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, Moki.

  Well, come on over, bring the cheese, you know I have the 'whine' and bring everyone else in the forum. I have enough 'whine' for everyone!

  Thank you, I am glad I posted, everyone has given me a lot of good suggestions and believe me, I am taking them!

  I am so glad your Mom is doing well now. Your Dad was brilliant to think to boil some good cuts of meat and make your Mom a broth from it. I believe her doctor was right, your Dad saved your Moms life. I think that is an excellent idea, and I appreciate you're telling me about it.

  Thanks, Moki, you are a gem.

  Hugs,
  Sheila

[yorkieville]

Hi, Sunnytoday.

  It is very nice to 'meet' you. I tend to come and go, when I am too sick, I cannot post, but as soon as I am strong enough, I hurry up and post, before I am too sick again. My D.O. seems to feel my stomach is moving as it should, because the Nurse Practioner prescribed Reglan a year ago at Pain Management, and it emptied my stomach too quickly and did nothing for the lower intestines. (Also caused me a lot of swallowing problems. It was not pleasant.)

  I have read about gastropareis. does your doctor know the cause of it, in your case? I feel so bad that you have it.

  My husband and I were talking this afternoon, and we both think this nausea began when I started the Bowel Program. I couldn't eat, I was so nauseated. So, I think I need to retrain my stomach to accept food again. But I had lost weight before the program, as well.

  I just started Amitiza last week. And I think it is causing nausea, as well, but I do need to adjust to it so it forces my bowel to move, until I get a diagnosis as to why I have no function. My D.O. said it would be easier on my system than the harsh laxatives he had me take during the program.

  I can handle milk, so I drink milk and eat pudding and ice cream. My friend that is a retired nurse advised me to eat whatever I could eat without getting nauseated, just to get something in my stomach, and then we 'd work on nutrition.  She said once I can eat a small amount every 3-4 hours, without getting nauseated, we will move on to more solid foods.

  Wow. You lost 25#s. Now that is really scary. I dont think I have another 10 I could lose.

  I will check Wal*Mart tomorrow for Boost or the Wal*Mart brand. Thank you for the suggestion.

  Thank you for the hugs & prayers.

Hugs,
Sheila

[Quixotic1]

Okay, Momma Bear is hearing that you are "bearing the responsibility" for getting the weight back on.  I don't think that is right.  I'm very glad you are trying, but you are in a state, as someone said, where your body is digesting itself.  You need very close professional monitoring!!!!!!!  At some point, forcing in the wrong kinds of food can actually harm you further!

You need a doctor to see you naked! (what an bizarre thing to say,lol)  But, get Rich to read this thread.  I repeat, get Rich to read this thread and hear our concerns.  I would say get into your DO as an emergency.  Fib and tell him you fainted.  Or "faint" and call 911!!  Do you get my drift?  The ER will see the problem and call your DO.  I really want to hear that you have seen a doctor by tomorrow.  You need an EEG, a chem panel, and a PLAN - YESTERDAY.

You have too medical people telling you this, a nurse who is superbly versed in nutrition and a physician.  Please listen to us!

Rich, we want to hear that someone is doing something!  Please.

Yes, I am being dramatic, but it is my right as Den Mother!

Momma Bear, MD

[mokibear]

I've got the cheese!!!!  When do we start? LOL

Don't ever be sorry for worrying us my friend. That's what we are here for. I'm just so happy that you posted and let us know what was going on with you.

My Mom is doing really well now thank you. It took some time and some adjusting for her and her new diet but she is thriving and doing well again. When you mentioned not being able to eat meat right now it brought something back to mind. My mom before she was diagnosed was going down so bad that my father knew he had to try to get some nutrition in her. He boiled some really good cuts of meat and made a really heavy broth from it.He also pureed a lot of veggies for the same reason. She got a lot of her proteins and vitamins this way and being liquid, it absorbed quite quickly into her system. The doc who diagnosed her said that this probably helped to keep her alive. It's just a thought that may help you until you can eat more.

Sending prayers and more gentle hugs your way,
Moki

[yorkieville]

Hi, Moki.

   It's good to be back posting, even though I brought my 'whine' with me. Maybe someone else will bring the cheese.

  Forgive all of you for worrying? I am grateful for you and the rest of our family here. I am just sorry I have everyone worrying.

   I know that Celiac is a devastating, lifelong auto-immune diesease. I can relate to how scared you and your Mom were prior to her diagnosis. It's a very limited diet, and eating out is practically impossible. Is she feeling well now? I do hope so!

  I am eating 1 extra large egg a day, for the protein, as I cannot handle meat. And I am drinking milk, and getting it in pudding form. I suspect, if I can just get my stomach used to small amounts of food, every 3-4 hours, soon, I will regain my appetite. But I know I need to see my G.I. doc to diagnose what is happening.

  Moki, thanks for being here for me.

  Hugs,
Sheila

[Sunnytoday]

Hi, I don't think we've formally met on here... I've just read this whole post and feel for you.

I don't know if anyone has ever mentioned this to you, but with all of your lower digestive trouble, there's a possibility the stomach isn't "moving" as it should either.   I have gastroparesis- where the stomach nerve is either damaged or isn't working correctly and the stomach doesn't operate correctly. I only mentioned this becuase of all the nausea you are experienceing.

There currently isn't any treatment for this except for IV nutrition, however, the best way I've found in the past years to handle it is to eat small meals (just like you are doing) EVERY three hours just like you are now doing, and if you are taking something like Miralax, eating foods such as jello, ice-cream, soups, and pretty much anything else you like that doesn't have a lot of fiber or ruffage will definetly help.

My prayers are with you- I dropped 25 lbs. several years ago, and it's frightening... please don't let it go any further.

I hope that you've found a nutritional drink, I drink Ensure becuase I can't have milk but if you look I think there are others avaliable that don't have soy- I know Boost is a milk based drink and Walmart has their own brand, they both would either be soy free or at least contain less than Ensure. This helped me gain back 12 lbs.

Hugs and prayers,
~Sunnytoday~
(limbo~lander)