Aa
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
Oh, and stripping off in front of your DO to show him how thin you are now, aint altogether a bad idea.
S
S
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
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
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
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
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
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
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
Maybe if he saw me naked, he might realize I've really gotten skinny. Dressed, I look ok, I guess, to him.
Hugs,
Sheila
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
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
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*
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*
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
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
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
