Flare Symptoms Changed

[Gabes-Apg]

eating out with multiple intolerances is always fraught with risk.

hopefully it doesnt unsettled the trip too much

[cloud9er]

Hello again,

We stayed at a lower star hotel for the first few days, they home cooked all meals. They also took me to a supermarket to ensure I had everything I needed.

The Rees hotel in Queenstown tried with my dietary requirements. Kathryn at breakfast especially has been amazing! She is gluten free herself so has been very attentive, even providing a bowl that hadn’t been used for other cereals. They already had the coconut yogurt of my choice, I brought milk and cereal with me.

Travelling to Milford Sound from Queenstown by coach was problematic, we left at 07:00 before breakfast. The trip was arranged by our hotel and they didn’t consider/check with the day trip company. Luckily I had some corn crackers, almond butter and jam, so not ideal! I picked up corn tortillas from a cafe, the only ok ones I could find contained capsicum. Wish I had asked for a packed lunch the day before I’ve had to eat salted crisps sometimes, I know they upset me.

The hotels go downhill from here. I’m getting more frustrated by these nice restaurants.

The second hotel with good star rating served me a dairy yoghurt. A third hotel getting things wrong, despite me sending a fairly strict list, they still try giving me ingredients I shouldn’t have! I think I was given soy and egg last night in the form of Vogels gluten free bread. We arrived late, the restaurant had stopped serving food so they left a sandwich. I was unable to check the ingredients before eating.

I have been drinking most days as when in Rome, that won’t be helping either.

I haven’t gad a solid bm for about a week and a half. I have massive bloating where I look pregnant. Full of dismay at the moment. Should have gone self catering!! Though that is tiring on holiday and limits what we can do in a day. May still need to go on to Pred after I get home. I want to cry

To make matters worse at each hotel, activity and airport, people have been coughing and/or sneezing. Hubby has now gone down with something, my glands have been raised for the past few days

Edit for treatment update: Apparently I’m not to wean off of Budesonide when home and will transition to Prednisolone, which I thought was rather unusual. The delay has been because of immune system risk of bugs/colds/flu with travel. My calprotectin was normal in March, so to me that sounds like the bug/cold/flu over Christmas and January was the cause for 517 result. I’m assuming the treatment will put me in a good place to conceive Also tummy is a bit better as I’m eating more simple foods.

Also I tested negative for HLA DQ2 and 8 coeliac genes, it also says 0.4 to 0.7% of coeliac patients test negative.

Further edit: I’m slowly getting worse I thought Budenoside was supposed to mask any food sensitivities!

Kind Regards,

Amy

[cloud9er]

Hello all,

Just a quick update, I developed suspected horrendous flu as I was travelling back and it hit the day after I got back. I thought Covid was the worst thing I’ve ever had but that was actually worse.

I went to see my gastro which turned out to be less than pleasant. Think they freaked out that I may have caught an infection whilst travelling (I did get the flu after all), as my symptoms got worse whilst there. They didn’t want me to travel so I guess it all proved them correct. I wasn’t prescribed prednisolone because of the flu/infection, apparently it could have killed me. They don’t think I’m taking my disease or their advice seriously :(

Interestingly I have been advised not to travel abroad, I think they meant whilst trying to get to remission?

I’m weaning off of Budesonide, almost there now. I’ve been taking an antihistamine regularly for the past week (I usually forget to take supplements regularly). It will be 10 weeks in total which is a bit longer than most.

I haven’t had my period this month which I’ve never experienced before! It’s making me feel odd, not sure if it was the flu, Budesonide or not ovulating I’ve had a negative pregnancy test but will test again on Monday. Since the flu I’m feeling a lot warmer generally, I’m usually constantly cold. I have been experiencing nausea in the morning and intermittent constipation both are likely related to MC, Budesonide or the antihistamines.

I’m due to see them again in the next week or so. I’m having one or two bms, they are sticky now though. Some are quite dark brown and there has been mucus. I have cheated mildly on my diet a couple of times, I’m a bit more energetic but I’m doing a bit less so not sure. Also had more post viral fatigue than usual. I’ve also had one stye on each eye, both of which are practically gone now.

Edit: due to my ongoing issues, I’m considering being referred back to NHS Gastroenterology. It’s getting rather expensive now. Apparently the wait is up to a year, but I’m not sure if that is before a diagnosis. My current gastro sees MC as serious but I doubt the NHS gastros will, from what I’ve seen on UK FB groups.

Kind Regards,

Amy

[Gabes-Apg]

Amy

my thoughts on your journey so far.

a) you have to take charge of your health. the health system in all countries are not set up to support patients with these type of health issues.
the health system does not acknowledge the importance of nutrition / diet to manage these health issues.
they also do not acknowledge the importance of key nutrients like Vit D3 / magnesium etc
most doctors do about 6-12 weeks 1 hour a week of nutrition tutorials in their first year of uni.

b) I know you are taking the diagnosis seriously but I think your priorities are a bit swayed. hens events and the wedding was a priority could not be delayed, doing the international trip was a priority - international travel is taxing on a healthy person even more so for any one that is immune compromised (which you are) you have to make decisions that put wellness first. not your partner, not your family and not social pressure from friends and family.

c) diet and supplements. if you are not putting the focus into taking the right supplements, your bodies ability to heal is limited.
changing doctors, changing meds, changing jobs etc won't help long term unless you are doing the key basics that we have discussed with you over the past 12 months.

I apologise if my reply sounds harsh - but I have seen many others like you in this forum over the past 13 years. they struggle mentally and emotionally to accept the challenges, make the changes necessary to live a healthy minimal symptom life.
we are truely sorry there is no quick fix or easy solution for this awful disease.
what I have seen in my 13 + years in this group and living with this disease - YOU have to take charge of your health, own it, make it a priority, the right meals, the right supplements, the right lifestyle choices are key part of your daily routine yes that means sacrifices changes that not only impact yourself but also partner, family, friends.

From memory this is your only auto immune issue. you are young and have the ability to get good healing and remission.
I am 53, live alone, no savings, I have to work full time to support myself financially. as I am not 'sick' enough to not work and the current health system class this disease as 'slightly inconveniencing diarrhoea' as the main symptom (obviously the guidelines were written by people that have never lived with it)
I have to follow the low inflammation eating plan, low toxin lifestyle, take the right supplements, to be well enough to work full time
I have multiple auto immune issues that I will be honest with menopause etc it is hard work to keep them 'calm'

Life with minimal symptoms is worth the effort.

[cloud9er]

Dear Gabes,

It’s not too harsh, much nicer than my gastro. Thank you for your continued advice and support! I’m sorry if it sounds like I’m ignoring it, I promise you I’m not. Aside from the magnesium glycinate and cheating by having a little chocolate every now and then or gluten free chicken nuggets and/or mccains naked chips usually when I’m feeling too tired to cook or nauseous; I’m not doing anything deliberately wrong.

I will need gastro monitoring when I (hopefully) get pregnant, but concerned about timings and if they would actually see me before giving birth

The New Zealand trip was booked years in advance and my hubby initially wanted to propose on it, we would have lost our money if we didn’t visit as hubby had booked accommodation in advance.

I’m taking a separate vitamin D supplement, I’m still taking the ubiquinol and folic acid, also because of the Budenoside I restarted osteocare. Will switch to magnesium glycinate shortly. I’m not having baths at the moment as my mother in law is staying with us and we’ve given her the bathroom

I’m struggling with my hubby a bit. He is learning slowly to take my disease fully seriously if that makes sense. It’s not just about eating the right things. He thinks we can continue on our very busy lives, travelling the world as normal and working late including weekends. It’s all too much for me. I’m trying to get him to allow me to work part time, take a step back and not get stressed when very busy or things go wrong. He may think I have being uncaring recently, my boundaries have caused arguments

Also stress may be on the horizon as one of my Nans is recently ill, the other one needs major back surgery, my Dad had a brief hospital stay last week. My brother has been in trouble with the law, my sister has been struggling with diabetes. The wedding was positive stress, now there is negative stress! All before a baby! That’s life I guess.

Sorry to hear of your issues! Praying that you can receive help in some way to ease your health and help your lifestyle

I’ll post again when I’ve spoken to my gastro, unless there is no change.

M&S Made Without Chicken Goujons

Chicken Breast (50%), Water (10%), Rapeseed Oil, Rice Flour, Chickpea Flour, Maize Flour, Cornflour, Potato Starch, Salt, Raising Agent: E450, Sodium Bicarbonate, Ground Black Pepper, Dextrose, Stabiliser: Xanthan Gum, Ground White Pepper, Sage, Flavouring, Dried Vinegar, Dried Lemon

Kind Regards,

Amy ‘difficult case’ cloud9er

[Gabes-Apg]

In the early stages of healing we encourage whole foods - nothing with more than 4 ingredients


this item is full of MC triggers
M&S Made Without Chicken Goujons

Chicken Breast (50%), Water (10%), Rapeseed Oil, Rice Flour, Chickpea Flour, Maize Flour, Cornflour, Potato Starch, Salt, Raising Agent: E450, Sodium Bicarbonate, Ground Black Pepper, Dextrose, Stabiliser: Xanthan Gum, Ground White Pepper, Sage, Flavouring, Dried Vinegar, Dried Lemon

there is soy based items, spices / pepper can be inflammatory



Good luck in getting hubby 'onside' for life with MC. you need his support and understanding. he too has to adjust to the changes, and be part of the mental and emotional acceptance of life with MC.

[Gabes-Apg]

Today is line in the sand time

there will always be 'challenges' and stress triggers via family, friends, health pandemics, economic conditions.
that is why taking charge of YOUR health and optimising wellness is important

be honest with yourself, your hubby, and those around you. there is no quick fix for the MC, you need to figure out your MC management plan
you need to put your needs first for a bit to do that. so that going forward your body can handle pregnancy.

[cloud9er]

In the early stages of healing we encourage whole foods - nothing with more than 4 ingredients


this item is full of MC triggers
M&S Made Without Chicken Goujons

Chicken Breast (50%), Water (10%), Rapeseed Oil, Rice Flour, Chickpea Flour, Maize Flour, Cornflour, Potato Starch, Salt, Raising Agent: E450, Sodium Bicarbonate, Ground Black Pepper, Dextrose, Stabiliser: Xanthan Gum, Ground White Pepper, Sage, Flavouring, Dried Vinegar, Dried Lemon

there is soy based items, spices / pepper can be inflammatory



Good luck in getting hubby 'onside' for life with MC. you need his support and understanding. he too has to adjust to the changes, and be part of the mental and emotional acceptance of life with MC.

Dear Gabes,

Oh no! Which items are soy based?! This makes me worry about how to choose processed foods in future. I do hate ‘flavouring’ though

I found a recipe to make my own chicken nuggets using crushed rice pops and mayo, I can’t eat mayo so I used almond butter with honey and water. In future I will use Coconut Collaborative yogurt in place of mayo as the consistency is roughly the same.

Kind Regards,

Amy

[Gabes-Apg]

All legumes are an issue if you react to soy
chickpeas are legume

our suggestion avoid processed foods as much as you can - even after years of remission eating processed foods with this many ingredients / trigger items is high risk to cause inflammation.

[cloud9er]

Hello again,

I’ve put on 7 pounds, half a stone in 3 weeks! That seems a bit excessive. Would that be normal if I’m healing? I’m trying to remember if this happened before and I just need to start exercising again.

Kind Regards,

Amy

[tex]

That can happen in some cases where patients are taking budesonide, but without budesonide, that would be an unusually high rate of gain.

Tex

[cloud9er]

I stopped taking Budesonide on 19th May, so the weight gain is probably the Budesonide. Running has made me gassy which I find odd.

Still having diarrhea 1-2 times a day. Last week I had a lot of nausea, worse than I usually have. I tried drinking boiled water with fresh ginger, it was the only thing that took the nausea away. I understand that it will be frowned upon. My eczema is trying to return.

On another note for the past month I’ve struggled with styes, I discovered another two today after finding one on the same eye yesterday, that’s a total of four on that eye and weeks ago I had one on the other eye. I’ve washed my bedding several times over the month. I will speak to my GP about it but I don’t want to take antibiotics!

Edit: it’s just after midnight here, my tummy has been off this evening. Not sure if it’s something I’ve eaten, I’ve given myself food poisoning or an illness incoming as hubby feels a bit off and I’ve been sneezing Back to racing to the toilet, liquid with bits in it. Hope it’s a one off night and not back to square one!!

Kind Regards,

Amy

[Gabes-Apg]

do you wear contacts? if so can you take a break for a while and make sure you dont use any eye make up

warm compresses can help a lot. Not all styes are bacteria related.

When I first had auto immune issues 15 years ago I had eye issues. I have not been able to wear mascara or eyeliner since.

[cloud9er]

Dear Gabes,

I don’t wear contacts and I rarely wear makeup nowadays anyway, last time was on holiday in NZ I believe a month ago. I’ve been using optrex and warm compresses yes thank you

Kind Regards,

Amy

[cloud9er]

Hello again,

Another quick update, I’ve been having pelvic pain for some months now. I had an internal pelvic ultrasound today and they said everything looked fine for gynaecology. That’s rather confusing especially with the most pain menstrual cramps yet with my last cycle, as well as currently experiencing pelvic muscle pain. I’m now wondering if it is a gastro issue I would like a ct scan or mri really. My current gastro isn’t working at the moment Trying to get an appointment with an alternative.

Gastro symptoms are mostly loose bowel movements, sometimes liquid and solid pieces in a bm; bloating, pain has returned, still have nausea and lack of appetite. I had to use Imodium on Saturday because of stress with my Nan dying and travelling to visit, it only lasted 12 hours.

Kind Regards,

Amy