OMG - I finally got to my new GI Dr.

[suzieq]

Hi all,

Norman visited again this morning, the Pepto is helping as well as the low fodmap diet. I have only taken 2 a day for the past couple of days.

Leah, I basically stay away from fruit but I do have a sweet tooth, so I have to cut that out too. I have had pretty plain food today but I'm still pretty gassy. I was wondering why, that's got to be it. I had some gluten free cookies that I made today but are full of sugar. This current flare started when I decided to try green smoothies, a mix a fruit & veggies, for a healthy snack/meal, turns out it was not a good idea.

Thanks,
Susanne

[tex]

Susanne,

I tried smoothies for a while when I was recovering, but apparently they usually contained too much fiber and/or sugar so I finally gave them up.

Thanks for the update.

Tex

[suzieq]

Hi all,

Things are going good right now. I am down to 1 Pepto a day and have been visited by Norman. I continue following a low fodmap diet, gf, cf, ef and sf. I have eliminated my evening glass of wine, cut down to barely 1/2 cup of coffee, and have cut way back on my chocolate craving. There is no Easter candy in this house.

I still experience a lot of intestinal noises, sometimes I think I'm going to have to run to get to the bathroom quick, but it's been okay, just noises. I have an active eczema area, I haven't had that problem in a while. I have ointment for it, it's an old prescription but it's helping.

I want to wish all the Potty People a Happy Easter and may we enjoy our meals without any problems.

Thanks,
Susanne

[suzieq]

Hi all,

I've been on Pepto Bismol for over 3 weeks. I started at 3 pills a day, got constipated and went to 2 pills a day, got constipated and went to 1 pill a day. Then I didn't go for 2 days but still took the 1 pill. Today the CC "mud" came back with a vengeance, I went back to 3 pills a day. I have been extremely vigilant about being gf, cf, ef and sf and I have been watching the fodmaps. So does Pepto really work for this? I'm a very skeptical about it now.

I'm very discouraged and frustrated. It's really getting to me.

Thanks for any advice and thanks for listening.

Susanne

[Gabes-Apg]

Susie
sorry to hear you are having a tough time...
the tough part about life with MC is there is not 'guaranteed solution'
medication wise what works for one, may not work for another...
I cant provide exact science as to why - so many here do trial and error of the various medication protocols to find what works best.

my initial thoughts to the issues -
maybe do 2 tablets a day - so that you dont have fluctuating Mud/C

do you think there are some external triggers that could be affecting you - pollen? dust?
in the day or so preceding the mud returning, were you at a different location? do anything different in your routine? could hormones be having influence?

are you eating low fibre? ie well cooked, bland, minimal ingredients type meals? soups/stews well cooked proteins and some safe vegetables? if you are having too many processed items based on GF/SF etc flours, cereal/breads/pasta etc this may be causing you some issues

the first 6 months is tough, it takes every ounce of our mental and emotional energy to figure out our MC management plan... please be assured that the effort is well worth it, as once we have our MC management plan, it is our foundation for wellness for life...
hang in there

[suzieq]

Hi Gabies,

Thanks for your reply.

For breakfast I have Rice Chex and have been having that everyday for over 2 years. Lately for lunch I have homemade chicken soup with well cooked carrots and celery. Dinner is whatever I make for my husband which I tailor to suit my diet needs and I make him some sides he likes that I can't have. I'm down to 1/2 cup of coffee and then I only drink water throughout the day. I did manage over a 1 1/2 year remission, Dec. 2013 to August 2015, after being on Entocort. I'm assuming the flare now is a reoccurrence of a flare that started August 2015 which was treated with Entocort and I was finished weaning off of it mid-January 2016 and this current flare started mid-February with my new GI prescribing low fodmap diet and this treatment of Pepto Bismol 3 weeks ago.

There is a lot of pollen right now and I do have seasonal allergies. I only take allergy medication if I'm really bothered. I suffer from anxiety and take diazepam. 1 year ago my husband & I recently moved 700 miles away from family and friends for a job opportunity and I'm very unhappy about it. It has been very stressful and I stress out easily.

I'll take 2 Pepto's tomorrow and see what happens, will go back to 3 if I have to. You are right, every ounce of our mental and emotional energy goes to figuring this out. It's very draining.

Thanks again,
Susanne

[Gabes-Apg]

the combo of the pollen, the mild ongoing stress, and doing the med change/eating plan change is enough to increase inflammation

I understand the moving and isolation aspects, MC is alienating enough, even harder with other major changes going on (i have done two major moves in the 6 years since Dx, do not have a partner and was 1000km away from family etc)

are you doing any relaxation type things, yoga? meditation? hobbies?

the other key thing (apologies if you have answered this before) have you had your Vit D3 level checked in the past 6 months?
are you supplementing with Vit D3 and magnesium? - both are beneficial for anxiety /depression and for managing inflammation

[suzieq]

Hi Gabes,

I joined a gym with a personal trainer whom I meet with once a week. I joined mainly because I have osteoporosis and weight bearing exercise helps the most. I was walking everyday, but when the CC returned in August I was afraid to leave the house for long period of time. I sometimes do the treadmill at the gym but it's more relaxing walking outside and then to top it off I broke my foot/toe new years eve so that sidelined me as well.

I started choking on my Calcium supplements which had D3 and Magnesium in it, even when I cut them in 1/2. I don't take any calcium supplements at all right now. I started taking a D3 supplement, 5000 mg a day. I see a rheumatologist in April for my osteoporosis and osteoarthritis and was going to ask about D3 and magnesium. I don't think my D3 has ever been checked.

I do know a few people, meeting them in the gym and a few neighbors but have not made any real friends. One neighbor and I were supposed to start walking together and I haven't been able to because of the CC flare. Someone I met at the gym suggested going shopping, again I was afraid of being away from a bathroom. I've gotten to the point where, if I am out, I have to know immediately where the bathroom is. I got on a plane recently and as I entered the aircraft I explained to the attendant that I had a medical problem and needed to know where the closest bathroom was to my seat. It's so embarrassing and isolating.

Gabes, thanks so much.

Susanne

[Gabes-Apg]

if you can - get your Vit D3 checked asap, if you cant do it via the doctor, you can organise the test yourself.

The Vit D3 and magnesium will definately help things, your digestion, your anxiety and the osteoporsis etc....

[suzieq]

Hi all,

Today I had the ultrasound at the gynecologist office. To remind you, this was done because my new GI said that I was too bloated and distended and to see a gyno. Without being specific, the ultrasound was very intrusive. I had a hysterectomy when I was 39, but have my left ovary. The left ovary was not visible because the bowel was in the way. The doctor spoke to me right after the ultrasound. Other than the bowel being in the way of the ovary (or what is left of it, they shrink as you age) it indicated that I have a lot of gas in the intestines but everything else was normal. I told the gyno that my intestines are always talking to me. BTW - with my insurance, the sonogram will be an out of pocket expense, I have a high deductible but to put the question of being too bloated and distended to rest (with the gyno and GI), it's worth it.

I don't go back to the GI dr until May. I am still on the Pepto Bismol, Low Fodmap diet, gf, cf, ef, sf and doing better than last report but like I said, the intestines are always talking. I went to my pharmacy armed with a list of gf brands, off of the celiac website, of my diazepam, cyclobenzaprine and levothyroxine. Next refill will be the gf brand. Looking at some of the ingredients, some contain lactose and some sugar (mannitol, sucrose), I don't remember what else. We couldn't find any that were a perfect fit. I just have to keep my fingers crossed.

In a few weeks I go to my new rheumatologist. I'm going to ask that my Vitamin D3 levels get checked. I know I have to start with magnesium, I'm looking for a spray or topical.

Thanks for being here. Any thoughts would be appreciated.

Susanne

[tex]

Hi Susanne,

It's a shame that you had to spend that money, but it's always best to err on the side of caution whenever there's any doubt about a potential health problem.

Normally, the medications you named shouldn't cause any MC-related problems, but it's possible that lactose might be causing your symptoms, and some of us have problems with the sugar alcohols (such as sorbitol, mannitol, etc.). In my case, sugar alcohols in a pill or 2 doesn't cause any problems, but if there is enough of it in my diet (such as several pills or more, or certain foods) then it can cause D. Some foods such as some types of fruit contain sorbitol, for example, and some processed foods contain sugar alcohols. I hope that you can find the problem.

Thanks for the update.

Tex

[Erica P-G]

If you are in an area like I am with no close place for reputable supplements you may need to go online to IHerb or Vitacost to get some magnesium that is external.

http://www.vitacost.com/life-flo-pure-m ... oil-8-oz-3

http://www.vitacost.com/life-flo-magnes ... on-8-fl-oz

These are two good products and at a price that I can't seem to find any lower.
cheers
Erica

[suzieq]

Hi all,

First, thank you Erica for the links for magnesium lotion and spray. Do you use both at the same time?

2nd, I truly doubt that the Pepto Bismol is working. The only thing the Pepto has done is make my tinnitus much much worse. Will that subside after I stop taking it? The Pepto gets me so constipated when I take the full dose, if I reduce the dose I'll be all right for a day then the "mud" comes back. I feel that it is just masking the symptoms, it's been a vicious circle. The 6 weeks I'm supposed to be on it is up next week. My intestines are always on overdrive, churning all of the time. I don't see the GI again until mid-May sometime. I don't know what other foods I can give up, I even had my prescriptions changed to brands that are gf, however, they might have lactose in them. I haven't started taking them yet though.

Another thing is that the arthritis in my hands has gotten so much worse in the last couple of months. I see my new rheumatologist in a few weeks for my osteoporosis and osteoarthritis. I was taking arthritis strength Tylenol, which does nothing. I stopped taking it when the CC flared up again in February.

Thanks again for any suggestions, I really appreciate it.

Susanne

[tex]

The only thing the Pepto has done is make my tinnitus much much worse. Will that subside after I stop taking it?

Usually, but not always.

The Pepto gets me so constipated when I take the full dose, if I reduce the dose I'll be all right for a day then the "mud" comes back. I feel that it is just masking the symptoms, it's been a vicious circle.

That suggests that it's effective, but something in your diet or your environment is preventing remission. Your increased osteoarthritis symptoms also suggest that something in your diet or your environment is causing a chronic inflammation problem in your body. I recently had a problem with increasing mast cell symptoms (hives/rash) and osteoarthritis symptoms (back/neck/joint pains). I finally tracked it down to chocolate. I need to write a post about that, now that you've reminded me.

Tex

[Gabes-Apg]

Suzi
agree with Tex, i dont think it is food triggers causing the issues, moreso something in the environment.

firstly, can you adjust the pepto dosage so that you are 'half way' between full dose and the reduced dose where the mud returns?
and yes, the full dose is masking symptoms of these other triggers

secondly, enviro can be soo many things, dust, pollen, chemicals, pollution, biotoxins (mould etc), water supply.
something of note, research has recently proven that EMF (Wifi, modems and mobile phones etc) make mould 600 times more active and impacting to humans. ie if you do have small amount of mould in your house, having the wifi on, having phones and tablets etc by your bed is allowing those biotoxins to enter your body and cause inflammation.

taking anti-histamines may help reduce the inflammation, but the best long term approach is to figure out what the triggers are and minimise your contact with them. It could be in the workplace, home, car, etc etc. The external enviro triggers make our food inflammation reactions worse, hence you current "super sensitivity" where you react to everything.

its draining and overwhelming, the sad reality is you are not alone, but that means there is some good information available to help you figure out what is going on...
The magnesium spray/lotion will help alot!