Need to vent

[HockeyMom]

Hey Guys-
Well, just needed to catch up with my MC peeps. I posted a few months ago about this year being horrible on many levels (spouse died in March, etc). So of course MC flared up but in hindsight has been sort of twitchy for awhile before that.

When I was diagnosed in 2011 and joined this site I did the Enterolab test which showed I reacted to gluten, dairy and soy. Eggs were ok at 6. So I did PB,
entocort for 3 months, glutamine/probiotics and changed my diet religiously. With all that I got great for about a year..didn't even touch an immodium for
like a year and a half. Moved to new home in 2013, flare then but got the train back on the track. Truly was very functional but would occasionally do the
MC mud thing and need to take an immodium here and there..tried different things then..always did 5000 of d3, added 200 mag glycinate, tried curcumin.. Cut out legumes and other things I thought might be setting me off, didn't notice much difference.

So, cut to January 2016 when all hell broke loose with my husband. Guts went crazy and cutting back to the basics really just put me on a roller coast of up
and down. Did more Enterolab testing in July which showed I reacted to EVERYTHING!!! Nothing in the 1+ category, everything in 2+ category except rice in the 3+ category.. Wow, and I had been living on rice, chicken, almonds/milk. So, tried to eliminate all this and ended up just dumping way too much weight (who even know if what I was eating was ok or not?). Tried LDN thru PCP's office for a few months but noticed nothing with that..don't have much in the way of AI stuff anyway I don't think.

Started cholestyramine in September slowly. Had horrible gut rumbling going on before this, couldn't sleep because of it actually. Add that to sort of not sleeping because of my life situation and ick!! Upped the cholestyramine pretty quickly and got great in a couple weeks at 2.5 packets a day. I mean, this was a miracle cure I thought. Felt like a normal human being, no rumbles, sleeping, etc. Actually got sort of constipated so went down to 2 packets a day and that's when things went bad...plus bad menstrual cramps. So, upped cholestyramine to 4 packets a day, added some immodium, cracked and went to GI doc (hadn't been in like 4 years..). I have to admit that I ate some things I shouldn't have which confirms they are bad (rice, chicken)..no more..that was at a Christmas deal when I was good.

I am so tired of being up/down. Rumbly/bloaty..bloaty is new for me. Cut cholestyramine back down to 2.5 packets because I thought maybe that was a problem. GI folks have me scheduled for a colonscopy 1/31 (of course...), are fine with me fiddling with the cholestyramine and immodium but don't offer any other suggestions until after the colonoscopy..which terrifies me because I am dreading the prep and whole process..naturopath wants me to try and eat more than I am..says I actually need more sugar..which I sort of believe cause I feel sort of shakey sometimes which is new. Feel crappy in general.

Naturopath changed me off mag glycinate 200mg day to some other combo supplement with mag citrate in it. Still do some spray most days and a epsom
bath most nights.

Thoughts?? Jokes?? I really feel like I am starting to lose it and I've not even melted down to the total diarrhea stage (am taking a little immodium)..just bloaty and gurgly..

Hockey Mom

[Gabes-Apg]

firstly
a big hug


my initial thoughts are - Vit D3 are you taking any?
the cholestryamine is good, but it will also be depleting magnesium and impacting absorption of Vit D3 - both of which are essential for your body to heal and inflammation levels to reduce (and your enterolab results are proof of the high levels of inflammation)

food wise - lots of home made bone broth, regular small meals with good serves of protein (that will resolve the sugar jittery issues)
or maybe a protein powder like hemp protein with some coconut sugar.

Magnesium - in current situation you would need at least 500mg Elemental magnesium per day given your D issues and the cholestraymine topical is your best option
Vit D3 - in current situation at least 7000iu per day preferrably lingual so you actually absorb it (when you were taking the 5000iu and taking cholestryamine at same time you were probably only absorbing 1/3-1/2 of it if you were lucky)
given the stress and inflammation, you could do 10,000 iu per day for a few weeks to get the inflammation levels down

what we have seen here is that if you are Vit D3 and magnesium deficient medications have a limited scope of success.

hope this helps

[HockeyMom]

Hey Gabes-
Thank you...I need a hug right now, truly. Right now I am taking 5,000 of d3. Can up that to 10,000 easily for awhile. Can increase the mag sprays/lotion and soaks also..what do you think of the naturopath taking me off the mag glycinate and switching to the other form??

I actually am so sick of sweet potatoes, squash, etc. Thats all I had really done until recently.. overcooked of course. I think I went bad by adding white potatoes/potato chips back into my life. I stopped at the grocery store this week and just bought baby food to take to work-carrots, sweet potato, squash,
bananas, green beans, apple sauce. Easy to resort back to turkey, elk, beef (beef was the least reactive per Enterolab..), haven't dabbled much in fish which I need to. Have also been doing guacamole or avacados for the calories/fat.

So, I will soldier on...I feel like I am turning into a beast at work because I just don't feel well. Thank goodness my coworkers are a great bunch.

My last colonoscopy was in 2008....they say this new prep is better. But I am terrified I will be out of work for days with it!! You or anyone out there had one lately. I get that they want to do another one as my dad died of what started out as colon cancer.

I need my stress level to just decrease in general...I've done a pretty good job of dealing with all things legal and financial since my husband died...if I could just get this to settle down I would be golden. Heck, just sleeping better would be a wonderful thing.

Hockey Mom

[Gabes-Apg]

you are maybe sick of those bland basics - but it is what works best.

baby food sounds 'easier' but they can have hidden stuff like soy etc in them.
a much better option is cooking 1-2 of your safe veges in bone broth and mashing them up
home made bone broth has amino acids and other goodness that will help the gut heal

Right now I am taking 5,000 of d3. Can up that to 10,000 easily for awhile.

as I said above, if you are taking the cholestryamine, this would be affecting your bodies ability to ABSORB the Vit D3 you are taking so you are not getting 5000iu (and havent been for the time you have been taking the cholestryamine)

if you are taking the cholestryamine, you need to have the Vit d3 at least 2 hours away from taking the cholestryamine, OR swap to a lingual form of Vit D3, so you have a better chance of absorbing it

if It was me, in this situation, i would hold off on the scope for now. get the inflammation levels down.
getting good doses of Vit D3 and magnesium will help with mental and emotional wellbeing as well.

the naturopath has good intentions, but maybe does not understand the uniqueness of MC. MC is not like other IBD's.
for those with really bad D, using topical magnesium is a great option (and is cheaper than good quality oral forms)

I need my stress level to just decrease in general...

I would suggest podcasts and audiobooks lots of cheap and free option out there
here is a link to some suggestions from forum members
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22350

[HockeyMom]

Gabes-
So I have only made bone broth early on with beef bones. Beef is the least reactive of the 2+ reactive category!!! I assume I need to cut beef out as I have been eating it..Will see what other type of bones I can get. Chicken is out for me obviously and I eat turkey assuming it it safe...but who knows. Wonder if I can find other bones out there. Butcher shop??

The baby food is Gerber and it is sort of just one ingredient stuff with water maybe...I looked at those pretty hard before buying them..

Hockey Mom

[Gabes-Apg]

the baby food would be ok - so long as you are having regular serves of protein at the same time - protein is more important

lamb bones make good bone broth (and lamb settles well for many) turkey would be ok.
whole foods have boned meat - or butchers or you can buy them online

what we find is people do better on meat sources that are grass fed - wild game like venison, or lamb.

[Lou Ann]

Hockey Mom,
I just had a colonoscopy a few months back....the prep isn't great, but it's very doable.....much better than years back....the test itself is a piece of cake....the nap is wonderful!!!! It makes the annoyance of the prep forgettable for sure..... You will feel just fine after. They recommend not to do much the rest of that day, but you can go back to normal the next day. Good Luck !!!

Lou Ann

[HockeyMom]

Lou Ann-

Thanks for the reply. I haven't had a colonoscopy since 2008...thought the prep was fairly awful..had to run into a porta potty on the way to the procedure as I lived 25 miles away in the boonies!! If I remember at the time...you drank a bottle of mag citrate that morning. Ick.

I've had friends have colonscopies lately who don't have gut problems who tell me..."the new prep is way better".. to which I say, "so you had the old prep in the past then??"...no, this is their first time!!

I'm not worried about the procedure so much...just more of a pain for me to get a ride to and from now that hubby is gone. Bless my friends is all I can say! I am scheduled to work the next day, so hope all is well gut wise. Of course nowadays I have "Depends" left over from when things were bad years ago..so I can always do that as an insurance policy I guess.

I really was hoping to be feeling better than this when I scheduled this thing...might try and postpone it a few months depending on how things go in the next week or so.

Hockey Mom

[Lou Ann]

Hockey Mom,
I had to drink twice....one in the evening and one a few hours before the procedure....I was pretty much empty from the first round so I was reluctant to even do the second one, but I did.....I had no urge to really go on the way there, but i am not to far away from the office, maybe 15 minutes....and unfortunately I know every bathroom in a 10 mile radius (and have used every single one ).
My first colonoscopy way back when was when the pills came out...good lord that was awful !!! 4 horse pills every 15 minutes for an hour....it sounds easy, but by the end it literally took me 5 minutes to swallow one pill....I don't even think they have that anymore, or at least I hope not!! Any prep is not pleasant, but better safe than sorry for us MC'ers.....but listen to your body, if you're feeling that bad a couple months probably won't hurt to wait. Choose what's best for you at the moment.
I'm sorry for the loss of your husband also.....but glad you are fortunate to have good friends.

Lou Ann

[kbb]

Hi Hockey Mom:

I had a colonoscopy back in May. It was my first so I don't have anything to compare it too, but it did not seem too bad to me. I was more concerned about it than it required I guess is how I would put it. I live an hour away from the hospital and did not have issues getting there. I couldn't tell you what they gave me for prep though, sorry. I followed the directions exactly as given though.

Prayers for healing and peace for you.

-Kelly

[brandy]

Hi Hockey Mom,

I am sorry for your loss.

Hockey Mom said:

Naturopath changed me off mag glycinate 200mg day to some other combo supplement with mag citrate in it. Still do some spray most days and a epsom
bath most nights.

Just my experience but I found I had to go off of oral magnesium when i could not kick out of a WD flare of 4 months. I switched over to epsom salt foot baths and gradually went into remission. I can now tolerate oral mag again.

[HockeyMom]

Thanks guys...I know this is a journey....look for the progress!!

I've been dealing with this since 2/2008 though didn't get a formal diagnosis until 10/11. I truly believe stress has alot to do with this thing as I'm a very LOW STRESS person normally!!! But this past year has really rocked my world on so many levels and literally brought me to my knees emotionally many times. I'm trying to just put one foot in front on the other daily...

I know this sounds completely STUPID...but one of the reasons I really need to get this thing settled down is I booked a trip to Maui for March 3-10 with friends..did this way back in August during a period when I was feeling pretty good. It is something that has kept me going, something to look forward to. So the colonoscopy might need to be pushed back until after I get home...I am actually stressing out about not being able to get there...bought plane tickets for my son and I and unfortunately I've already pretty much eaten his plane ticket as a friend of his later on announced his wedding that weekend and my son is the best man. I think I need to get there for my mental health!! We've rented a condo with a kitchen so I can cook what I need to.

Upping the Vit D is easy..I will really work on the Magnesium...think the oil spray, baths and lotion is probably the easiest and safest way for me to go about this...just need to do more of it.

Laine (Hockey Mom)

[tex]

Laine,

I agree with Brandy. When the going gets really tough, and what used to work no longer works, we have to reassess the situation and do something different. Naturopathic practitioners can be very helpful, but IMO their main drawback is the fact that as a group they tend to go overboard with prescribing supplements. Apparently that approach must be helpful for other health issues, but it is almost always counterproductive for treating difficult-to-treat MC cases. What works for Crohn's disease and UC for example, often does not work well (or may even make symptoms worse) for MC.

Above all, when treating MC, less is more. This applies to supplements, diet, work, play, and virtually everything else in our recovery environment. IOW our accumulated experience shows that as a rule, the fewer supplements we take, the more likely we are to recover, and the sooner we will recover. After we are in remission, we are much more likely to be able to tolerate more supplements, but when we are stumped, and nothing we try seems to help, supplements may not be our friend unless they are necessary because of a life-threatening issue.

So while cutting out magnesium glycinate may have been a prudent move, replacing it with a combo supplement was almost surely a step backward. Many a recovery program has been sabotaged by supplements recommended by well-meaning (but not MC-savy) naturopaths, MDs, friends, family members, complete strangers, Internet websites, or TV commercials.

That said, it's true that stress is a primary cause of the inflammation that perpetuates MC. And stress depletes both vitamin D and magnesium. So if we take any supplements during recovery, they should be vitamin D and magnesium. Magnesium glycinate is a much safer source of magnesium for MC patients than magnesium citrate. But if I were in your situation, just to touch all the bases, I would avoid magnesium supplements for a few days to a week, to see if it makes any difference. It might be the key that opens the door to remission.

IMO, if we can't at least control our stress level enough to keep it out of the stratosphere, we're probably not going to be able to control our MC symptoms no matter what else we do.

I hope that some of these random thoughts may be helpful.

Tex

[HockeyMom]

Thanks Tex...
I appreciate your input and all your accumulated wisdom with this condition. I truly wouldn't have been a functional being from 2011 until now without this board. It was a blessing I found it then.

I think I will drop to just the Vit D and magnesium topicals for a while. I posted earlier that I started supplements for fat solubles a few weeks (if not a month) ago due to taking the cholestyramine and not wanting to have those get depleted...your thoughts on this? Gabes also mention B12 with the cholestyramine. Naturopath took me off my B complex months ago so have only had B in some form in that supplement with the mag citrate in it.

I really am trying to destress my life. But that's easier said than done when you aren't sure if you are going to be able to remain in your home, you are selling things off you don't need/can't afford any longer, and you are wrapping up legal/financial matters. I will admit to losing alot of sleep wondering what exactly will happen to me if this MC goes completely sideways like it did initially and I can't work any longer!!! That terrifies me.

I really don't do anything anymore other than go to work, come home and exist due to feeling so crummy. In hindsight I bet some of this is magnesium related...will get to work on trying to topically get that up. I used to be a fairly serious bicycle rider who worked out alot also but haven't done anything other than take walks for an hour or so in the past few months!! Think being such a slug doesn't make me feel any better either.

Anyway, just chatting with everyone who understands this has helped me refocus my energies and has raised my mood! I will keep putting on foot in front of the other and soldier on...

Laine

[crervin]

Laine,
I just want to add there are vitamin patches (patch md) that I've been using due to MC plus IC. I so hope you can get your MC under control! You will be in my thoughts and prayers!