Warning! - Just when you thought you might be getting better

[Janie]

To everyone who responded to Gail, what an amazing support system. I may not respond to the posts but I read them all. Thank you everyone. And we all hang in there, sometimes by out fingernails.
I love Doc Martin

[gac]

My daughter just CANNOT figure out what the hell is wrong with me that I have no friends. That I have chosen you all and other online friends over face-to-face friends. But I know that all of you understand completely. Gabes, you who are so warm and loving and caring and like a sister/mom to all of us, it just shocked me when you said you had no friends. I always assume everyone in this world is surrounded by so many friends and never ever needs me. But you are no different from me when it comes to counting friends and what a huge comfort that is to me.

It is not like I sit here staring at walls with nothing to do as I love love love to read and have thousands of interests in the Kindle books I read, always seeking to learn from what I read. The same with the shows I record at all hours so I can watch at my leisure. I'm working my way thru the entire boxed set of "West Wing" which I love. I also recorded the entire Absolutely Fabulous series when it recently aired on LOGO as I love British humor and that show makes me laugh all the way thru it. Laughter is the best medicine. And I still can laugh at myself all the time and find stupid things I do on a daily basis to entertain my daughter.

All of you are so incredible and I never ever thought I would find anything but technical info on this site. It took me a long time to work up my nerve to just open my heart and ask for help, not just physical help but help for my mind and my heart. And you all have given lovingly. I will always always always love you for it. Thank you so very much. And I hope it helps others, not just me, as I know this battle is one we all fight. And a year from now someone else will find this posting and maybe it will help a new person too.

Bless all of you for caring.

Gail

[brandy]

Hi Gail,

My experience is that it is not uncommon to lose friends from MC. I find middle aged single and married women dine out together a lot as an activity.
Year 2 of MC I was too weak to do much other than work and I lost a lot of friends during year 2. Now that I'm doing better I am building my friendships back but our activities are totally different. We are hiking, going to shows, getting coffee etc.

[DebE13]

So sorry Gail for your current frustrations...... You aren't alone. I've been struggling with MC since 2007 and just went back on Entocort last week after being off of it for nine months. I really didn't like the idea of being on steroids and was tapering off for quite some time. It really didn't help much at all with my D except preventing night issues. I started LDN last December and decided to totally end the low dose of Entocort I was taking. I decided to start it again after spending a month panicking about this holiday weekend where we are having company at our cabin. i generally get up between 4-5 am daily and the idea of pooping (loudly) six times in the wee hours of the very silent northwoods with guests in the house had me terrified. So I started back on 3 pills a day in hopes it would help. It has to so e degree but as I sit here waiting for everyone else to get up I am getting nervous about how much time everyone else is going to spend in the one bathroom.

What should be an enjoyable relaxing weekend has turned into a mess for me. I can't wait until I can go home tomorrow and resume my life of solitude. I am used to my husband onerhearing my morning routine but still don't like it. After all, how attractive is that? I seem to run on a different schedule than everyone else. Up at five and ready for bed by nine. No exceptions. I opted out of last night's dinner at the local bar/pizza place because there is nothing there I can safely eat and I don't tolerate crowds and noise well either. I know I disappoint my husband but it's just not worth the added stress. We spent the afternoon out and about browsing local shoppes (not enjoyable for me either) so I was already tired out. I still function under "The Spoon Theory" and am very protective over how I spend my time. Some days I feel like my normal days of being on the run from sun up til sun down and other days It will hit me out of nowhere- and I am done for the day with no warning.

I am trying to look at this as an experience in self acceptance but then that very angry little voice from deep inside shouts out I should not be uncomfortable in my own home. It's like having a split personality- I try to go with the flow because I know my husband loves company and he shouldn't be stuck living with my limitations. Plus, the limitations we have are what we allow. Then again, MC and additional autoimmune conditions do place limitations on activities ....... It is all very frustrating.

I have the added bonus of taking my thyroid meds three times a day so eating is based around my 7 am, 1 pm, and 9 pm pill times. I suppose taking my meds with food wouldn't be the end of the world but I don't like straying from my routine which when on vacation..... Routine goes out the window.

We have a trip to a winery planned (I don't drink) and an afternoon of kayaking. I am trying to keep an upbeat attitude but I've been sitting quietly in the kitchen for the past three hours and everyone is still in bed. When we finally do eat breakfast we will be out the door. After I eat, I prefer to stick around for a bit just in case I need the bathrroom. Sigh. I always tell my son that any situation, no matter how bad, is only as bad as we make it. I'm trying really hard to follow my own advise, haha.

[gac]

Deb, all of your "in the woods" activities sound like something I could never do so you are a very very brave person to be attempting them and your husband should applaud you for being there, even if you sit on the porch and enjoy the scenery so you can be close to a bathroom. Kayaking, hiking, trips to a winery, sightseeing up and down the street all are stressful places to go when bathrooms can be so far away - far away when Big D attacks occur. Those who do not have MC do not understand the unexpectedness of this or the massive volume of it. We can't wait to find a bathroom and eating out is out of the question. All these activities don't create "fun" for us, they make us sad, stress-filled, sick, and they make us want to hide even more than we do. They make us want to count the minutes until we can return to the safety of our homes. And I mean our real homes.

Just this morning I only had to walk from my front porch about 10 steps to the bathroom and if it had been any further, I would not have made it. What if I had been in the driveway or the yard? I'm on Cipro right now for UTI and it is causing flare-up and so I am battling the same-old same-old. If it isn't one thing, it is another. Leaving the house just isn't an option. And my daughter told me I don't know how to have fun any more. How true that is!!!! But how I wish I could have fun and maybe the day will come when remission occurs and I can eat some food other than the same 5 foods and walk more than 10 steps from my bathroom.

Until then, Deb, don't let anyone put you in an uncomfortable position of being where you must share a bathroom or go places where you don't even know where there is a bathroom or you have to run behind a tree. It just isn't worth it. Let your husband have fun with your friends and if your friends are true friends and if your husband is understanding, they will all understand that this is an awful awful autoimmune disease that we have over which we have little if any control. We can take Entocort, rigidly control our diets, eliminate stress, stay out of the heat, etc. But still we may have problems. Healing takes a long long time. I was diagnosed 14 months ago. Still battling.

Hang in there, Deb. I surely understand how difficult this is for you as I am feeling the same thing.

[brandy]

Deb said,

I always tell my son that any situation, no matter how bad, is only as bad as we make it.

I like your quote. I need to work on this concept.

[dhouts]

Gail,

I'm so sorry to hear of your nightmare challenges with MC. In 2006, when I was getting ready to divorce, I had this idea that I would work at a preschool and travel during the summer, specifically with Cross Cultural Solutions. But once the D started and later the diagnosis, all those plans went right down the toilet. So, after mourning the loss of that idea, I went on to plan B. Which currently entails living a stress-free life as much as possible and only doing that which I can do. I now live vicariously through others.

Through this group, I have found the importance of supplementing and a strict diet. Something that I knew nothing about for the last ten years. The other interesting key in fighting inflammation is the use of antihistamines. I know you were told not to add anything until your VD and mag levels rise, but I'm wondering if adding Allegra would be beneficial to you. I mean, it might help calm down the inflammation. IDK, I'm no doctor, but it seems to work for a lot of people here and I didn't see it mentioned in any of your postings, so I was wondering if perhaps it might help.

Please keep us informed and sending lots of light your way.

[dhouts]

Gail,

I'm also wondering if the mag you are taking may be contributing to this flare. I ask because what you describe you are going through is very similar to what I went through last May. After my colonoscopy in April, I received the confirmation that I did indeed have MC. I accidentally found this group and began reading about VD and mag. I actually had reached remission. So, I ordered both from the same company that was deemed safe, and after adding the mag, I went into a horrible flare. It took me a few days to figure out that it must have been the mag. I immediately stopped taking it but my body would not calm down. It was then that I started on Entocort and discovered ReMag.

This was just a thought that I had...hope you are better.

[tex]

What Diana says about the magnesium is definitely a possibility. If we cannot absorb it, then it can become a laxative.

Tex

[hollyweb]

Agree! As one who's currently working hard on reversing a long-term severe mag deficiency, I can also relate to these comments. I'm using ReMag mostly orally, but sometimes I'll apply a lot transdermally to lower back, backs of hands, etc., plus I'm experimenting with different dosages of Dr's Best Chelated Mag Glycinate, and continuing to use Ancient Aliens mag oil.

Of all these forms, it's obvious that the ReMag is the most effective for me. However, I've received advice here to continue with several forms, in an effort to help ensure optimal chance for mag absorption. I find that my stools do change as my dosages and times of taking the various mags change. What seems to be best for me is to take 2-3 Dr's Best Mag Glycinate (1 capsule at a time, with several hours between doses) in the am up until after lunch, and from then on only sip ReMag. I sip it 5-6 sips every 45 minutes-1 hour up until bedtime. If I get up during the night, I also take a few sips unless feeling "rumbly". When I'm home and able to do so, I apply the oil 3-4 times a day.

My current mag intake is about 900 mg/day, not counting the mag oil spray. 200-300 mg Dr's Best; 600-700 mg ReMag. But again, I'm focusing on this specific deficiency right now, and everything else I'm doing revolves around this protocol. With this kind of focus, it becomes easier to back off on some days, and add a bit more on other days, depending on symptoms. My mag deficiency symptoms include: feet/calf cramps; extreme fatigue especially in the morning (hard to get out of bed); muscle/back pain; emotional. anxious, depressed, quick to cry. Also, I'm keeping my foods very simple, cooking frequently and eating the same 6-7 safe foods, so that I don't have to think/worry about that part too much.

Positive changes I've noticed are many, and include getting more and better quality sleep! For the first time since I can remember, I can lay down at night and be able to relax the muscles of my body. But yes, finding that balance and the right amount/type/frequency/timing of taking mag supplements can be very tricky on the GI system. Another positive change for me is that I don't have to take an antihistamine every day!! I feel great about that!! Bags (edema, swelling) under the eyes are hovering around just under the knee (up from ground level, yay!).

Tex and Gabes know much more about this than I do, and certainly Vanessa too! This is just an update from a newbie; after 6 months of only using the mag oil spray (and quite a lot of it, up to 1,600 mg/day) and having my serum mag level still be at 1.4, I began the ReMag and the Dr's Best Chelated Mag Glycinate. Some days, I don't take the Dr's Best, as I do still have a lot of malabsorption issues. It's been a little over 6 weeks now for me with the ReMag, and it's awesome to be able to control how much and when you take it, and to feel the difference of having mag in the cellular level.

~ Holly

[dhouts]

Hey Holly,

Do you have a link for the Ancient Aliens mag oil? I googled it and the only site that came up was Ancient Minerals. Which, BTW, is out of Livermore. I wish I could just drive there and purchase the lotion!

Anyway, please let me know, Thanks!

[hollyweb]

Hey Diana!

That is funny. I could have sworn I purchased the 8 oz spray bottle and the 64 oz refill bottle of Ancient Aliens mag oil. However, I went to look at the bottles, and they say "Ancient Minerals". The label looks exactly the same as the Ancient Aliens label I remember seeing several months ago. What I'm thinking is that it is the same thing, with a new name. Possibly the name change due to the TV series "Ancient Aliens"? Possibly the company wanted the option to expand into other mineral products?

Anywho, if anyone else has any knowledge, please share! This Ancient Minerals does seem to be the one recommended by Dr. Dean and Dr. Sircus. Here's the Amazon link, and don't forget to use smile.Amazon!! https://www.amazon.com/Ancient-Minerals ... B001G8JSS0

~ Holly

[dhouts]

Thanks Holly, I am using the ancient Minerals Mag Lotion. Interesting discovery about the name, wonder why it was changed...

[DebE13]

Gail, thank you for your kind words of support. My situation is no where near the severity of yours and given what you are going through, if I were in your shoes, I'd be at home right now. I continue to have urgency issues but I'm pretty predicable. Although it seems my guts take great pleasure in slowing me down when I want to get out the door. Mine is more a vanity issue in that I prefer to do my business without anyone around. But then again, who doesn't?

My husband is very understanding but to a point. Unless you have MC you really don't get the full picture. Although, he has been living with it since 2007 too so I don't want to sell him short. It' his son and girlfriend who are visiting drove four hours to be here. There are certain family activities that I want and should be a part of. I opt out of many, many social/family events so there are times when I need to give a little too because as much as I get stuck with the mentality that the world revolves around me and my health issues- I want my husband to feel a bit of normalcy too. It's such a fine line to walk- I tire easy, I have strict bathroom/eating routines yet I continue to evaluate how much self-imposed stress I put on myself. Yesterday went well. The winery trip was enjoyable for everyone. I could have skipped it because I don't drink but it didn't kill me to spend a couple hours doing something as a family. The kayaking trip was fun. It was a couple hour trip down the river that even had a small stretch of pretty tame rapids. Sometimes the prepping and thinking gets me tired out before we even begin. After that we grilled out and played yard games around the camp fire. It was truly a great experience watching my husband enjoy time with his son that he sees only a couple times a year.

I look at my original post and I was miserable but then I reflect again on the rest of the day and it seemed pretty normal. Normal is not usually my game. So I go back to the lessons of acceptance and control. It's like having a split personality.

Have you tried Entocort?

Now that I'm back on it, my trips to the bathroom are right around three times in the morning. Now that the weekend is coming to a close I am going to give it a few more days to see if I can get things to be less D and then try turkey and rice as my sole food for a couple of days. I have to get into a mind set of sticking with the plan because the self discipline is sometimes more than I care to put forth but now is the time to try it. I always hoped there was something more to my continued D and hopefully this time around I will be able to find out which foods are on the offending list.

I've put my MC on the backburner since 2013 when I was dx with thryoid cancer. I'm finally at a point where I think that's about as fine tuned as it's going to get. I'd still like to try NDT but as of yet, no luck in any doctor in my area that allows it.

My thoughts are with you.

[dfpowell]

Deb,

I'm not sure which thyroid medications you are on, but I recently read that Cytomel has a food starch filler that contains gluten. I know you always do a lot of research on your medication so this probably is not a problem for you.