Neurological Bowel Problem

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

[sllowe]

Been wondering how you've been!

Oh boy, I "hate" the script writing drill.  Not that it's a bad thing when it's something that can be fixed, but it's bad when you need to know what is causing it!

I don't know enough about the bowel, but you did decribe it well, really you did.

Honey, you have to introduce food slowly in order to get your belly back on track.  Think you are feeling sick because it's shrunk up.  You can get it back, but you have to tread lightly.  Saltines, then an hour or so later, 1/2 banana, then 1/2 a sandwich, then later on some veggies, etc.  

That's what worked for me.  I didn't go near as low as 78's, but didn't have an appetite due to throat/swallowing issues.  It took me a long while.  I still have problems now, especially when I put in too much at one time.  Still feels like it's in my throat.

I think going back to the GI is a good thing and the Neuro - it's essential.  Someone should shed some light on the problem a little more.  

I hope too, by introducing things slowly, maybe it will help w/the bowel.  Can't hurt right?? It's a process, as you know, the stomach, the intestine, and then the bowel.  Eating properly isn't going to fix the Neuro problem, but it may contribute to the stimulation.

The next Doc should be giving up some info on the spinal cord, your Neuro bowel issue and those "typical" things that occur involunarily to make normal movements happen.  And, why yours in NOT.  Do you have spinal lesions?

This process must of been a nightmare.  Talk to you soon, wish you were feeling better. .
-SL

[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

[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, 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

  

[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

[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

[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

  

[yorkieville]

Hi, Barb.

  Crossing my fingers this only posts one time.  I only hit 'post comment' one time to answer Heathers post and it entered 4 times. Not having a fun day.

  My D.O. originally had me on Citrucel & Miralax, but I was still not emptying my bowel. So, then we did the 4 week Bowel Program, and I really expected he would refer me back to my G.I, Doc or my Neuro, but instead, he prescribed Amitiza. So, I made an appt. with my G.I. Doc for June 10th.

  There is some underlying reason that my Dynamic Procotography showed that I have no bowel function. The doctor that did the test told me that my body is shutting down and my doctors need to find out why. Instead, my D.O. just writes 'scripts.

  Thanks for the suggestions and esp. for the prayers.

  Hugs,
  Sheila

[monotreme]

Hi Sheila,
   I will check at the drugstore tomorrow to see if there is a high calorie drink that you could try without soy.  I have Hashi's too.  But I think that if you space out the Ensure from the thyroid medicine by a few hours it will be fine..

  Soy can hurt the thyroid in healthy people, but in the case of hashimoto's, your thyroid is already destroyed so it does not matter so much.

  If you don't mind, I'll get back to you tomorrow.  I used to work as a nurse so I am very worrried about your weight.  I am a worrier by nature!!!!

  Take care,
  Elaine

[yorkieville]

Hi, Elaine.

  Thanks. I take 50 mcg. Levoxyl & 12.5 mcg. Cytomel at 6:00 a.m. and another 12.5 mcg. Cytomel at 6:00 p.m.

  My D.O. says even though with Hashi;s my thyroid is dead; not to eat/drink soy because it interferes with the thyroid replacement absorption.  But do you think it would be ok, if I drank it,, say, 4 hours away from the meds?

  Thanks for worrying about my weight. I don't like it very much. Last time I weighed 78#s, almost 19 years ago, I had a bowel infection, & my former G.I. Doc hospitalized me and fed me with an IV.

  But please don't worry too much, I'm a fighter! I am going to beat this thing, whatever it is.

Hugs,
Sheila

[Barbie51]

Hi,
I read your post to Heather where you asked if she had to push to empty her bladder.  I also have neurogenic bladder and I have a very difficult if not impossible time "pushing" the urine out, no matter how full it is. Ten years ago I learned to use a catheter and use one now every time I have to urinate.  It makes my life much, much better than before.  I used to frequently not be able to make it to the bathroom because I was so "full" all the time.  I know you'll beat this thing.  
In my thoughts and prayers...
Barb

[Quixotic1]

Honey, I am very worried about your weight loss.  78lbs is getting into the danger range for a woman.  The consequences can be fatal.  Your DO who is trained to have a more holistic approach to the whole person should be all over this!  You may need a central line and some parenteral help.  Someone needs to be seeing you every few days and be checkeing your blood chems.

Strongly request a referral to a dietician.  The dietician should sound an alrm to your doctors.   A quick 10lb weight loss at this weight terrfies me!  Please, maybe your DO just wasn't thinking.  Write up a short note and remind him how fast your weight is dropping and ask if this is really okay!!!  Do the same to the jackass GI doc.  Please, some one HAS to intervene!

I'm worried, Kiddo.  And I feel helpless here.

Quix

[yorkieville]

Hi, Barb.

   So far, for the most part, I can still urinate normally, but then, I have to push to empty. I think I am at the beginning of the neurogenic bladder.

  Self cathing sounds as much fun as digital stimulation.. NOT!

  Thanks for the vote of confidence, I have to beat this thing.

  And thanks for the prayers...

  Hugs,
  Sheila

[yorkieville]

Hi, Momma Bear.

   Please don't worry. Rich is home with me 24/7. (And monitoring every bite I eat, even though he thinks I don't see him.)

  My D.O. had delivered a baby boy the morning of my appt. and I think he was very distracted. No excuse, I know. I suspect he 'thinks' I am not eating well, due to the constipation, but that is not the case, I am just nauseated and not hungry. A few bites make s me full. I did tell my Tech that on Monday when he did the MRI of the liver. So, I am hoping he came up with something for my G.I. doc.

That was why I made the appt. with the G.I. Doc, I know this fast weight loss is not good. It worries me, too. I get on the scale, hoping and praying I've gained.

  I do intend to point out to my D.O. that I have lost 10#s since the end of  February. I was at my sisters up in N. IL then and I believe I weighed 88#s and she was upset about that...good thing she hasn't seen me since.

   Please don't worry...Gods got it under control, even though my docs don't.

   Hugs,
  Baby Bear



  

[sllowe]

Hey,  you keep on working at it.  You'll get some lbs on, I know it.

I will pray for the right solution to the bowel problem.

So VERY VERY glad to hear about the Dietician! They are the BEST!!!!!!!  Hope you get a good one who works with what you can and can't have, along with the things you like too.  A good one will get in those things you like, but may add or change quantities, or combine a different food group w/some.

thinking about you,
SL

[Super_sally888]

Hi,

wow, now we're all worried about you.

I think that worrying about the soy in ensure is the least of your problems now.  If it does affect your thyroid meds, all you have to do is increase the dose.

High calorie fluids may be the way to go for now as well as whatever foods you can.  Soft drink and fruit juices instead of water all the time.  Milk is great - drink that instead of water!  Can you handle ice-cream.  Regular fat yoghurt.  Try to eat constantly small amounts.

If you're feeling so nauseated it can also be because your stomach has shrunk, which doesn't help anything.

Can you manually help yourself have BM.  Pressure on the perineum using your hand/fingers can help.

See if you can see the GI doc sooner.

Take care sweetie and fight this with everything you've got.

Sally

[Super_sally888]

Oh, and stripping off in front of your DO to show him how thin you are now, aint altogether a bad idea.

S

[monotreme]

Hi Sheila,
  I will be leaving shortly for the drugstore and will get back to you.  Please, call the local hospital outpatient services and ask to see a dietician today.  Or can you call the GI doc and ask them to see you today??  

  I was thinking exactly what Quix wrote.  I think you need an IV with nutrition.  Please Sheila, if you would like, I would call the GI doc for you and tell them I am your relative and a nurse and I think it is an emergency to get in to them today.  Your body could go into severe heart rhythm problems or anything.  

  Please pm with me with your phone number if you want and I will be happy to talk to you and call that doctor for you or even call the dieticians for you.  God has this in His hands I know, but sometimes he needs people to get the doctors to move their behinds into gear.  I think God is telling me to do that so I will be happy to help.  

  When I get back from the drugstore I will post.

  Elaine

[yorkieville]

Hi, SL.

   I promise you, I am going to get the weight back on! I'm a survivor. Just wait, soon I'll be in here complaining I'm too fat.

  Hugs,
  Sheila

[yorkieville]

Hi, Sally.

   Please don't worry. I'm fighting hard!

   Last night, I ate whole milk pudding 1/2 hour before bed. This morning, I had a scrambled egg.

   Today, Rich is taking me out for an ice cream cone. Adn a walk in the fresh air to stimulate my appetite.

   I do the digital stimulation of the internal anal sphincter muscle with a sterile gloved hand, and the Amitiza is starting to work, but I have very weak intestinal muscles and no nerve sensation. Also, the external anal muscle does not relax so it must be forced. More than I ever wanted to know about my bottom. (Or anyone else wants to know, for that matter.)

  Still fighting the nausea hard!

  Sally, thank you so much for all the encouragement. I don't know what I would do without our family here. You guys keep me going.

  Hugs,
  Sheila

[yorkieville]

Sally,

   Maybe if he saw me naked, he might realize I've really gotten skinny. Dressed, I look ok, I guess, to him.

  Hugs,
  Sheila

[yorkieville]

Hi, Elaine.

   I rec'd and replied to your message.

  Thanks so much for caring about me.

   I'm force feeding every few hours, to stretch my stomach.

   Rich is taking me out in the fresh air, to help stimulate my appetite, and then he is taking me for ice cream.

   My G.I. Doc is out of town, but I should be hearing from his nurse soon with the results of the MRI of the liver and I will talk to her about the weight loss and get a referral to a Dietician. In the meantime, my neighbor and very good friend, is a retired head nurse from the hospital and she is coming over to go over my diet and help me choose foods that won't nauseate me further, and help me get some nutrition in.

  Thank you so much for all your care and advice.

  I don't know if anyone in our family here, knows how much I love and cherish each and every one of you.

Hugs,
Sheila

[Momzilla]

I'm glad you got my PM last night.  I guess ALL of us are worried about the same thing.  You know I feel like this is an urgent matter, and I do hope that you take it as seriously as we all do.

I don't mean to attack you, and I hope you don't feel like I am.  I just know that my right LEG weighs 78 pounds, and I think this is something that needs looking into now, for some kind of treatment.  

Love you much, and hope you;ll consider calling your GI for help.  Tell him all your relatives (we are your family!) are concerned.  I know Rich is looking after you, but it could be that he's just seen this happen so gradually he's not so alarmed.  Especially with your docs not responding.

Take care!

Love,

Zilla*

[yorkieville]

Hi, Chris.

   I do feel so grateful that everyone cares so much about me. You have no idea what it means to me.

   I do take it as seriously as everyone. I promise, because each morning, as I struggle to roll over to the edge of the bed, and then push myself up with my arms so that I can get up, and then once I am on my feet, stumble across the room...I know I'm in trouble.

   Then, when I can choke down two tiny butter cookies and a cup of coffee in order to take half of a dose of pain meds, and wait for them to kick in enough so I can shower...I have to look at this body, naked, in the full length mirror in my bathroom, and I know I'm in trouble.

  Chris, I know you are my friend, and I know you are not attacking me. I know you are scared for me.

  My G.I. doc is out of town, but his nurse will be calling me with the results of the MRI of the liver I had done on Monday morning, and I will tell her that I have lost 10#s since end of February. I just hadn't thought of it last week when I spoke with her.

  Chris, Rich is alarmed. He has personally watched me getting thinner and weaker. He's angry with my D.O. And he is one of the people that told me immediately after my appt. last week, to call my G.I. Doc. And I did call and remind them that they were supposed to schedule the MRI in March, and I made an appt.

  My neighbor & very good friend is a retired head nurse from the local hospital and she is available 24/7 to me. We've gone over a dietary plan, so that I am eating something every 3-4 hours as of today.

  So far today, I have had two butter cookies and a cup of coffee, an extra large scrambled egg, a small vanilla ice cream cone, and 4 oz. of fruit punch. In a few minutes, I am going to have some mashed potatoes and vegetables. And half hour before bed, I will eat 4 oz. of whole milk vanilla pudding. It's a start.

  Please don't worry.

  Hugs,
  Sheila

[mokibear]

It's so good to see you posting on here again Sheila but I am so sorry you are in such a bad way. Please forgive us all about worrying and yes I'm guilty of that too, but that is such a scary weight loss.

I'm glad to see you have  a plan of action for right now and are at least able to eat small meals more frequently.  Before my mom was diagnosed with celiac disease she went down to 84# and I understand completely how scary that is. Her body was literally eating its own muscle trying to get nutrients. Please, Please make sure that you are getting enough proteins and vitamins to keep the levels up. I know that there are some vitamins and minerals available in liquid form for easier absorption into the system. This might be something for you to look into until you get your weight back up.

Always thinking of you
Gentle Hugs
Moki

[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)

[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

[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

[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

[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

[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, 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.

  

  

[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, 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]

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.

   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.

[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, Sally.

   I see I am not the only one up, early this morning. :)

  I woke at 5, very achy. My upper arms feel as though someone with very large hands squeezed them very hard. They have felt that way for months and when I told my D.O. he joked that it was my husband squeezing me in the night. But I am actually looking forward to a cup of coffee when Rich gets up at 6:30. Usually the thought of it nauseates me, but I am ready for it today.

  I live 5 minutes from the hospital and if I develop any problems, Rich is taking me there, I'll have no choice.

  I guess I've lost confidence in my doctors. If Momma Bear could be my doctor, I would be well. When I see my G.I. Doc, if he has no clue, I am going to go back to my Gyne and ask hm to refer me to one in his area.

  My neighbor definitely IS a keeper. Actually, we have 3 houses around us, one on each side and one across and we all are great friends. It will be hard to move from here.

  Oh, Yay, I hear the coffee making, brewing!

  Hugs,
  Sheila

[julia111]

Hi Sheila! You've gotten some great support and advice here regarding your GI issues.

I wanted to share with you that I have been diagnosed with Gluten Intolerance.  It is similar to Celiac Disease - but is not the "full blown" disease.

Most people don't realize that that Gluten Intolerance can cause GASTROINTESTINAL problems as well as NEUROLOGICAL problems.

While you are waiting to see the dr. you may want to have your husband get you a few Gluten-Free foods to try.  

I wonder if you might have an easier time eating them and getting them down if you knew they would not cause any stomach upset or distress?

Most grocery stores carry some GF products these days.  A Natural Market of some type has better variety - also the internet has many glute-free stores.

I wish you luck and will keep you in my prayers!

Julia  
  
PS - Let me know if you do decide to try Gluten-Free and I will send you a list of some of the better tasting products that I've found.

[yorkieville]

Hi, Julia.

  I was tested for Celiac and my tests were negative, but I am beginning to think I may  be gluten intolerant. I'm noticing nausea after eating certain things.

  I actually have a number of Gluten free products in the house. I like Tinkyada Brown Rice Pasta.  And I like Pamela's Pancake& Baking Mix. The mix makes great banana muffins. :)

  I think you have brought up a good point.

  Do you think gluten intolerance could cause the lack of rectal sensation and the stool not moving through the lower bowel?

  I really appreciate your input.

And thanks for the prayers.

Sheila

[Sunnytoday]

Hey it's me again- sorry I've been busy- tonight the youth watched 27 Dresses together, it's a cute movie!

I wanted to let you know that I went on Amitiza for about three weeks last year and got violently sick after my lower intestine stopped working- this was after I had switched to Amitiza. My doctor actually found a slight blockage in my instines, they had let it get that bad and I was vomiting constantly.

I don't want to sound gloomy here, but seriously, I had to switch to Miralax, which is a lot quicker and yet is not like a laxative(is gentle and safe to use long term).

I just wanted to let you know that Amitaza caused nausea for me from day 1 and never worked for me for the lower intestines. Did tell your doctor that it isn't working, and that you would consider something else?

They never told me what caused the gastroparesis and Reglan didn't work (only made me ADHD). Oddly, my neuro thinks it somehow ties in with my current condition, whatever it may be- he "suspects MS".

You know that I'm praying for you... your story brings back so many memories.
Please keep us posted, and keep hoping...
~Sunnytoday~

[Super_sally888]

Hi Sheila,

going gluten free is a good idea for anyone with stomach/bowel issues.  Gluten is apparently quite hard to digest.

Gluten intollerance/Celiac testing is not an exact science.  If the results are positive then you definitely have it.  If the results are negative, doesn't mean you don't have it.

The best way to determine whether you do or don't have a problem is by an elimination diet.

I have never been tested for celiac/gluten intollerance, but my chronic diarrhoea stopped when I eliminated gluten.  Unfortunately I have not been so strict with gluten free diet and that may be contributing to my current tummy troubles.  

Gluten free is not so difficult, you just stay away from processed foods.... you can use the gluten free alternatives (tinkyada etc), or use naturally gluten free options like sweet potato, potato, rice, etc.

Gluten problems can affect people in many ways.  Some people never have GI issues, they only have skin rashes.  Some have no symptoms at all until they show up with bowel cancer and biopsy shows the damage, and some people with have major reactions with only trace amounts of gluten.  There aree some good celiac support groups for information, if you are interested.

I would somehow doubt that you have a problem with gluten seeing you are ok with dairy.  Often the damage that gluten causes, also results in problems with taking dairy.  The problems with dairy resolve when the damage from the gluten heals.

However, an elimination diet  / keeping a food diary to see which foods make you feel good etc. is a great idea.  If you are having food allergies this will also affect your body's ability to absorb the nutrients from your food.

Sorry this is so long.  This is an area of great interest for me.

Sally

[Super_sally888]

Hi again,

yes gluten intollerance/celiac can definitely cause neurological problems (including apparently changes on MRI), and is one of the conditions that should be ruled out when testing for MS.

Some authorities recommend that anyone with MS or neurological issues follow a gluten free diet.  Surely this diet won't hurt as gluten free diet when done properly is based on natural and minimally processed foods.

Now I need to take my own advice and get strictly back on my own gluten free diet.

Sally

[yorkieville]

Hi, Sunny!

    That does sound like a cute movie!

    I think today will be my 7th day in a row on Amitiza, and honestly, the Dulcolax tablets did more than this stuff. According to the Dynamic Proctography my bowel hasn't functioned on it's own in over a year. I know it gradually stopped working.

  I felt some nausea when I first started, but I don't seem too bad right now.
  I don't understand why, when I took it twice last week, the first time I got the big D within an hour, and now, nothing, since. I'm so disappointed, I think I'd rather have D than nothing.

  I've been on Miralax and Citrucel before the Bowel Program and it didn't help me empty.

  Elaine and I have talked about this and we think this bowel problem is tied in with whatever is wrong with me and we think MS, too. But I think I am going to have to get a lot worse before they diagnose me. :(

  On Monday, I am supposed to increase to twice a day, and if it still does nothing, I'm not taking it. I'll see my G.I. Doc and see what he wants to do. It's his specialty anyway, not my D.O.s.

  Did you feel achy when you took the Amitiza? I feel very achy for a few hours after I take it.

  Thanks so much for telling me how you reacted to it and it didn't help you. I won't  count on it working.

  Thanks for the prayers, I think I really need them now.

  Hugs,
Sheila

[Heather3418]

You are in the prayers of all of us.  You have a very complicated situation on your hands and going through trials and errors of medication, takes time.  Time your little body doesn't have.  There has to be something they can do in the meantime to make sure that you don't lose any more weight.  That seems to be the most important thing.

If the nerves the supply the intestines and the lower bowel and rectum are not working properly, do they offer you any hope with drugs that you can reverse this situation?  My little niece had this problem and they did nerve testing of her rectum and found that it wasn't responding to nerve stimulation at all.  We frequently had to carry her to the hospital to be dis-impacted.  The poor little thing.

We poured Milk of Magnesia down that little girl's throat everyday.  That was the only way we could get her to go to the bathroom.  When her bowel problem became bad enough to take her to the hospital, we found out that she was actively trying to NOT go, since the stool had become so large that she couldn't' pass it on her own.  It was a merry-go-round situation.  She too began to lose weight, since it actually hurt her belly to eat, since her intestines were full of stool.  It becomes a vicious cycle.  I think you know exactly what I mean.

I hope they can find something to get you back on the road to full recovery soon.  I'd gladly give you some of my weight, if I could only do that.

WE are thinking of you and praying sweetheart,

Heather

[yorkieville]

Hi, Sally.

  My Neuro did test me for Celiac, but I read somewhere, recently, that often the blood tests are negative and the only way to get a correct diagnosis is a biopsy of the small bowel.

  I actually belong to a Celiac group because years ago, my D.O. thought I was GI, but then my G.I. Doc said "no", the test was negative,  and told me to go home and eat a normal diet because I was too thin. Ha! I was 90#s then, wait until he sees me at 78#s!

  No, I have no problem with dairy. I can drink milk, eating pudding made with milk, ice cream, etc.

  As a rule, everything I eat is homemade....although yesterday, for a short time, I thought I wanted a hot dog...I RARELY eat hot dogs, junkiest of junk foods. Then, later, I didn't want a hot dog, so I gave them to my neighbor for her grandkids. My body usually requests veggies, and fruits, no meat. My D.O. insisted last month that I eat 6 eggs a week for the protein. If I eat dessert of any kind, I make it. And I only use cake flour, which is low gluten. Or we have a bakery that does make butter cookies with only butter, sugar, flour, and egg, no preservatives, etc.

  I think going back on a gluten free diet sounds like a good idea. I really didn't mind it at all, when I was on one.

  So, I'll go gluten-free if you promise to get back on your gluten-free diet. Deal? :)

   Hugs,
  Sheila

[Sunnytoday]

Good luck with gluten-free, i admire anyone who can stick to that! I tried it for two weeks and about went bonkers! Of course, since then I can't eat preservatives, dyes, chocolate, tree nuts, or milk so I've learned to be more careful and I usually bake all my food or carefully check the ingredients. :)

As far as the amitiza, I felt achy after taking it too, I think that a side effect perhaps. I had to switch to it after they pulled Zelnorm off of the market- it had worked like wonders for me, and I mourned the day it was gone! My GI doc kept telling me Amitiza works wonders too and it just needs more time but after a few weeks and getting so terribly sick- I said that was enough, give me something that DOES work! I thankfully didn't lose the 25# in a few short weeks, it took a summer to do that- but I never dropped below 100, that was all i had to lose besides bones according to my mom!  
Have a wonderful day!
~Sunnytoday~

[yorkieville]

Hi, Heather.

   I hope I can post. All morning, when I try to post here, my computer locks up. :(

   Heather, I am so grateful for everyones prayers. My body is in trouble and I know it.

  So far, no one has done any nerve testing of the rectum, and I am seeing my G.I. Doc on June 10th and request he start testing. I cannot lose any more weight. I am going to tell him my Neuro needs more evidnece to aid in the diagnosis.

  Oh, your poor little neice. Please tell me, is she better now? Oh, I pray she is healthy and happy now! Little ones should not be sick!

  So far, I have been careful not to allow myself to become impacted. My Home Care Nurse had discussed a program with me back in Oct.? when I had the Solu-Medrol Infusions and explained to me that it was important to remove stool, manually with a gloved hand, if I could not pass it.  

  Rich is getting so fed up with the doctors here, and I am hoping my G.I. Doc will take my sudden weight loss seriuosly, when he sees me.

  I would gladly take 17#s from you. I don't want to be greedy. :)

  Thank you for your continued prayers.

  Hugs,
  Sheila

[yorkieville]

Hi, Sunny.

   I think I can do the gluten-gfree right now, since I really have no appetite. But, if I couldn't have milk, I'd go bonkers, too, because I am only surviving because I can eat pudding, ice cream and drink milk.

  You Mom must have been terrified when you lost 25#s. I can understand how she felt, I don't have any more to lose. At 78#s, I am skin and bones.

  The Amitiza is beginning to work, slowly, although I still do not empty. And the movement is making my back ache, unbearably. The bowel program did the same thing.

  I have been very nervous and jumpy this morning.

  I suspect my G.I. Doc will take me off the Amitiza when I see him June 10th, and run tests. Actually, I am going to tell him he needs to run tests so that it can aid in my diagnosis.

  I cannot live in LimboLand any longer.

  Hugs,
  Sheila