Flare Symptoms Changed

[Gabes-Apg]

Feeling pretty miserable now. Especially with Christmas in mind that is around 10 weeks away! Will this flare/disease/diet ever get better? :(

It can - with the right combo of support. albeit we (those with MC) have to realistic expectations of ourselves and our bodies ability to heal.
healing chronic inflammation takes months not weeks. do not put undue pressure on yourself that you have to be well by a certain date.

my suggestion - now the wedding is over - stop looking at life as 'Christmas in 10 weeks'
To gain wellness you need to let go of these types of events, (Christmas, birthdays etc) as milestones that you have to be well for.
Your focus now should be getting well for you, for your long term health and options to have healthy baby.

there is no fixed black and white timetable. Some people can have good healing in 3-6 months, for others it was a 12 month journey.
A big part of that healing journey is our mental and emotional attitude to life with MC
- accepting that things will be different going forward (and grieving the life we had pre MC with food freedom)
- loving ourselves and nurturing our bodies and its needs - not resenting the situation
- we cant eradicate MC, part of the healing journey is living with it, each person figuring out their individual MC management plan

I wish there was a quick fix, easy way to get well. If there was, this group wouldn't exist.
This group has existed for over 15 years, in that time a few thousand people have come here in similar situation to you, feeling miserable, wanting to be well. that is why we have a reasonable grasp of what works and what doesnt.


Do other IBDers take cholestryramine to help with BAM caused by disease activity?

LOTS do - there are extensive discussions about it on the forum
Cholestryamine is my safety net medication. I take small doses with water on days that I am socialising /out for the day and there is high risk of contaminates in the foods I eat.

Some discussion posts about BAM / Cholestryamine
https://www.perskyfarms.com/phpBB/viewt ... AM#p207910

https://www.perskyfarms.com/phpBB/viewt ... &hilit=BAM

[HockeyMom]

In the US they are already orange flavored so you just mix it with water . I honestly believe many people just don’t take ENOUGH cholestyramine. I weigh 120# ish and take between 8 and 9 packets a day. Maybe I’m too Swedish or too Sagittarius or something....but the texture of the stuff really didn’t factor into me taking it. I mean really....I was pretty sure I wasn’t going to live much longer! I know I’ve said it before here, but I would have eaten 5 pieces of purple dog poop every day if it worked for me...

Sorry, don’t mean to be cranky! My mom takes cholestyramine also and complains about the texture

Laine

[Gabes-Apg]

I mix the medicine with water to take
and then afterwards have a large glass of water to rinse mouth etc

my dentist also recommended cleaning teeth afterwards where possible

[cloud9er]

Hello again,

The late reply is because I was unfortunate to catch covid again :( It stopped my food reintroduction and made things a bit worse I worry. With both chicken and carrots I seem to get nauseous and lose my appetite with some gas and a tender stomach. Starting to get more upset at the lack of progress now. I’m getting desperate and have considered taking cholestyramine or Budesonide that I still have without a doctor’s permission! This is my 5th month of flare although without stopping the drinks I’m not sure I’m flaring technically as the drinks make you go to the bathroom and the bm seems like diarrhoea

Think I’m still struggling with grieving and acceptance even though I’ve had this officially for 2 years now as well as my limited diet.

I tried restarting Pentasa on Saturday and Sunday, to which I then experienced fatigue. Not sure if they’re related as I’m continuing to feel fatigue and in the UK at the moment there are plenty of colds and bugs going round plus I’ve started getting more active after covid. I stopped Pentasa in a panic.

My gastro would like to repeat a SeHCAT test before prescribing cholestyramine. My last test was March 2016, bit disappointed about that.

I just want to be able to eat a roast Christmas dinner regarding Christmas! Although we are having a big family Christmas and everyone around me will be able to eat and drink whatever they want.

The cholestyramine sachets I used to have were orange flavoured but horrible, mixing them with orange juice helped me gulp it down. Apparently you can get tablets nowadays but if I get a prescription through the NHS it will undoubtedly be the sachets as they are cheaper.

Kind Regards,

Amy

[tex]

If you've caught Covid again, that's probably your primary problem. Most of the MC patients who have caught Covid (whom I've communicated with), have told me that they relapsed when they caught the disease (Covid), and had a very tough time getting their MC back into remission.

Tex

[ldubois7]

I had covid in early June and am still struggling with getting back into remission.

I’ve had LC for 10 years and it took me many years to get into remission. I remain gluten, dairy, soy and egg free, but was able to add salads and baked goods back into my diet until this last spring….I’ve taken away everything that I think could be causing the inflammation, and yet I’m still struggling with frequent bowel movements through the day…not D, but pellets sometimes…

I had heart palpitations and trouble taking deep breaths about 6 weeks after covid, but that resolved within a few weeks.

Maybe we need a survey about covid and flares? I’m sure stumped by all this, as I was doing pretty well….

Linda

[tex]

I get the impression that Covid triggers an MC relapse that lasts for months and months, and tends to be very difficult to resolve. I'm not sure that this upgraded version of the board will even allow a poll to be set up, but I see that it displays the old polls, so presumably it should allow new ones to be set up. If it does, I'll set one up.

Tex

[tex]

Linda,

Done. That was a good suggestion. Thanks.

Tex

[ldubois7]

Thank you, Tex.

I’m curious, as my thinker is broken!

[cloud9er]

Heya,

I was advised by my gastro to wait 4-6 weeks before trying to reintroduce food again They also said the same about covid causing issues with patients that already have IBD and even in those that didn’t have it prior to catching it.

This is the second time I’ve had covid. The last time was end of November and December. I almost flared in February, or if I did it recovered quickly, before a flare started on 10th May.

Edit: as a side note my hubby managed to avoid covid both times! Despite being around me

Also big hugs idubois7!

Kind Regards,

Amy

[Gabes-Apg]

given the events of the past 12 months with the IBD and Covid, it is going to take time for your body to heal.

are you taking Vit D3 and magnesium, these items are crucial for minimising inflammation and supporting immune system

[ldubois7]

I had covid once, in June, as did my son & his family….my husband never got it either!

Hugs right back at you, Amy! Thanks!

I’m questioning my use of beef gelatin and collagen.

Anyone react to beef on Enterolab testing and are able to use the gelatin/collagen?

I make turkey bone broth, (and don’t do well with too much of it), but use the gelatin for baking in place of eggs sometimes.

Linda

[Mhdbeachgirl]

Count me in to the MC’ers that had a flare started by Covid infection. I was doing really well after 9 months on my restricted diet when Covid struck. My husband and I both got diarrhea on Day 4 but his resolved by Day 5 whereas mind has been going on since. I tried Budesonide which didn’t do much and now am on Cholestyramine, experimenting with different dosages and brands. I also did the baking soda test to check for stomach acid efficiency and no burping so ordered Betaine. We’ll see if that help with the gurglies etc.

[cloud9er]

given the events of the past 12 months with the IBD and Covid, it is going to take time for your body to heal.

are you taking Vit D3 and magnesium, these items are crucial for minimising inflammation and supporting immune system

Hi Gabes,

I’ve not been advised to take any supplements because the liquid drinks contain everything I need apparently. I regularly have baths and put salts in them though.

Kind Regards,

Amy

[cloud9er]

I had covid once, in June, as did my son & his family….my husband never got it either!

Hugs right back at you, Amy! Thanks!

I’m questioning my use of beef gelatin and collagen.

Anyone react to beef on Enterolab testing and are able to use the gelatin/collagen?

I make turkey bone broth, (and don’t do well with too much of it), but use the gelatin for baking in place of eggs sometimes.

Linda

Hi Linda,

I didn’t react to beef on the Enterolab test I’m afraid.

Kind Regards,

Amy