Flare Symptoms Changed

[Gabes-Apg]

Amy
the supplement levels in the drinks would be based on daily requirements.
those daily requirements are based on healthy people with no health issues.

In my 12 + years in being part of this group, hundreds of people with complex multiple issues like yourself, Good levels of Vit D is a foundation of healing and getting better.

have you had a Vit D test in the past 6 months?

[cloud9er]

Hi Gabes,

My last blood test for vitamin D and b12 was January 2021, both found to be mildly deficient. I had a full blood count, electrolytes, liver function and esr plus virus/bacteria in June this year. My liver results and hdl cholesterol were abnormal so not sure why there hasn’t to been a follow up, even though I was on Budesonide. Thought people were monitored more on an elemental diet I must say. The only information I can find is for people with crohns, most people aren’t still on a liquid diet after 3 months!

I’ve tried to ask for other treatments but when it comes to medical requests, I’m at the mercy of my gastro. We go private too which is very expensive! Especially Elemental 028

Kind Regards,

Amy

[cloud9er]

Hi,

Has anyone tried taking leftover medication without their doctor’s permission?

Kind Regards,

Amy

[tex]

Hi Amy,

Sure, there are more than a few members here who can't afford the ridiculously high US prices for budesonide, so they order a generic from India. And, of course, doctors' prescriptions are not valid across borders, meaning that budesonide can be ordered from Indian pharmacies without a prescription.

If your question was concerning the effectiveness of medications as they age, the US military did extensive testing years ago, to see if they could still use older medications, and they found that (as long as it was stored under good conditions) after about 40 years or so, many medication lost about 15 or 20% of their initial efficacy. But of course, that meant that most medications were still fine for most treatments, long past their listed expiration dates.

Tex

[cloud9er]

Hi Amy,

Sure, there are more than a few members here who can't afford the ridiculously high US prices for budesonide, so they order a generic from India. And, of course, doctors' prescriptions are not valid across borders, meaning that budesonide can be ordered from Indian pharmacies without a prescription.

If your question was concerning the effectiveness of medications as they age, the US military did extensive testing years ago, to see if they could still use older medications, and they found that (as long as it was stored under good conditions) after about 40 years or so, many medication lost about 15 or 20% of their initial efficacy. But of course, that meant that most medications were still fine for most treatments, long past their listed expiration dates.

Tex

Hi Tex,

I mean being on a treatment plan with your gastro but taking Budesonide that was leftover from a previous prescription. I’m guessing it’s a silly question as it would be a breach of trust with the gastro. Not informing them will cause potential difficulties with their further advice or it may cause damage and one ends up in hospital. A sign of desperation though.

I have another update of symptoms, for the past week I’ve had bizarre sensations in my abdomen near my belly button. It feels like something is poking or rolling from the inside. It’s usually felt after I’ve eaten in the evening and tensing my abs when sitting or laying. It’s not painful or uncomfortable but rather alarming! I’ve taken a few pregnancy tests over the past couple of months and they’ve all been negative.

I actually had a spinal X-ray yesterday and it showed gas in the areas that correlate with the sensations. Has anyone else experienced or heard anyone else experience these sensations? I imagine they are muscle spasms.

Kind Regards,

Amy

[tex]

Yes, if you're putting your trust in your gastroenterologist, and assuming that he or she will eventually resolve your symptoms, then you need to be honest with them, and faithful to the treatment they prescribe. Unfortunately, the medical community, in general, and gastroenterologists, in particular, don't understand microscopic colitis, nor do they understand how to treat it. Consequently, most of us haven't had much luck following our gastroenterologist's advise, so we've taken the responsibility for our own health, and resolved our symptoms outside of the medical system. We don't burn any bridges, in case we need to order some medical tests, or need a prescription, in the future, but we don't follow their advice for resolving microscopic colitis, after we have a diagnosis.

I suspect we've all had the sensation you describe at one time or another. Occasionally, our intestines can writhe in our belly like a big snake. Yes, it's associated with the production of gas. It's rather obvious that something you are eating with your evening meal is triggering a serious MC reaction, and is causing your intestines to spasm, and that's helping to perpetuate your inflammation.

Tex

[cloud9er]

Yes, if you're putting your trust in your gastroenterologist, and assuming that he or she will eventually resolve your symptoms, then you need to be honest with them, and faithful to the treatment they prescribe. Unfortunately, the medical community, in general, and gastroenterologists, in particular, don't understand microscopic colitis, nor do they understand how to treat it. Consequently, most of us haven't had much luck following our gastroenterologist's advise, so we've taken the responsibility for our own health, and resolved our symptoms outside of the medical system. We don't burn any bridges, in case we need to order some medical tests, or need a prescription, in the future, but we don't follow their advice for resolving microscopic colitis, after we have a diagnosis.

I suspect we've all had the sensation you describe at one time or another. Occasionally, our intestines can writhe in our belly like a big snake. Yes, it's associated with the production of gas. It's rather obvious that something you are eating with your evening meal is triggering a serious MC reaction, and is causing your intestines to spasm, and that's helping to perpetuate your inflammation.

Tex

Hi Tex,

When I’m on the drinks it is difficult to tell if something is affecting my bowel movements as everything is mushy or liquid anyway. There usually isn’t much gas.

It could be the orange sachets I was on last week as I was running out of the cartons. I know my body doesn’t like any other flavour really but especially the sachets!

I’m only eating 4 things: summer fruits elemental 028, white fish, white rice and white potatoes. I’ve been eating them for months with no problems. I added them one at a time for three days with no problems. So perhaps I just need to wait until my body has gotten over the orange sachets. I’ve struggled adding chicken and carrots. Not sure when I’ll be allowed to stop the drinks

I also had covid too which made things worse.

Kind Regards,

Amy

[tex]

I forgot about the Covid, long Covid symptoms can last a long time.

Tex

[cloud9er]

Hi all,

I was starting to feel better this week, since around Monday. On Tuesday I took an Imodium as I needed to stop going to the bathroom for work. I didn’t go to the bathroom afterwards until Thursday morning, I experienced no discomfort but passed some gas on Wednesday. I had one solid bm only on Thursday, Friday and Saturday (tiny liquid bm on Saturday night). It gradually got worse with some cramps until yesterday (Sunday) I went several times and it was loose again. I’m now experiencing nausea, loss of appetite and reflux. Not sure what happened and what the cause is, possibly a build up of bile. Frustrating!

I had some peppermint tea last weekend, that may have helped. I’ve reintroduced pepper, that seems ok. Black tea seems to make me nauseous, disappointing!

Edit: another perfect bm this morning :)

Kind Regards,

Amy

[tex]

Peppermint can cause reflux.

Tex

[cloud9er]

Hello,

I did some research peppermint tea and you’re quite right about peppermint tea and reflux, something to do with the stomach valve.

After pepper has been successful, I’ve been trying olive oil this weekend. I’ve been experiencing good or possibly great energy levels the past couple of weeks. Yesterday after overexerting myself a bit I became very tired and napped for 2 1/2 hours. Then when I woke I had no appetite and a bit of nausea. I will try olive oil again today… third day.

I’ve booked an appointment with my gastro for Tuesday so we’ll see what they say. As much as I quite like these drinks I want to be off of them. The answer can’t surely to be on a semi liquid treatment with a very restricted food diet for the rest of my life! Chicken and carrot plus potentially olive oil have failed I will ask them to check other gastro organs, especially enzymes as these issues might not be gut related (damaged) but digestion or mast cell.

Will update later this week.

Edit: the energy level dip was a one off I think.

Kind Regards,

Amy

[cloud9er]

Ok so,

My gastro felt my abdomen and was very happy with how it felt plus me reporting that my only symptoms are nausea and lack of appetite. Obviously the drinks are like laxatives which is a side effect as they are liquid food. I’ve been pushing ahead with pepper and olive oil even though they are also causing nausea, in fact every food so far has caused this. They were concerned that my condition is getting worse and could be developing in to a more major form of ibd, (That was before they checked my abs for gas etc). They also mentioned eosinophilic esophagitis but I’m already on the correct diet for it. I’ve been prescribed a 20g dose of ppi which I know you guys will be angry about. I’ve not started taking them yet.

Apparently I wasn’t supposed to stop my supplements, so I’ve now restarted osteocare tablets, vitamin D and b12. I’ve had a few blood tests, I need to provide a calprotectin but that won’t be until January unless there’s something found in the blood tests (my decision). They didn’t want to test my other organs unfortunately.

I’ve been told that I need to keep reintroducing food and to gain weight, especially for pregnancy! The same message was received from the dietitian. They have allowed me some flexibility with what foods I can reintroduce, so long as I test them individually for three days. I asked about foods that I fancy eating due to lack of appetite.

I’m waiting for them both to speak to each other. Also waiting on blood test results. One of the blood tests is allergy testing again due to skin problems I’m guessing. I assume as I’m allowed supplements that I’ll also be allowed antihistamines.

Fish is starting to turn me off food as I eat it so much, I’m missing meat!

Think that’s it but I might edit later.

Kind Regards,

Amy

[cloud9er]

Happy New Year!

Hope you all had a nice time

I found Christmas rather difficult as to most people, food snd drink are a huge part of the holidays. I was given some freedom and struggled with it tbh, I went on a little rampage not trying foods for three days before reintroducing them. I was advised to not try beef yet but I’ve eaten it twice in December. I tried oats which I hadn’t eaten for years, it seemed to slow things down temporarily and cause gas. I had quite a bit of dark chocolate with the only ingredients being cocoa bean and sugar. Also ate more sugar (coconut sugar, white sugar and honey) than I should have.

I’m eating cubed roast sweet potatoes most days, they taste amazing! I’m currently eating white fish, chicken, sometimes pork, potatoes, sometimes rice, sometimes carrots, sweet potatoes. Butternut squash seemed ok. The oats and corn may make me tired. One big issue was that I made custard from Bird’s custard powder and it doesn’t specify what flavourings are. I made an apple oat crumble see.

I was tired throughout Christmas, I was able to relax on the sofa a bit which resulted in me napping for hours most days, if not every day... My nails have been in bad condition but when I was drinking more drinks they were great.

I’m currently having 5-6 bms a day, they haven’t bulked up as much as I’d like as they are mostly mushy. I am bloating and have gas. I’m drinking two elemental drinks for breakfast. One opinion I have regarding my last consultation when my tummy was perfectly flat was that prior to the consultation I had eaten the drinks prior to it only, I don’t think I had eaten solid food. So I think it may have been a false negative.

Another essay sorry! Thought by going on to two drinks and by now I would be back to normal.

Edit: my appetite is back and I’m not having reflux anymore, I didn’t need the PPI in the end. My body has struggled with the fat in full coconut milk :( I am stopping the contraceptive pill after today. My body doesn’t seem to like black tea either which is my favourite Chicken bone broth and soup made from it didn’t agree with me.

Kind Regards,

Amy

[cloud9er]

Hello all,

Another update is that I’m basically at square one of this flare, 8 months in! I’m now going 6-10 times, everything is yellow and mostly water. I also have gas, cramping, bloating (I’ll come back to that), intermittent pelvic and back pain. I have stopped the pill which apparently can cause bloating and may be the reason for the lower pain. My body doesn’t seem to be happy with anything that I’m eating. I’ve had two colds/bugs/flu since Christmas, I’m currently trying to recover from one. My husband complained of gastro distress last week. Colds/bugs/flu/covid are rife in the UK at the moment :(

I forgot to mention last time that when I was in Scotland, even the first couple of days I was going 4-5 times a day. I thought it was the water but perhaps it was just eating and reintroducing foods. I can’t go more basic with my diet!

I’m providing the calprotectin sample tomorrow, I will book a consultation when the results are in. I’m actually hoping they may prescribe medication to get me out of this flare. They may suggest another scope to see what is causing all this. I may ask for a pill cam to see if any inflammation is lurking in my small intestine.

Kind Regards,

Amy

[tex]

Amy,

My first impression as I read your post, and noticed that you've had more than one virus in the short period of time since Christmas, was that you're apparently very deficient in either vitamin D, or magnesium, or both, and because that's preventing your immune system from functioning normally, it;s probably the root cause of all your health problems. Your doctors should have checked for both those possibilities. If they did, they obviously misinterpreted the results. It's rather clear to me that if you ever hope to get your life back, you're going to have to do as the rest of us have done, and take responsibility for your own health. Relying on your doctors to restore your health is an exercise in futility, and a sad waste of taxpayer money, in situations such as this.

When I developed this disease over 20 years ago, my symptoms were debilitating, but I was very fortunate. I managed to get my health back simply because my gastroenterologist was kind enough to tell me that there was nothing more he could do for me, So I was forced to take responsibility for my own health, and that's exactly what I did.

Tex