Thanks a lot Rose. God bless you.
Thanks a lot Rose. God bless you.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I had the colonscopy and gastroscopy on wednesday afternoon. Was one of the toughests. If I had crazy diarrhea before I dont have words to describe it after the preparation. It just refuses to stop. Even long after I stopped drinking. It continued 10 min before the procedure and right after. At least when I woke up from the sedation I knew that my beautiful dr. Phil was with me. I felt his sweet presence watching over me.
The dr. Didnt see anything special. He took biopsies. Will wait for answers.
The super crazy diarrhea continued until it woke me up at night between Thursday and Friday. So I took 30mg pred and went back to sleep. In the morning I had only twice. But now, Friday night, about 22 hours after the pred I got another super crazy diarrhea. I have also nausea and I feel like I am freezing eventhough the heat is on and I am under good blanket. Also tired like hell. Is that how it is or something is wrong ? I cant imagine going anywhere to be checked. Just cant wait to the morning to take more pred...
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Hi Alysia
Sorry you are going through this. I have had quite a few colonoscopies, around 5or 6 over the past 25 years and the prep is not pleasant to say the least. On two occasions (think the 3rd and the 4th) I had a reaction to the anaesthetic which only showed up about 6 hours after the procedure. I was already on my way home when suddenly I became very nauseous. During the next few hours I developed body aches and a slightly raised temp and was feeling awful. I took to my bed and there I stayed for the following 24 hours. This first time I thought that I had come down with a flu but got over it quickly which I thought at the time was unusual. A few years later, another colonoscopy and I got the very same symptoms also occurring about 6 hours following the procedure. Now I knew it was the anaesthetic. I phoned the anaethetist who did both procedures and found out the Propofol was used though he said he did not think it was that which caused the flu like symptoms. Since then I have refused Propofol when havng an anaesthetic and never had the symptoms again. You can have weird delayed body reactions to the anaesthetic though I am not saying that this is the case with you. Think you should contact someone if you don't see an improvement soon
Have you ever taken Imodium for the diarrhoea. When I had my bowel flare and the constant diarrhoea I took Imodium to stop the diarrhoea when I needed to get to the doctor or the hospital. Depending on how much I took it gave me many hours of relief.
Rose
Last edited by Rose; 12-24-2016 at 11:19 AM.
Thank you so much Rose, for your support and for sharing your experience and wisdom. Maybe I am reacting to the sedation stuff as well. Still super crazy diarrhea at night and this morning. Never tried Imodium. I dont have any. I took 25mg pred this morning and I eat rice...
Merry Christmass ☆☆☆☆
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
H Alyssia
speak to your doctor on using Imodium to control your diarrhoea. I do know that people who suffer from chronic diarrhoea who have been investigated but he cause has not been found, do get relief using Imodium. You can buy it over the counter but I think with your medical problems you should first discuss its use with your doctor. I don't know if you can use it long term.
Rose
My colonscopy's biopsies came back: "non specific colitis". Which leads me no where.
I met my gastro dr. and he will send the biopsies to a special pathologist to check them again.
Meantime he sent me to more tests. He prescribed rifaximine. Anyone knows it ? I didn't start it yet. A nutrition specialist prescribed me formula: modulen-IBD. I didn't start it yet as well. Anyone knows it ?
The diarrhea is less crazy. Still going a lot to the toilet. Maybe its a bit better because it is now the time when rtx works with full efficiency since I got the last round. I still have crazy stomach pains, day and nights and cant eat veggies and fruits, only a bit of pears. Thanks God for pears.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Hi Alysia
Rifaximine was considered for me when I was having repeat bouts of Diverticulitis. However turned out not an option as it was unavailable in South AfricA at that time...don't knows f that is still the case. As you probably know it is an antibiotic which works in the bowel and very little is absorbed into the blood stream. I don't know about the formula you mentioned but I am convinced that diet has a huge part to play in the healing of the digestive tract.
Did you mention the SMA test to your doctor? I know how frustred you must feel getting no real answer. I really do hope the new treatment plan helps.
Rose
Last edited by Rose; 01-26-2017 at 05:50 AM.
Thank you so much Rose for being so helpful all the way. God bless you.
I understood that Rifaximine is specific for the GI system and that it covers many options of infections. Meantime the health service here refused to pay for it so I guess I will have to pay on my own. 2 weeks treatment will cost me about 70$. Its a shame because I already pay for health insurance each month more then 200$ not including meds, docs visits etc.
Yesterday I felt so desparate after I got the refuse msg, my stomach was aching like hell and I visit the toilet about 8 times. So I decided on my own to change the plan (which was first rifaximine and then the formula). I started with the formula.
Thanks be to God. I started to drink it very slowly over couple of hours without eating anything else. Only drinking water. It tastes not too bad. Vanile flavour. But who cares ? About 4-5 hours later, Hallelluya, the stomach stopped aching. Feeling better today and I continue to drink it.
I hope it will continue to help. This is a link for the formula that I use, maybe it can help someone:
https://www.nestlehealthscience.com/brands/modulen
Last edited by Alysia; 01-27-2017 at 04:42 AM.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I can try to appeal but I will keep my fighting energy to try to get approval for participation in the formula. It is going to cost me much more, not sure how much yet, about 250$ or more per month. And they will not help without me fighting.
Its a shame.
Thank you drz. I hope that you are doing ok. God bless you.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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