Advice/Help Please Newbie

[mcardle3]

Thank you Karen,

You are so ride, this is quite a ride for sure.....i am so grateful for finding this wonderful support site and for all the caring people on here. It's a God send for sure.

I'm so sorry you are in pain today:( No good at all....i don't have a lot of pain, thank God, but i do experience an overwhelmingly amount of diarrhea....and pain occasionally. Pain pills no good for us, unfortunately...or i would be taking them too. It just seems so unfair to have to suffer, and not really be able to do anything much about it. It makes no sense at all...this disease. I hate it....Soft hugs to you too dear....we are all in this together.

I'm on a rice kick....i think i'm potatoed out for a while....i do love potatos in the oven though, with olive oil and salt.....yum! I could eat those many times a day!!!!! I use lactose free butter some too....hard to tell if it really works or not, but i use it anyway:) And yes, you can make a casserole with 2 ingredients:) We can anyway:)

Tell me about how you got diagnosed? I have not been officially diagnosed yet, but my "gut" tells me i already know.

It is my firm belief that I've had this issue for over 30 years and was misdiagnosed.

In my mid 20's I began having episodic bouts (that would last for weeks on end) of explosive diarrhea. I went to my regular doc who said, IBS with no testing, put me on bentyl, charged me and set me free. I began eating what I would call a "white food" diet. Lots of chicken, turkey, very salty pretzels because it seemed to help and I lived on immodium.

In my 30's I couldn't take it anymore and sought out a specialist. A GI doc. I really liked this doctor a lot but he kept trying to tell me about the great success they were having with IBS patients with Amitriptyline which I had no interest at all in. It wasn't that I was anxious, it wasn't that my gut needed calmed down, it needed HEALED. I went on questrin to bind the bile salts (stools were ribbon and yellow or green always when not green diarrhea). He did 3 colonoscopies on me in my 30's and no biopsy taken ever showed MC.

In my 40's I began getting anal fistulas to go with my diarrhea. Lovely things, those! The colo-rectal surgeon told me several times he felt I had IBD not IBS, because it is RARE to see someone with IBS with these fistulas. My GI doc did more testing and said nothing showed.

In my 50's I was diagnosed with Connective Tissue Disease, as well as hyperparathroid AND ended up in the hospital for 4 days with severe dehydration and rib pain. Last year I was so dehydrated they could not draw blood at one point and put me in ICU on blood thinners and a lot of IV fluids going through me with a pump. My diarrhea was epic! If you've had a colonoscopy, when I go, it sounds like bowel prep for colonoscopy. They couldn't determine what it was that caused it sent me home, and I struggled with it until I found my sclero doc and decided to use the gastro at THAT hospital so they could work together.

Last month it began. Unrelenting bloating, pain, and diarrhea that could win me a prize if there was a prize for such things. I was put on prilosec which helped the belly but caused the D to just go even more insane. I even wore a diaper a few times we went out because I knew....I'd never make it when it hit. Finally it was enough and I called this GI...she performed an EGD (swallow a scope) and a colonoscopy with MANY biopsies. She took biopsies all over the place.

And that...is when they found out what has likely been my issue all along.

Are you scheduled for EGD and colonoscopy? I'm sorry you are in this mess too. I'm glad if I have to be in it, I'm in it with some very good people. xo

[Gabes-Apg]

kate
agree with Tex

In your case, since you have been reacting for many years, the vitamin and mineral supplements that you mentioned are probably a good idea, and if I were in your situation I would continue to take them. And then after I reached remission I would decide whether I needed any additional supplements, based on my diet at the time.

While ever you are inflammed, and magnesium deficient you wont absorb and process any other vitamins/minerals via tablet that well anyway

the focus for the next few months is
- sort out safe eating plan
- let the gut heal a bit
- fix magnesium deficiency

baby steps, once you get through this, then move on to next stage...

[Kate0129]

Thank you Tex!

I will keep on keeping on!

[Kate0129]

Karen~yes i've had 2 colonoscopies, and 2 endoscopies....i don't know why in the world they did not get biopsies for MC or anything else besides the polpys....all though they may have and nothing showed up. I just am not into doing all that again now....maybe at a later date i will change my mind, but honestly i think i have enough evidence of what's going on in my body every single day to tell me something ain't right ya know, and if i can heal myself with diet, then i will do that first. And lord yes i remember the prep, LOL, it was just like any other day for me really. No, i'm not that bad all the time, but it def was nothing surprising to me at all.

It's funny Karen, that i too crave very salty chips at times....not so much lately, but in the past i would eat so many chips, and i knew they were not good for me, but somehow the salt was just what i needed...i guess from losing so much through diarrhea......it only makes sense really.

Gabes Ryan~I am continuing on my bland diet of chicken, rice, potatos.....and that's pretty much it. Well i do eat gluten free chex w/rice milk for breakfast most mornings......I am doing very well with these foods thank goodness.....i will keep on for a while too......maybe forever:) And i am also using my Mag spray that i ordered.....:)

[jlbattin]

It's funny Karen, that i too crave very salty chips at times....not so much lately, but in the past i would eat so many chips, and i knew they were not good for me, but somehow the salt was just what i needed...i guess from losing so much through diarrhea......it only makes sense really.

Boulder brand has a new potato chip that is just potatoes, coconut oil, and sea salt. I have found that I can eat these very well and they are really good. Just a little healthier alternative when you do crave potato chips.

http://www.bouldercanyonfoods.com/produ ... ttle-chips

[Kate0129]

Awesome~ Thanks Jari!!!

[jennyjane73]

Hello all. I was diagnosed with MC just last week. I have already cut out dairy per my GI doc. My GI doc made it sound like it's no big deal but the more I read about it, I realize this is going to be a tough road. I have stomach pain, diarrhea, and nausea. I have struggled with the diarrhea for years. The abdominal pain and nausea have been symptoms for about 6 months. My celiac blood test came back negative but my test for corn allergy came back slightly high. I suffer from all kinds of pollen allergies so I wonder if it's all related.
Anyway, I am feeling overwhelmed and upset over all the diet changes I need to make. I feel like I need to take a couple weeks off work just to get used to the diet and chill out for a bit and get used to it. I am so tired all the time I could sleep half the day away. I am so new to this and I am just rambling because I don't know what else to do.

[jlbattin]

Welcome Jennyjane73................you've come to the right place..............

Sadly, most GI doctors don't tell us about the diet piece to this puzzle, which is really the only way we can heal. Besides the dairy, you also need to cut out all gluten. Fix some safe foods, such as chicken and rice, or turkey and yellow potatoes, and a potato. Your body needs large amounts of protein to heal. Bone broth is another staple that will give you lots of nourishment and healing. Our body needs bland foods right now to stop the inflammation and heal.

It can be rather overwhelming at first, but once you start your safe foods, you'll be amazed at how much better you will feel. I am fairly new to this (almost 3 months now), and I can honestly tell you I spent a lot of days this summer in bed, so tired and feeling so badly that I couldn't function. It does get better.

The best thing you can do right now (besides cutting out the dairy and gluten) is find a comfy chair and read as much of this board as you can........there's a wealth of info on here. Tex has also written a book that is up in the right hand corner that most of us have read cover to cover..........

Also, make sure you are taking plenty of Vitamin D3........I take between 8000 and 10000 IU's a day. It takes a lot for this disease. I also use spray magnesium. Once your Vitamin D3 level is up and you've cut out gluten and dairy, you'll be surprised at how quickly your energy level will come back.

Many of us sent off stool samples to the Enterolab to help us find out our sensitivities. Blood tests won't show the sensitivities you may have.

Again, welcome and be sure to ask questions. We are all one big happy family and all in this together. There really is a light at the end of the tunnel!

[Erica P-G]

Hi Jenny,
Welcome,
So sorry you are feeling miserable.

Believe me when I say everyone here at this forum understands you completely. I have been where you are only 4 months ago in May. My head spinned and my emotions took a nose dive, my world felt like it was crashing down around me.

I knew I had something going on with me in 2007 when I turned 40 yrs old, didn't pay attention to it until 2012 when I was dx with LC. The Drs. didn't really have a clue what to do for me to help me, so I did nothing for myself at that point.

It wasn't until 2014 that my hormones started giving me fits, so started supplements of estrogen and progesterone, did not realize it was only going to make me feel worse. This year I decided it was time to be proactive for myself since no Dr. was going to be able to help me, and that is when I found this forum.

So jump ahead a year later to May 2015 and my world fell apart and these lovely people came to my rescue literally. I have learned so much in the last 4 months and I am no longer in pain, no gas, no emergency trips to the bathroom etc....it's been a lot of hard work but if you are up for the challenge you will feel better than you have in a long time.

I started a post in the early stages and it may be some information that you need right now it is here http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 it has lots of valuable information from many contributors on this site during my desperate time of need.

Ask lots of questions
cheers
Erica

[Kate0129]

Hi Jenny~

I'm new as well....just a weeks on this wonderful support group of extremely helpful, sweet, smart, folks on here. I have to agree, the first thing i did was cut out dairy, BIG help! I will admit i have slipped and ate some cheese this week, and am paying for it dearly! I won't do it again!!!!!

It's scary, and i'm still scared and don't know how in the world i can live on chicken, rice and potatos.....but if it's what i have to do, i will. Ask all the questions you won't here, everyone is so helpful and nice, and they don't mind, believe me, i've been throwing them left and right with questions, and they always get answered quickly.

Currently, i am taking extra potassium, i take 5000 units of Vit D daily, and i ordered the Magnesium spray Erica suggested....been on that a week now. I am tired alot, this disease just does it to us....don't feel guilty for sleeping. We have to take care of ourselves, so rest all you can. Pamper yourself....take nice long soaks in the tub. Buy comfy pj's, do whatever you need to make yourself comfortable.

I for one cannot eat any of the foods i love, and this is so depressing. I've been dealing with IBS/D~Colitis for 26+ years, and up until about a year ago, i refused to believe i could not eat those foods, just sometimes, i can't....it doesn't work.....it sucks, no doubt, but we just do what we have to do to not be sick. I used to deal with tons of nausea....but to be honest since i cut out dairy, i have not had that problem much. Every once in a while. It's hard to imagine a life w/o veggies, salad, dairy, i cannot see a way out of it though really. Maybe one day i can eat that again.

So vent all you want here, cry, scream, and just know that we are all here for you. Like i said, i'm new, so i don't know a whole lot, but i'm here for a shoulder to cry on:) Hugs, my friend....together we can get through this!!!!!!!

[tex]

Hi Jenny,

Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.

You've already received some excellent responses, so I don't have anything to add to those at the moment, except that I would like to comment on this remark:

I suffer from all kinds of pollen allergies so I wonder if it's all related.

Growing up I had major pollen allergies and occasional asthma. When I was about 11, one night a serious asthma attack almost did me in. Fortunately, back in those days, doctors still made house calls, and our local doctor came out and gave me a shot that apparently saved my life, because my parents pointed out the next day that I was already turning blue when the doctor arrived.

I outgrew the asthma, but hay fever stayed with me, and so did skin allergies to just about any growing plant. But lo and behold, decades later, after controlling my MC symptoms by making diet changes, and getting my vitamin D level up where it should be, and taking plenty of supplemental magnesium, the ragweed is causing only symptoms so minor that I haven't even considered taking an antihistamine this season, despite high ragweed pollen levels. Years ago, it used to eat my lunch every year, with symptoms so severe that I couldn't stop sneezing or see what I was doing, unless I took an antihistamine almost every day of the season, and I was still miserable on some days, even though I took an antihistamine.

So yes, it's all related. Many/most of us have discovered that when pollen season rolls around, our MC symptoms can relapse, or if we are already reacting, they tend to become noticeably worse. The intestines are loaded with mast cells, and apparently these can also respond to pollen and other mast cell triggers, similar to the way that mast cells in the respiratory tract respond to irritants to cause upper respiratory symptoms. Except that those in the gut tend to cause D (diarrhea) and/or nausea.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Kate0129]

Speaking of allergies Tex~

Sometimes when i eat~my nose will begin to itch insanely and tingle.....has to be something i'm eating......plus i have allergies all year round anyway, and like you i'm allergic to everything when i was tested. I used to be on allergy shots for years, then i stopped them. I don't normally take pills for it, but on occasion i will take one.

[tex]

Hi Kate,

Yes, that would be a sign of a mast cell reaction to a food.

The problem with those allergy shots are that they are a form of forced tolerance, and we still produce antibodies if we eat the foods that we supposedly have been desensitized against. Therefore, if we don't continue to regularly eat those foods, we lose our tolerance, and our sensitivity returns, and we react to them.

Tex

[Kate0129]

Tex~


Thanks for being such a good teacher:)

[tex]

Kate,

I appreciate the kind words, but actually I'm just a student of this disease, like everyone else here.

Tex