mood changes, loss of appetite and weight loss – these can be signs of adrenal gland problems’

It says these are serious side effects and to call a doctor or 111

Kind Regards,

Amy

[tex]

Taking budesonide for a long time can indeed cause those symptoms, because of adrenal problems.

Tex

[cloud9er]

My GP didn’t seem concerned, waiting to hear from the gastro. I wonder if it was a bit of a blockage, my bm was rather large. Might drop the colesevelam dose as perhaps the Budesonide is working on its own.

I’m not usually dramatic sorry!


Kind Regards,

Amy