Flare Symptoms Changed

[cloud9er]

Hi Tex,

The reason I have been stressed has a multitude of reasons. There is the stress of the wedding itself (with only 5 months to plan), me trying to run around and please everyone else, people close to me letting me down (shocked me), busyness at work, trying to keep up with the housework with general tiredness and then fatigue with the flare, worrying about my sister and her breakup, people being difficult regarding the wedding, the alarming cost of the wedding itself as it is eye watering! I’m still trying to deal with the ADHD diagnosis and therapy for childhood trauma. We should have had a holiday in April or May! :( We had planned to but New Zealand only opened its borders in May. Could have gone somewhere else.

I’m not convinced that postponing the wedding would have solved a lot of those issues. Some of the issues are lifestyle and learning what I need. Plus the fact I’ve been wanting to start a family for years, my fiancé has been dragging his feet so I’ve been pushing to get pregnant next year. We only moved out together 2 1/2 years ago, we are getting married on our 9th anniversary. I really struggle with life in general embarrassingly. My fiancé is my rock though. I have asked for part time hours some weeks, I work for my fiancé and there is flexibility; especially when fatigue takes over and I need a nap. Driving exhausts me nowadays and we moved away. I need to slow down and I need my fiancé to see that need. I’m hoping I will be a part time housewife if I’m lucky enough to get pregnant and carry a healthy child to term.

Furthermore my fiancé runs his own company, I’m sensitive and absorb his stress.

My fiancé is concerned anyway, though doesn’t want to postpone I think.

I will start taking Propranolol again, is that drug safe for MC??

Other people have said the same thing as you guys Gabes and Tex, I do appreciate your help and advice. Thank you.

I asked for a combined treatment, the gastro thinks I’ll be fine without the steroid Pred by taking the liquid drinks. I’ll be on them for 2-3 weeks. I have some Budesonide left anyway…

I changed the hen do to my house

Sorry for the essay! Pretty much everything is sorted for the wedding now too

Kind Regards,

Amy

[tex]

Hello Amy,

I'm satisfied that you're committed to seeing this through, and therefore, I'm convinced that you can do this. You should be able to deal with the entire occasion just fine. Apparently, all the major decisions have been made. So you need to focus on your health (I realize I'm preaching to the choir here, because you've obviously been doing that). But if you're going to get your MC symptoms under control, you absolutely have to start letting things go, and move on. When things don't work out exactly the way you wanted, just laugh about those occasions, and chalk them up to experience. Have no regrets.

Remember, no matter what happens, 100 years from now, no one will know the difference. The secret to being able to deal with MC, so that you can get into remission, is to cut yourself some slack, as Gabes has suggested. We have to shift down a gear, because we no longer have the energy available to operate at full speed. At least that's true whenever the disease is active.

One thing about running a business is that there's never a shortage of problems. Normally, before one problem gets resolved, two or three more will emerge. It's counterproductive for you to be concerned about issues of that sort, at this point. Let your fiancé do all the worrying about business issues — you can start sharing in those worries at some point after you get settled down into married life.

There will probably be some final details that have to be be worked out about the wedding. Don't dwell on them. What happens, happens. When things go exactly right, enjoy the memories. When things go wrong, don't look back. If you can't laugh about unanticipated issues, let them go, as if they never happened. You have most of your life ahead of you. Your own health has priority over everything else. Once you get your MC under control, and figure out how to keep it there, life will be great, regardless of what's going on in the outside world.

Tex

[cloud9er]

Thank you so much for your support! It means a lot

I’ll let you know how I get on. Apparently I will be drinking Elemental 028, of which the ingredients worry me slightly. https://elemental028.co.uk/

Hopefully starting today, I’m waiting to hear if they’ve arrived at the pharmacy.

Kind Regards,

Amy

[tex]

Maybe I'm overlooking it, but I don't see a listing of the actual ingredients. I notice they're all citrus flavored, so I'm wondering what they use for that flavoring. If it contains citric acid, please be aware that most of us react to significant amounts of citric acid, although it's possible that you might not react to very small amounts, depending upon the extent of inflammation in your digestive system.

Here's hoping that it works,

Tex

[Gabes-Apg]

It took me a bit of digging on the web site to find the ingredients
https://elemental028.co.uk/product/elem ... nflavoured

the unflavoured one
first ingredient is sugar
second ingredient is soy based

It does have amino acids etc Vit D3 is second last ingredient (ie token amount )

it is milk protein, gluten and lactose free

As I mentioned in previous post I do have hesitations of how well it can work and what happens once you start eating solids

If you do react to soy, it will cause inflammation

[tex]

Gabes,

Good catch.

Tex

[Gabes-Apg]

Amy
you have been in my thoughts this past week (lots of healing energy coming your way)

what I did think, is that your healing journey will be like the spinning plates thing at the circus (this is the same as mine)
no one thing helps my multiple auto immune issues / hormone/ gut etc

I had to do small amount for one of them
then do something different for the next one
then do something else for the other one
(like the guy with the spinning plates on a stick at the circus. )

the low inflammation diet and lifestyle was the foundation for all of them
for you with the ADHD, emotions/mental aspects, gut and skin please be prepared that you will need to small steps for each of them and it will take time.

for me to get the multiple issues from chronic to managemeable took me 18 months. I dont say this to scare you or overwhelm you, moreso to help you have realistic expectations of the healing journey.

healing hugs

[cloud9er]

Hello again,

Sorry for the late reply! It has been 2 weeks today The liquid diet isn’t too bad actually, I quite like the flavours. However, I would advise anyone to sip the drinks slowly otherwise you will get nauseous and perhaps diarrhoea. I found it difficult at first to drink 6 drinks in a day. My hunger has returned in this past week and I have around 5 or 6 drinks a day. I still have the same yellow diarrhoea that I had when I started this diet at around 5-8 times a day The past week again I have experienced mild pain and cramping. Not sure what that all means really, hopefully it’s worked. I find out tomorrow if I am to do the full 3 weeks or if I will wean before then. From my research online it seems that most people after two weeks have normal bowel movements, or green anyway

I really wanted to take steroids and the liquid diet at the same time so if one didn’t work, the other would. Though I wouldn’t know which one made me better. I’m guessing Prednisone would have made me a lot more hungry though I’ve also lost around 2-3 pounds, I rather like with my upcoming wedding of course. I’m a healthy weight at 120 pounds and I’m short

I still have the eczema surprisingly, so it seems not to be caused by diet

I thought I made lifestyle changes 7 years ago when I came out of the real world and started working for my fiancé. It’s been a long road, probably moreso for a youngster because we are still learning about ourselves. Now that I’m in my thirties I think I’m getting there. Motherhood will cause chaos again though

Thank you for the thoughts and healing hugs

Kind Regards,

Amy

[cloud9er]

Hello again,

I’ve just been told I need to be on this diet for 12 weeks! Although I’m allowed a break for my wedding day and honeymoon

Missed a few points in my previous post but I’ll update eventually.

Kind Regards,

Amy

[tex]

Hello Amy,

Thanks, for the update. I hope your situation continues to improve, and at the very least, doesn't begin to deteriorate.

Tex

[cloud9er]

Hello everyone,

The wedding day went well, I took an Imodium before heading out and it lasted 24 hours. I only experienced a bit of nausea in the evening, so I stopped drinking alcohol and stopped eating. I don’t remember any discomfort or pain The food was delicious although I was apprehensive about eating.

The first bowel movement after Imodium stopped working was solid but rather thin and lighter in colour than I expected. I had wedding/birthday cupcakes that upset my tummy though I finished them two days after the wedding. The bowel movements on solid food were getting looser but still weren’t the diarrhoea of the past 4-5 weeks. Now that I’m back on the drinks it has returned. I have sent a bit of a whingy email to the dietitian and gastro stating that I don’t think I need to be on them for 12 weeks and that I only have MC. The honeymoon is on Saturday, I would like to eat one solid meal a day which I’ve already been allowed to. I’ve asked for advice as to what to request. I think my problem is with bile tbh; either the yellow (even dark) diarrhoea is too much bile or perhaps not enough

I’ve always had a sweet tooth before these drinks but now I’m just craving savoury foods, all of my old favourites but mostly meat, potatoes, rice and salt. Plus tortillas

I take back what I said about the eczema, it’s mostly healed! I suspect corn or pork. I wasn’t eating rice that regularly. My enterolab results brought up sensitivity to corn and rice.

Kind Regards,

Amy

[tex]

Amy,

That's great news that your wedding went smoothly. The stress relief as you're going forward should help to allow your digestive system functioning to get back to normal.

Bile is light yellow in color. Bilirubin causes the bile to change color as it travels down the intestines. The longer the transit time in the digestive tract, the darker the stool becomes. Consequently diarrhea caused by excessive bile is usually relatively light or even yellow, whereas constipation usually results in stool that's very dark brown in color. If you had access bile, you would have diarrhea, and the color of your stool would be relatively light. Probably your colon is having to relearn how to program its peristaltic pumping action as a result of the various challenges that it has been facing for months, and it should eventually return to normal performance.

Tex

[cloud9er]

Hello all,

Just posting an update. I’m still struggling :( I’ve started to wean on to solid foods now, I think this is my second full week finished. I’m still having the drinks as breakfast and a snack. The food introduction order has been:

Potato
Rice
White fish
Chicken
Carrot
Butternut squash
Sweet potato
Avocado
Cauliflower
Black pepper
Olive oil.

You try a food for three days, if no symptoms occur then you can keep that food and proceed. I got to chicken and had nausea and pain. I can move on to carrot tomorrow, I believe. If you have symptoms, you have to go back a step for three days. Though I’ve had symptoms when I went back on to a liquid diet for a day because of strong nausea and some pain Plus the other two days of food. I wonder if it’s another organ or two that’s having problems rather than or in addition to the intestines?

Stool is still mushy at best, same sort of colour. I did have some solid-ish stool at some point, usually as the first bowel movement of the day. The drinks still give me urgent liquid yellow stool usually with cramping.

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

Apparently my gastro said some of their patients live on a liquid diet permanently They’re rather expensive too!

Kind Regards,

Amy

[tex]

Amy,

I'm not sure why your doctors haven't considered this, but I'm guessing that you have bile acid malabsorption (BAM). 40% of cases of persistent diarrhea that don't respond to ordinary treatments are due to BAM, including MC patients.The proper treatment is cholestyramine, and you'll have to experiment to find the best dose. Most members here have had the best results using one of these four products:

• Epic cholestyramine
  
  42806-266-95 Orange 60 USP packets
  
  42806-267-97 Orange Can
  
  42806-270-95 Light Orange 60 USP packets
  
  42806-271–97 Light Orange Can

A few members have found other brands to work, but most of them have found that alternative brands don't work as well as the products mentioned above, and many alternate brands don't work for them at all.

Tex

[cloud9er]

Hello Tex,

My current gastro hasn’t said anything about my sehcat test result, there weren’t very interested in cholestyramine either although I was taking it when I first went to them.

Does BAM contribute to nausea? Not entirely relevant but my last liver function test was slightly out, that could have been the Budesonide though. I tested positive for AMA autoantibodies which is strongly linked with PBC, something I’m rather worried about developing. Would taking cholestyramine hide PBC and would it help or hinder it?

I can always ask the question about going back on to it. I absolutely hated the sachets though and now I can’t mix it with orange juice. Do other IBDers take cholestryramine to help with BAM caused by disease activity?

I forgot to mention that I’ve stopped taking Pentasa.

Kind Regards,

Amy