Neurological Bowel Problem

[yorkieville]

Hi, Everyone.

Well, I did the 4 week 'Bowel Program', and saw my D.O. last week Wednesday.

First, let me tell you, it literally kicked my butt!  I was so sick throughout the entire 4 weeks. Nauseated, and it made the pain of the Ankylosing Spondylitis unbearable.

But, (yeah, another but), I did learn some things; I have no rectal sensation; Bisacodyl suppositories produce no results, even after the two Bisacdoyl tablets the night before. I have very light intestinal muscle contractions.

Another thing, I discovered, is that stool slips from the rectum into the anal canal, and I do not feel it, and the outer muscle at the anal canal does not relax and allow evacuation.

So, when I went back to my D.O. last week, he said it is a Neurological problem and prescribed Amitiza.

The appointment was a total let down and I went home, so depressed, ready to give up. He was an hour and a half late, and I was not upset with him, but then he barely gave me five minutes.

I had counted on him either ordering tests, or referring me back to my Neuro or G.I. Doc; something more than writing a prescription.

My son called in the evening and he told me that it's time for fresh doctors, because all this one does is write me a 'script every month, masking the symptoms and not diagnosing the problems. He wants us to go forward with our move, and come down to S. IL, and start with doctors there. He said the doctors will refer me to St. Louis, IL, and he is sure they will diagnose me.

So, we are listing our house this week.

In the meantime, I made one more appt. with my G.I. Doc in hopes that he will know what to do based on the results of the bowel program will. I cannot see him until June Th.

So, does anyone know what tests I should expect him to order?  Any tests that might aid in a diagnosis of MS?

I cannot go on this way. I am down to 78#s and have no appetite. When I force myself to eat a small amount, in order to take my pain meds, I am nauseated.

Any thoughts are appreciated.

Sheila

[Super_sally888]

Sheila,

Am so glad to hear that things are heading in the right direction.

How are you feeling today.

I know why you're not going to the hospital and heeding Mama Bear's instructions, but that is a fallback if things are not improving very quickly.

Sounds like your neighbor is a keeper.

Keep us informed so we won't worry about you.

Hugs,

Sally

[yorkieville]

Hi, Elaine.

   Please don't worry....I do feel better today. I was actually hungry at 1:00 and had cheese & crackers.

  I just wish I could fast forward the Amitiza and get past the headache.

  Sheila

P.S. I hope this only posts once. It is getting embarrassing.

[monotreme]

Thanks for letting me know how you are Sheila.  Pedialyte is a good choice.  I am very relieved that your neighbor is there and knows the GI nurse and his associate.

Please check in with us.  We worry about you!!

Elaine

[yorkieville]

Hi, Elaine.

   My 'Home Care" nurse, Kay, (neighbor/friend) was actually here early this monring, and has me on Pedialyte. And NO butter cookies in the a.m. to get the pain meds down. Discovered they make me nauseous. She said rest in the morning,  intil I can eat some real food, and then, take my pain meds. My scrambled egg this morning did not make me nauseous. And, I was able to eat two hours earlier, than usual.

  She agrees, that I need more, with the bowel not functioning, and says I need to take the Amitiza, same time, each day, and no more skipping 2 days for ANY reason. (I got a good lecture this morning! The Amitiza had actually begun to work the first two days I took it last week, but then, I skipped it for two days, not wanting to have the headcache while my grand-babies were here.)

  On Monday, my dose of Amitiza increases to twice a day. And, we discussed how I felt during the Bowel Program; nauseous the days it was working, but then, very hungry for two days, then nauseous the 2nd time during the week I had to do the program, then hungry again.

  So, we determined that the bowel being full causes the loss of appetite and feel, once the Amitiza kicks in, my appetite will also kick in.

  She said if my appetite does not improve very quickly, she personally is going to call my G.I. Docs nurse, because she knows her from working in the hospital for 30 years, and  his associate is her G.I Doc. (Good to have a friend with some klout!)

  She was pleased with the food I charted, that I had eaten yesterday. And expects to see improvement each day, or else! (Believe me, she will see improvement, because I have experienced Kays, "Or else" in the past!)

  I actually had more strength this morning, when I got up. No stumbling around the bedroom.

  She is furious with my D.O. for letting me walk out of his office last week, with nothing more than a prescription. But she's been fed up with him for a long time.

  She's furious that no one has done any testing, after the Dynamic Proctography, to determine, why, the bowel is not functioning.

  She said she hadn't wanted to say anything, Sunday, when she came over to see my grand-babies, but  intended to discuss my weight loss with me when they left.

  Elaine, thank you from the bottom of my heart for caring so much about me. I cannot find the words to express the way it makes me feel.

  Hugs,
Sheila

[monotreme]

Good Morning Sheila,
    I have been doing some reading.  Also, when I used to work as a nurse, I took care of many patients who could not eat much due to medical problems and lost a lot of weight.  I also took care of severe anorexics.  So, that is why I am really worried about you.

  Although you are doing an excellent job of trying to eat small frequent meals, I am thinking that what would do you alot more good is trying to get a special IV fluid that has concentrated minerals, electrolytes etc.  I am worried that the bowel problem not being worked out will prohibit you from being able to eat what your body needs.

  Did your GI doctor leave a doctor on call while he is away??  Is there any way you and Rich would let me talk to his GI nurse??

  Please think about it.
  Elaine

  

  

[yorkieville]

Hi, Momma Bear.

   Rich said to tell you, that I actually ate 5 times today. But, I am taking your advice and not forcing foods that nauseate me.

  My retired nurse friend/neighbor actually said the very same thing to me today. She said if it nauseates me, it's not the right food.

  I need the Amitiza to kick in to force the bowel to move, because until it moves, it hurts to eat much. (I had started it last week Wednesday, but skipped it for two days on the weekend because it gives me headaches and I didn't want a headache when I saw my grand-babies over the weekend. It was only the 3rd time I have seen them since they were born 15 mos. ago, and I wanted to cherish every moment, and believe me, I did! They renewed my determination to crack the whip and make my doctros figure out what is wrong with me. They are being put on notice at my next visits, that they have until I sell my house to get it done, or I am going to East Saint Louis, IL and tell them they couldn't figure it out! Maybe I can embarrass them into action.)

  I promise, when my G.I. Doc comes back into town, I will see him. But, if I go to the ER, they will call my D.O. and he is the one that dropped the ball last week, and I don't trust him not to do it again. That's how it works here, they call your PCP.

  You are absolutely right, it is your right as Den Mother to be dramatic, and I am listening, I promise.

  Hugs,
  Baby Bear

P.S. This Bear is crawling into the Den and going to sleep. It's been a long day and I am soooooooo tired.