Round and round I go

Lesley · Post by **Lesley** » Wed Mar 05, 2014 11:18 pm

And where I stop? Anyone's guess.

I have been chugging along with my usual struggle with C. I added a couple of foods from my mid range enterolab, almond meal and a little chicken stock in a veggie soup (vichyssoise, asparagus soup) for flavor, and found that with the on and off help of Dr. Schulz, I was managing a slightly more formed than soft serve, although not N, BM a day.
Then, on Monday, I was feeling pretty shi**y (pun semi intended), with a little gurgling and some cramp, after a 3 day no BM in spite of a couple of Dr. Schulz's, I was nervous enough to use a depends for the first time for a LONG time. And lucky I did because I woke up at 3.30 with a sinking feeling under me. Long story short - shower, bed stripping, struggling with (old) tempurapedic mattress cover, etc. etc. Feeling like I am refracturing my vertebra. Last time this happened was in Israel. I had one night like this, only worse.

Tuesday - still a couple of BMs, feeling weak and shaky. Today - feel as though my abdomen has been kicked by a horse. No gurgling, no BM.
Now what do I do? Back to lamb, potatoes, overcooked green beans, coconut products, a little agave syrup, baked apple, oats. D is now stopped completely, but I can feel the build up to C. Another couple of days without a BM and I will have to do something to get going.
And on and on ad infinitum?

As I said round and round I go.

MaggieRedwings · Post by **MaggieRedwings** » Thu Mar 06, 2014 5:59 am

Morning Lesley,

I feel for you and the most earnest way. You just keep trying and it seems 3 steps forward and then 2 backward. I can sympathize with you as it seems like a merry go round for me too at time - most of the time. A Norman was a short time visitor about a year ago and has not knocked on the door since. I pray that things will get better for you but I do know where you are at this time in healing.

Love, Maggie

ldubois7 · Post by **ldubois7** » Thu Mar 06, 2014 7:11 am

Lesley,

Have you cut out the oats to see what that does? What score is you have on Enterolab for oats?

Lesley · Post by **Lesley** » Thu Mar 06, 2014 11:23 am

Thanks Maggie. How are you coping with it? Do you have D constantly?

Linda - enterolab said I have zero reaction to potatoes and oats. Yes, I have gone long periods without oats without any effect. In fact I did a couple of weeks with ONLY lamb, potatoes and coconut milk. Same thing. Mostly C, and then, when I took some stool softeners, a couple of days of D.

My big problem is the C. Not knowing what, in particular, is causing it, and how to manage it, if it indeed caused by a specific food or group of foods. Sometimes I envision that the inflammation is working it's dreadful ways, I am having the non N BMs with more or less help, and then it simply explodes once a year or so because my gut is SO overloaded. I have no idea because nothing shows up. There is no sign like a reaction to a certain food causing D in any period of time, or anything I can link to a food for a reaction. The exhaustion is always with me, I get headaches, cramps, shooting pains etc., with no apparent connection to any particular food. I have tried writing everything down, but no help.

I think it's because of the almost total lack of motility of my bowel, which could be connected to PPS, Polly's suggestion. 2 1/2 years later, I have no idea how to deal with it.

BTW - I have added an old/new symptom. The itchy scratchies. Mostly lower legs and feet right now. I have had these before on and off. I had it on my upper arms and hands. I thought it was due to the water, so I put a filter into my shower. Now I am getting it more and more, and the ONLY thing that helps is using a little cortisone cream. I have given in and put some on because it can drive me NUTS (Zizzle - I so feel for you!) and keep me awake all night. I am taking Claritin reditabs daily (note to self - get more!). Not sure if it is helping.

Post by **tex** » Thu Mar 06, 2014 1:33 pm

Lesley wrote:I think it's because of the almost total lack of motility of my bowel, which could be connected to PPS, Polly's suggestion. 2 1/2 years later, I have no idea how to deal with it.

I agree with that. And years of having to take narcotic painkillers to deal with pain may have also left permanent motility damage, especially in combination with PPS (IOW, they may have amplified the problem). I wish I knew of some trick that might help.

I get that itching sometimes on my forearms and lower legs. I'm pretty sure that it's a histamine-based reaction related to something in my diet. I usually don't notice it until I'm taking a shower or getting ready for bed, and by then I'm usually too sleepy to think clearly, so I've never figured out that causes it.

You might get better results by increasing your antihistamine dose, or by trying a different brand.

Tex

Lesley · Post by **Lesley** » Thu Mar 06, 2014 2:27 pm

I have taken Kroger's long lasting pain relief pills when I am too overwhelmed by pain. Doesn't happen often because my pain threshold is, to quote the docs "dangerously high", but sometimes I have to do SOMETHING. I just consulted my MRT and saw that Acetaminophen is high yellow on the list of chemicals, way higher than anything else.
There is nothing I can take even to take the edge off. Nothing. This is SO discouraging.

Thing is, as with everything else, I don't have an immediate reaction. I have NO idea how much it contributed to the latest flare, especially since I fell in September last year, and have taken two maybe once a week since then.

ldubois7 · Post by **ldubois7** » Thu Mar 06, 2014 2:43 pm

Oh Lesley, I wish I could help you catch a break! Maybe back to a simple diet again....
I use aloe on my itchy spots, and it helps cool the itch, and has anti-inflammatory properties!

Lesley · Post by **Lesley** » Thu Mar 06, 2014 5:40 pm

Oh shoot! I KNEW I forgot something while at the store. Aloe! I meant to buy some and potato chips, and forgot both.

I have gone back to a very simple diet. I listed the 7 foods I am eating right now. Only things enterolab AND my MRT sanctioned. I have no other means of figuring out to what I am sensitive. Which is why I wish I could afford to do the latest enterolab tests to get more foods sanctioned or thrown out.

wmonique2 · Post by **wmonique2** » Tue Mar 11, 2014 4:55 pm

Hi Lesley,

Don't know what to say except that I really feel for you. I wish you could get a break.

You know I am sensitive to coffee and I never have any. The other day I had a bad night so in the morning I thought I'll have a half cup of half-and-half coffee. Well, wouldn't you know it. I had to go immediately. I'll know what to do if I ever get C.

Take care,

Monique

Jeanemcl · Post by **Jeanemcl** » Tue Mar 11, 2014 7:15 pm

Lesley,
Sorry things are so rough for you. I think you and I are the queens of potato chips!! I eat them all the time too. I hadn't eaten them since college until I got CC, but they go with me everywhere now!!

Hope things turn around for you soon.

Jean

Polly · Post by **Polly** » Wed Mar 12, 2014 6:56 am

Good Morning, Leslie!

I saw this online: http://www.medhelp.org/posts/Neurology/ ... nts_header

Check out the 6 comments on this post - there may be some suggestions for things you have not yet tried to relieve the constipation.

Also, there is apparently a knowledgeable a doc in N.J. listed who has a website. I think it was http://www.postpolioinfo.com/bruno.php However, in a quick check of that website, I did not see anything about altered gut motility.
It appears that your problem is common with PPS and that there is a dearth of docs who know anything about it.

Love,

Polly

Sheila · Post by **Sheila** » Wed Mar 12, 2014 7:23 pm

I read the link Polly posted and it seems that constipation is pretty common with PPA. Knowing the cause doesn't make it any easier for you but you know you're not alone. I hope you can find some help somewhere, Lesley. I feel so bad for what you're going through.

:bigbighug:

Sheila W

Lesley · Post by **Lesley** » Wed Mar 12, 2014 8:47 pm

Monique - Having a cup of coffee and getting to "go" when C is in residence is infinitely preferable and certainly tastier than any laxative around! I have been trying to adopt that principle when dealing with my C.

Jean - I would live to have shares in a potato crisp company! Which do you like?

Polly - many, many thanks for that. While, so far, there has been no real help for dealing with C effectively, especially when MC is in residence at least I know that it is a problem for people post polio, even if not officially dx'd with PPS, as well as it is with people with MC.
I am horribly dilatory re: my vitamins etc. I do take magnesium when I remember. I have to take calcium because or OP, but I forget it too. Basically it's not really so much forgetting as putting it off because of fear of triggering GERD. Then I forget.
Dr. Schultz really helps and gets me going, but what comes is NOT N, and hasn't ever been, at least not since a couple of years before my official MD dx.
After the night of the depends I went back to my 8 foods (sorry - I have been drinking coffee, which has never given me problems), and waited 6 days before finally taking a Dr. S. Not D, but not N. I have taken one today because it is now almost 5 days again, and the bloating is very uncomfortable. I think I remember Tex saying once that constant bloating stretches the walls of the gut till the never go back having permanently lost their elasticity.
I have just about accepted that this is it, the way I am coming to terms with my back pain not improving any more any time soon. It's better than the alternative.

Sheila, thanks for the hugs. I love them!

Jeanemcl · Post by **Jeanemcl** » Thu Mar 13, 2014 4:08 am

Leslie, I like the Cape Cod chips the best. Recently, I was driving and got really hungry, I grabbed a bag of chips at the gas station only to see that there was SOY in the ingredients when I got to the car. Is nothing sacred???

I went hungry and learned that old Boy Scot rule that day. BE PREPARED!

Martha · Post by **Martha** » Sat Mar 15, 2014 10:40 am

Dear Lesley,

I'm sorry you are still having such a hard time. I don't have any advice, just a big :bigbighug:

for you, my friend.

Love,
Martha

MICROSCOPIC COLITIS SUPPORT

Round and round I go

Round and round I go

Haven't used it much, but...

round and round I go