Puzzled by a change in my MC

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 9:20 am

Hello everyone ! Well here I am back with more questions. You may remember I came in here when I first got dx with MC. You helped me so much. I followed your guidelines in regards to diet, Vit D and mag and my D got better and even went away for 2-3 months. So thank You all for that !

Jump ahead to the last 8 days, My D started up, not sure why, my diet has been free of gluten,soy, and all dairy.
Anyway the D came back about 1 week ago and I was back to going 20 times a day.

Then 4 days ago I noticed I am having all the cramps that I usually have with the loud noises but I am not going. I feel the need to go -but nothing. So 3 days goes by of not going but lots of noise & cramps going on and then I get in a lot of pain and my abdomen is all swollen and hard. The pain got really bad but I let 3 days go by like this and I am thinking wow I have all the cramping and noise and I need to have D but I can't go, its like I am constipated.

I look on line at midnight last night to see if a person can have MC and C, and I see some people with crohns do and they said take M of M, so I took a dose of that last night. Well I have been up all night going, pure water pouring out of me. I have gone at least 25 times. Thankfully pain is much better, such relief. I HAVE NEVER BEEN SO HAPPY TO HAVE D !! Wow that is just wrong on all levels...lol

My question is what is going on with this - does this happen ? Can a person be having D for days on end and all of a sudden you have C but have all the cramping an sounds going on and feel the need to have D ? What do you do about this ?

I have been missing you guys and hope your doing better Tex ~ and a special Hello to Gabes !

Thank you for any insight you can give me about this D switching to C. I wonder do I keep taking the M of M ?

Post by **tex** » Mon Sep 18, 2017 11:00 am

Hi Rebecca,

Sorry you're having problems again. I used to react by having alternating periods of D and C. Between them I had the symptoms you describe. But I was always able to force a bowel movement after a few days. Did you possibly start taking an opioid-based painkiller recently? Opioids can cause compaction problems. Or did you add anything before this started happening? If not, this may just be part of the D to C cycle but it got out of hand. Are you still taking a magnesium supplement? Constipation is a symptom of magnesium deficiency. I suspect a chronic magnesium deficiency was the cause of my alternating D and C back when I was still reacting.

Tex

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 12:59 pm

THANK YOU Tex for your response. I can't tell you how much I appreciate you !
I have not started taking any drugs. I would never ever take an opioid. I have never been able to tolerate those. The hospitals actually have it down on my chart that I am allergic to them. I can't tolerate any wine or beer or alcohol either.

For pain I mostly live with it. If it is really bad I take a Tylenol. But I only take maybe 2-4 of those a year ( and have not had one in many many months) . I have some great bio-feedback type techniques I use to manage my pain.

I am really shocked that MC with D can change to C, I guess I just had no idea in the same day watery D could turn to C.. But I am so grateful you shared your experience with that.

I almost went to the dreaded hospital last night, the pain was so bad. But before going there I looked up colitis with C and saw where M of M could be used for that. I happened to have an expired bottle of it ( not even open) I took it and I feel much better today.

I believe you nailed the problem, its probably magnesium deficiency. I am not keeping up on it. I am very low weight again, I was doing so well, I got off the feeding tube ( TPN -picc line in arm) and about a month after going off TPN, the MC came back with massive D. I lost another 10 pounds and I am due to go to the GI on this coming Wed to discuss getting another feeding tube in my abdomen.

However the GI has to use what is called a G-J tube. The formula would go into my intestines and the doctor said this may not work due to the MC, which she doesn't even know is back full force.

Well now with this MC so flared up I can't see how we could use my intestines for tube feeding. I am slowly starving to death, and my gastroparesis will not allow a feeding tube into the gut.

I am not sure what can be done to save me at this point. I was going to use my own blended foods in the feeding tube and was so hopeful I could use lots of proteins and be a better weight. (My BMI is 13)

My immune doctor who deals with my APECED & Ehlers Danlos said at this point we must work on the MC, he said if the Budesonide is a treatment I must go to it regardless of the side effects ( due to APECED) fungal infections being my problem. So I just started the Budesonide this morning. To try to tamp down the inflammation.

Boy what a nightmare my GI tract is.

I don't know if I should take the M of M tonight or not. Is the D back for good or am I still going have C when off the M of M.

What would you do Tex ?

Are you doing better now Tex ?

Post by **tex** » Mon Sep 18, 2017 3:05 pm

Well, can you tolerate taking a small to modrate amount of oral magnesium without it causing D. Not only would that help the C, but magnesium relaxes muscles, so it should help to reduce the gastroparesis, also. Like you, I'm afraid the formula that the doctors are planning to use in your intestines will trigger an MC reaction because it's not designed for people who have many food intolerances.

I'll never recover completely, but I'm a lot better than I was right after the stroke, so I can't complain. Thank you for asking.

Tex

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 3:18 pm

Hi Tex, wow so happy to hear that you are better than right after that stroke. Phew that was some scary ! Don't be doing that stuff !

I can't take any pills into my gut, I can't swallow well anyways, so I use the mag spray and foot soaks Gabes told me about. Is there a patch that would give me more mag or some kind of liquid drops ? I do have a powder mag, called Calm, would that give me bigger doses of mag than the
Ancient Minerals ?

I am experiencing a lot of noise and cramping still but no D since this morning. I am feeling pretty uncomfortable, as anyone with this does.

I agree I am so not seeing a J tube in this area that is all flared up... How could a person with MC tolerate that.

I want to do the tests with EnteroLab, but I wrote them several months ago asking if the IVIG I take every 2 weeks would skew their results, they said the man who would know that is on vacation or gone somewhere and they would ask him and get back to me but they never did get back to me.

These tests could help me dial in what foods are safe. At this point I am scared to eat anything ! Anyway my husband wrote them again today, maybe this time they will respond.

Thanks Tex !

Post by **tex** » Mon Sep 18, 2017 3:41 pm

I don't know of any patches, so the oil or foot soaks are probably your best bet. There's ReMag, which is a liquid, but that's probably too potent for the current status of your digestive system.

Dr. Fine may have not responded because he doesn't know the answer to your question. He may have never encountered another case such as yours.

Tex

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 3:53 pm

Thank you once again Tex. I suspect you're right Dr. Fine doesn't know if the antibodies I take in every two weeks would skew his tests.
My husband thinks they wouldn't skew the results as they are assaying for specific abnormal antibodies that can cause inflammation/allegeric response in colon.

I will be doing a foot soak tonight with epson salts !

Hoping tomorrow is better.

Erica P-G · Post by **Erica P-G** » Mon Sep 18, 2017 4:41 pm

Hi Rebecca,

This Patch may work .... https://www.patchmd.com/Vitamin-D3-Topical-Patch.html

I wouldn't do any of the others they offer as they use Mag Oxide as their ingredient, but for this one with VitD3 and K2 they are using Malate 250mg which is ok.

This is the only patch I have come across. I sure hope you feel better soon.

Cheers
Erica

Gabes-Apg · Post by **Gabes-Apg** » Mon Sep 18, 2017 5:41 pm

and a big special hello back to you!!
so great to see a post from you, not soo good that you are having these issues...

I am one that had more C issues than D issues during my MC journey. And agree that at its worst it is harder to contend with than WD.

magnesium has resolved this. Epsom salt foot soaks work really well.
topical magnesium oil/lotion are pretty good too, for your delicate skin/low weight body maybe half the magnesium oil via some deminineralised water so it doesn't sting or make you
itch.

sorry for lateness in chiming in, have had busy 3 weeks with working 3 different jobs, and then a mega big car show weekend event. health is good, mind and wellbeing is great.

hope things improve for you soon
xoxoxo

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 6:25 pm

Oh thank you so much Erica , this looks perfect for me. I ordered it ! > (This email confirms that your order was received at PatchMD.com.)
This is going to be very helpful for me. I can't thank you enough !

I hope you are doing well. I have lots of catching up to do !
Hugs, Rebecca

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 6:49 pm

Awww there is my Gabes !! So great to hear from you ! Ok so this C is something you have dealt with which I am sorry for you but lucky for me. I know I can pick your brain about it ! LOL

Yes I have the mag oil by Ancient Minerals, and it does sting but I don't mind it all. I am going to do the foot bath tonight. I remember most of what you taught me from my last crisis you helped me through.

Wow having C when your body wants to have D is very painful. I have never been so uncomfortable. I have only had 4 bouts of D today and that is from taking the M of M last night. I am scared to let the C build up again but I don't want to take that M of M because I didn't get any sleep last night from all the trips to the 'loo'

I am hoping the mag foot bath and extra oil will help. I am going to take extra of the liquid Vit D in hopes it will help that budesonide work better. I had to break down and take the budesonide because this is a much worse than I had last time and I am losing way too much weight.

( I ordered the Vit D patches (thanks You Erica,

) because I am not consistent at taking the drops- my BAD )

That is great you are doing the car shows still and I am thrilled you are stable and still here helping everyone. I am not sure working 3 jobs is so wonderful and hope that isn't forever !! I always have your froggie pictures right next to me and they bring me great joy everyday !

Thank You Gabes !

Post by **tex** » Mon Sep 18, 2017 7:59 pm

Rebecca,

What sort of antibodies are you taking? Are they IgA or IgG. The EnteroLab tests are based on specific IgA antibodies so that they will not even respond to other IgA antibodies.

Tex

Rebecca2z · Post by **Rebecca2z** » Mon Sep 18, 2017 8:06 pm

Tex,
The IVIG infusion I have gotten for last 9 years are Intravenous Immunoglobulin which contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors.

These IVIGs are sterile, purified IgG products manufactured from pooled human plasma and typically contain more than 95% unmodified IgG, which has intact Fc-dependent effector functions and only trace amounts of immunoglobulin A (IgA) or immunoglobulin M (IgM).

Would you think these trace amounts of IgA would skew any tests I have done with EnteroLab ?

Thank You in advance !

Post by **tex** » Mon Sep 18, 2017 8:24 pm

Rebecca,

I think your husband is right and I doubt that they would make any difference. Dr. Fine should be able to verify that, if he's willing.

You're very welcome,

Tex

Gabes-Apg · Post by **Gabes-Apg** » Mon Sep 18, 2017 8:55 pm

Rebecca
glad the froggies are still part of your day.

I have put some photos up of my mega classic car weekend.
http://perskyfarms.com/phpBB2/viewtopic.php?t=23549

Enjoy