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Good morning friends,
I just need to vent.
I'm in my fourth week of constant "D" and not getting much help. I have to be careful about going out on a windy day, I could blow away at 103 pounds.
I had been on Pepto-Bismol for 8 days (6 per day), it stopped the watery "D", but I was still going a lot and had a lot of nausea. I stopped that after finding out I shouldn't take it because of the salicylic acid in it. I have previously had a bleeding ulcer. So, now it's back to watery "D". Yesterday, I called my GI doc yesterday who of course was out. The covering doc said to take Immodium and call back next week. About ten days ago, I made the same call and he told me to take Pepto and it would turn around. This morning I woke up to it again and decided to call back. Of course my doc was not there and another covering GI doc said even though I had a bleeding ulcer in the past that Pepto would not bother me or cause a bleeding ulcer. I told him how my stomach felt. He said to take Immodium, Gas X because Immodium would cause gas, and Kaopectate and call back next week to speak with my doc. I also told him I had not eaten any gluten or dairy for quite a while. He said "do not change your diet unless you have been tested for gluten and have been found intolerant", but do stay away from dairy. He did want me to go to the ER to have my potassium levels checked.
I am waiting to see a new GI doc, but have to wait another two weeks. I keep calling them every week to see if they have a cancellation. They are going to get so sick of hearing from me, I'm surprised they don't bring me in just so they won't have to hear from me any more. LOL I need to stop this rollercoaster so I can get some energy back.
Well, I am back from the ER. It took 4 hours just to get the lab work done. Everything was perfect, so that was good. Other than that they couldn't help me.
OK, I feel better, I vented.
Nancy
Still not feeling well
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Nancy,
I'm sorry you're having such a tough time getting any beneficial advice out of your doctors.
Two weeks is a long time when you're sick.
That's good that your labs checked out OK, though. At least you have that going for you.
Tex
I'm sorry you're having such a tough time getting any beneficial advice out of your doctors.
Two weeks is a long time when you're sick.That's good that your labs checked out OK, though. At least you have that going for you.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Nancy,
I'm sorry that you're going through a challenging and difficult time.
I just looked over your previous posts and noticed that you have been thinking about getting tested through Enterolab. Have you made any further progress with the testing?
The other thing I noticed is that you haven't mentioned taking Entocort. Some members are opposed to trying it for various reasons, but those of us who have taken it have found that it gives us our lives back. Once the D has subsided, we are able to determine which foods are giving us a problem. Pepto Bismol is a very short-term solution and doesn't usually give a long enough opportunity to determine food intolerances.
I hope you can feel better soon.
Gloria
I'm sorry that you're going through a challenging and difficult time.
I just looked over your previous posts and noticed that you have been thinking about getting tested through Enterolab. Have you made any further progress with the testing?
The other thing I noticed is that you haven't mentioned taking Entocort. Some members are opposed to trying it for various reasons, but those of us who have taken it have found that it gives us our lives back. Once the D has subsided, we are able to determine which foods are giving us a problem. Pepto Bismol is a very short-term solution and doesn't usually give a long enough opportunity to determine food intolerances.
I hope you can feel better soon.
Gloria
You never know what you can do until you have to do it.
Hi Nancy,
I too am 103lbs so I know what you mean....you need to get a new Doc that takes you seriously. I, like you, got the runaround in the beginning, and that lasted for months. I became so ill, I thought I was going to die. You should get on Entocort and get your life back. If these Doctors won't give it to you then you need to get in to another Doc that understands your illness.
Also, you know it is ok to take pepto and imodium at the same time. The pepto pulls bad stuff out and the imodium slows things down. Stay away from gluten and dairy. Sorry, I just don't know what else will help without Entocort.
I hope you start to feel better soon,
karen
I too am 103lbs so I know what you mean....you need to get a new Doc that takes you seriously. I, like you, got the runaround in the beginning, and that lasted for months. I became so ill, I thought I was going to die. You should get on Entocort and get your life back. If these Doctors won't give it to you then you need to get in to another Doc that understands your illness.
Also, you know it is ok to take pepto and imodium at the same time. The pepto pulls bad stuff out and the imodium slows things down. Stay away from gluten and dairy. Sorry, I just don't know what else will help without Entocort.
I hope you start to feel better soon,
karen
Nancy, my thoughts are with you. I got my symptoms under control with pepto - when I first had this, it went on a long time and everything I tried didn't work. I wish I could bring you a vat of the chicken broth that's making my life work these days. And I hope with the other who have posted that you get help and support from your medical team, and soon.
Mags might have a good suggestion about ruling out C. difficile, too. I had C.diff in '97, probably the MC/CC was the 'real' problem - but it was quite a project to get rid of it. When my elderly mother had recurrent C.diff, I was a raving maniac about getting it under control - I ended up throwing out the ineffective probiotic and replacing it with one I'd researched, which I kept her on for the rest of her life. And she never had it again, after at least 3 recurrences that left her hospitalized and dehydrated.
I hope you get a break, soon. Am I remembering right that you have an appointment with a new doctor soon? Fingers crossed for you, in every way,
Sara
Mags might have a good suggestion about ruling out C. difficile, too. I had C.diff in '97, probably the MC/CC was the 'real' problem - but it was quite a project to get rid of it. When my elderly mother had recurrent C.diff, I was a raving maniac about getting it under control - I ended up throwing out the ineffective probiotic and replacing it with one I'd researched, which I kept her on for the rest of her life. And she never had it again, after at least 3 recurrences that left her hospitalized and dehydrated.
I hope you get a break, soon. Am I remembering right that you have an appointment with a new doctor soon? Fingers crossed for you, in every way,
Sara
Thanks for all the kind words. I knew I could count on you guys.
They didn't do a stool sample in the ER, I had that done twice last Sept. when this all began and everything came back negative, but I will bring it up when I go to my new doctor in two weeks. I imagine they would have tested for C. difficile at that time, but I don't know. I have great hope in him and will ask about medication while I'm there. So far, none of the doctors I have seen have wanted to give me any. My goal is to get on some kind of meds so I can get my life back. I can't continue to take Pepto Bilmol because of my intolerance to aspirin. It wasn't helping much and making me sick. It did work the first time I took it back in October, but not this time.
I received my Enterolab kid in the mail today and will hopefully be able to get it back on it's way at the beginning of the week. One question I have about this testing is - what if I only have watery stool, can I use that?
Hmmm, chicken soup - New York is only about 3 hours away. LOL
Oh, and this is strange, my 25 year old grandson is going through something like this too. I feel so bad for him. He lives and works in Boston and is going through a lot of testing right now. They have done blood and stools, and an endoscopy. Next is a colonoscopy. His girlfriend has ulcerative colitis.
Nancy
They didn't do a stool sample in the ER, I had that done twice last Sept. when this all began and everything came back negative, but I will bring it up when I go to my new doctor in two weeks. I imagine they would have tested for C. difficile at that time, but I don't know. I have great hope in him and will ask about medication while I'm there. So far, none of the doctors I have seen have wanted to give me any. My goal is to get on some kind of meds so I can get my life back. I can't continue to take Pepto Bilmol because of my intolerance to aspirin. It wasn't helping much and making me sick. It did work the first time I took it back in October, but not this time.
I received my Enterolab kid in the mail today and will hopefully be able to get it back on it's way at the beginning of the week. One question I have about this testing is - what if I only have watery stool, can I use that?
Hmmm, chicken soup - New York is only about 3 hours away. LOL
Oh, and this is strange, my 25 year old grandson is going through something like this too. I feel so bad for him. He lives and works in Boston and is going through a lot of testing right now. They have done blood and stools, and an endoscopy. Next is a colonoscopy. His girlfriend has ulcerative colitis.
Nancy
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Joefnh
- Rockhopper Penguin
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- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Nancy I'm sorry your not feeling well. Your current doctor sounds awful. I can say for certain Dr Nagri dopes not treat patients like this. His nurse Cindy is incredible as well. I am sure you will be much happier working with him, it's too bad that you have to wait a couple of weeks. Did you ask to be put on the cancellation list in case an appt opens up?
Waiting for treatment is the toughest part I do hope you ar feeling better soon.
Joe
Waiting for treatment is the toughest part I do hope you ar feeling better soon.
Joe
Joe
Sure. In their business, you can bet that they see plenty of that.Nancy wrote:One question I have about this testing is - what if I only have watery stool, can I use that?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, that is good to know, now I can move along with that process.
Joe, I am on the cancellation list, but it doesn't seem like anyone cancels. I called on Friday and with the storm going on I thought someone might, but they didn't. I'm going to try again on Monday, I don't want to be a pain, but . . .
Even the nurse in the ER said she would definitely move out of the area for a doctor. She and her husband go to one at the Brigham and they have gotten a lot of help.
Nancy
Joe, I am on the cancellation list, but it doesn't seem like anyone cancels. I called on Friday and with the storm going on I thought someone might, but they didn't. I'm going to try again on Monday, I don't want to be a pain, but . . .
Even the nurse in the ER said she would definitely move out of the area for a doctor. She and her husband go to one at the Brigham and they have gotten a lot of help.
Nancy
Nancy,
I live in a small town that measures the quality of it's healthcare by the grandeur of the hospitals they have built, not by the quality of the care delivered by empathetic doctors (which we sorely need). So I understand your dilemma. I have had to find a GI doctor 2 hours away in Indy who has any sort of sense. Locally, I am seen by a colorectal surgeon who has a great bedside manner, and, who ultimately diagnosed my disease. Other local doctors turned me away, ignored me, mistreated me, or said it was IBS or all in my head. Someday, I will find a new local GI doctor, but for now, I will have to continue to muddle through.
Good luck finding anyone who can spend some quality time with you. I agree with Tex that our doctors, in most cases, are simply our instruments to get scrims filled. The rest, is up to us.
Rich
I live in a small town that measures the quality of it's healthcare by the grandeur of the hospitals they have built, not by the quality of the care delivered by empathetic doctors (which we sorely need). So I understand your dilemma. I have had to find a GI doctor 2 hours away in Indy who has any sort of sense. Locally, I am seen by a colorectal surgeon who has a great bedside manner, and, who ultimately diagnosed my disease. Other local doctors turned me away, ignored me, mistreated me, or said it was IBS or all in my head. Someday, I will find a new local GI doctor, but for now, I will have to continue to muddle through.
Good luck finding anyone who can spend some quality time with you. I agree with Tex that our doctors, in most cases, are simply our instruments to get scrims filled. The rest, is up to us.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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TooManyHats
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- Location: New Jersey
Nancy,
I am so sorry to hear that your doctor doesn't take you seriously enough to give you medication. I know that Immodium and Pepto did nothing for me. The diarrhea just raged on.
If you HAPPENED to wind up in the Emergency Room before your scheduled doctor's appointment, you could always request to see Dr. Nagri. You might wait longer in the ER, but lots of times private doctors do see patients that come into the ER.
((HUGS)) I know the pain and frustration of being sick for so long!
I am so sorry to hear that your doctor doesn't take you seriously enough to give you medication. I know that Immodium and Pepto did nothing for me. The diarrhea just raged on.
If you HAPPENED to wind up in the Emergency Room before your scheduled doctor's appointment, you could always request to see Dr. Nagri. You might wait longer in the ER, but lots of times private doctors do see patients that come into the ER.
((HUGS)) I know the pain and frustration of being sick for so long!
Arlene
Progress, not perfection.
Progress, not perfection.
Thank you all for the kind and caring words and great suggestions. It really does help me feel better just hearing from all of you.
A strange thing, I was feeling so weak and had been off most gluten for a couple of weeks. I know I wasn't eating right. On Sat. after getting back from the ER I decided the heck with it and ate some saltine crackers and a toast (not gluten free). Yesterday and today I also had toast with my scrambled eggs and spread some peanut butter on crackers and yesterday, no D, felt a little stronger, today Norman visited. I am definitly staying away from dairy and still getting ready for the Enterolab testing. Today I feel great (hope I don't jinx myself) and going to play Mah Jong with my lady friends this afternoon. One thing I also added on Saturday was Aloe Vera Juice. I take an ounce three times a day and if that doesn't effect me I am going to try adding Slippery Elm. I don't want you to think I just eat toast and crackers, I do have my regular dinners at night such as, meat, well cooked veggies, potatoes, etc. I was down to 102.5 lbs on Sat. Who knows what tomorrow will bring, so I must enjoy today!
Nancy
A strange thing, I was feeling so weak and had been off most gluten for a couple of weeks. I know I wasn't eating right. On Sat. after getting back from the ER I decided the heck with it and ate some saltine crackers and a toast (not gluten free). Yesterday and today I also had toast with my scrambled eggs and spread some peanut butter on crackers and yesterday, no D, felt a little stronger, today Norman visited. I am definitly staying away from dairy and still getting ready for the Enterolab testing. Today I feel great (hope I don't jinx myself) and going to play Mah Jong with my lady friends this afternoon. One thing I also added on Saturday was Aloe Vera Juice. I take an ounce three times a day and if that doesn't effect me I am going to try adding Slippery Elm. I don't want you to think I just eat toast and crackers, I do have my regular dinners at night such as, meat, well cooked veggies, potatoes, etc. I was down to 102.5 lbs on Sat. Who knows what tomorrow will bring, so I must enjoy today!
Nancy