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

[yorkieville]

Hi, Heather.

   I'm sorry I haven't been around in awhile. Just hangin' out in the bathroom.....

   I'm not sure how to gain some weight right now, trying so hard to eat. I actually ate 1/2 of a peanut butter and plum jam sandwich and a half cup of milk for dinner and don't feel sick.  Feel too full, but not nauseous yet.

I can 'feel' the stool sitting on my pelvic floor, just no urge to move it. Although, as I said above, sometimes it moves into the anal canal and I do not feel that happening. It has to be 'forced' with laxatives, and now Amitiza, which still does not empty my bowel. :(

  Don't let yourself get impacted. If you feel that happening, you need to do digital stimulation of the internal anal sphincter muscle with a gloved hand. (Yeah, I know, gross.)  The longer stool remains inside, it deadens the nerves.

  Geez, I know more about my bottom than I ever wanted to know.

  Your Neurogenic bladder, do you need to push, to empty it? I am having that problem.

   Yes, it is all so embarrassing.

   Heather, thanks for the prayers, the encouragement...I do know you care about me and that means a lot to me. I care about you, too.

   Hugs,
   Sheila

  

[Barbie51]

Hi Sheila,
I feel for you.  I've had bowel problems myself.  Fortunately my neuro sent me to a great GI.  He told me Amitiza (given to me by my GP) was probably not the best and I was relieved because it made me crampy.  I take Citrucel and Miralax, both in powder form and both over the counter.  I'm doing much, much better.  Please keep trying get someone to listen.  If you really can't see your GI, maybe you could call DO and see if he'll let you try Citrucel and Miralax.  Good luck sweetheart.  I'll be praying also....

Barb

[Heather3418]

It is SO GOOD to hear from you, but not with this news.  My god girl.  How are we going to get you to put on some weight?  I can't believe these doctor's are letting you get down this low without some serious intervention.

I too, have the same bowel problems, but it comes in the form of "flair-ups."  I do not "feel" when there is stool in my rectum, until it is overfull, so to speak.  Sensitive subject I know, so everyone forgive me for being so blunt.  But this is a more common complaint among those with Neurological bowel problems than most people realize.  

To add to my bowel problem, I also have a Neruogenic bladder.  To help with the bowel problem I try my best to eat grains, roughage from veggies and take a stool softener twice a day.  Sometimes the stool is so large from not feeling it, that I dread the day when I know I will have to go to the ER to have myself disimpacted.  I just know it's going to happen.  Talk about embarrassing.  I'm sure you know what I mean.

Please keep us informed about your progress.  Please do all you can to get some calories in your, even if it means eating some forbidden high calorie that is guaranteed to slam your heart arteries shut....you have to get those calories in, so we don't lose you to wasting away syndrome.  Yes Sheila, I am that worried about you.  I care...can't you tell?

Hang in there honey.  God knows I am praying for you....

Big Hugs,
Heather

[yorkieville]

Hi, Elaine.

  Thank you for the suggestion, but I 'think' Ensure has soy in it and I can't have soy because I am Hypo/Hashi's and it interferes with absorption of my thyroid meds.

  No, I haven't been referred to a dietitian, because I don't think my D.O. is too concerned about my weight loss. He was an hour and a half late, didn't rush in to start his appts;, chatted with people in the hall, and then, seemed distracted when he finally came in to the exam room.

  I had the MRI of my liver yesterday, and they were pretty concerned about my weight. My Tech seemed more concerned and asked me a lot of questions.

  My G.I. Doc is out of town right now, but when his nurse calls me with the results, I will mention my weight loss to her.

  In the meantime, I am trying to eat higher calorie foods, and trying to eat things I like just to eat, rather than worrying about whether it's vegetables and fruit as I had done for so long, in order to get the bowel moving. I've started drinking whole milk with whatever I am eating. I seem to feel less nauseous when I drink milk, I noticed.

  I miss enjoying food. Over the weekend, we had some lovely Italian dinners from the local Italian restaurant and I was quite frustrated that 3 cheese ravioli made me feel stuffed.

  Thank you for the suggestions, I really appreciate it.

  Sheila

  

[monotreme]

Hi Sheila,
   Have you tried  the high calorie drinks like "Ensure"??  You need to get some major calories in you without all the bulk of food since you become nauseous when you eat.  Ensure is available in drug stores.  That is what we always gave to patients when they could not eat much.  It is high protein.

   Have you ever been referred to a dietician in a hospital setting?  She / he could give you some ideas on foods that are calorie dense but not overly fulling.

   Please find some way to get in nutrition.  It will become extremely unhealthy to get at a  lower weight.

  Is there any way you can call the GI doctor and tell them how much weight you have lost?  They need to fit you in sooner.

Elaine

[yorkieville]

Hi, SL.

I imagine you thought I fell off the face of the earth.

The bowel problem has been ongoing for a a year and  4 months. I've been bounced from one doc to another, still no answers.

I'm glad I described the problem well. Thanks for saying so.

I'm not sure what is causing the lack of appetite. I lose my appetite with the Ankylosing Spondylitis, too. And the bowel program made that flare, badly. The Amitiza does, as well, but I know the Amitiza is important to keep the bowel moving and keep the toxins out of my system.

Even before I lost my appetite, I was eating well, and the bowel was not functioning. I think I weighed 88#s in Feburary...so this weight loss has been rapid.

But I am really making an effort to eat a little bit of food, often.

I had an MRI of the lumbar spine 1/27/07 and it was clear. My Brain MRI's only showed 1 white matter lesion, but I do have 2 oligoclonal bands in my spinal fluid.

The process has been frustrating, and these doctors have x amount of time to figure them out 'cause I'm moving on with my life. We put our move off, a year already, expecting to get this diagnosed.

Thanks, SL, I'll talk with you later.

Sheila