Need all your advice ):
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lalalauren16
- Little Blue Penguin
- Posts: 31
- Joined: Tue May 30, 2017 9:19 pm
- Location: Santa Barbara
Need all your advice ):
Hey everyone, Im Lauren some of you know me. I just wanted to update how my situation is going I am scheduled for another transplant on the 22nd. The doctor is now saying I have to take Entocort because she thinks its the MC that is stopping me from getting rid of the c-diff. I am terrified it will make things worse and not added benefit
Lauren B
Lauren, I'm not a doctor, but I've had MC since 2008... at least that's when it was diagnosed....and then had Cdiff in 2008 & 2013.... and then got rid of it while having MC....
I think it's difficult for some docs to tell the difference as symptoms can be similar....the protocol they follow is part of the problem because the first antibiotic they insist on giving is 92% ineffective.....the Ciff bugs can learn to identify the antibiotics and then " hide out " by sporolating untill the antibiotic is done....then they "hatch" and the cycle continues. They also burrow into the gut lining and can hide among the many fold of the intestinal wall.
There are newer antibiotics they can use but they are expensive....so I suffered for almost 6 months taking multiple antibiotics that were ineffective until I was almost dead. Had I not had a fecal transplant, I would have died. And my doctor said with a straight face, "well, we will just keep giving you this antibiotic until we get it! "
And that is the classic definition of insanity ....to keep doing what hasn't worked and expect different results!
What antibiotics have they given you? For How long?
Killing Cliff is the highest priority IMHO...
those burrowing microbes are releasing toxins that impact every organ in your body! Cliff is a killer...you might consider a second opinion.....I asked one doctor if he would be so cavalier if it was him with fecal matter running down his pant legs into his socks and shoes! I asked if he would be willing to carry several changes of underwear, socks, slacks, and shoes every day to work?
He had no answer to that.
How long have you had Cdifff? Is your doc a gastroenterologist?
Sunny
I think it's difficult for some docs to tell the difference as symptoms can be similar....the protocol they follow is part of the problem because the first antibiotic they insist on giving is 92% ineffective.....the Ciff bugs can learn to identify the antibiotics and then " hide out " by sporolating untill the antibiotic is done....then they "hatch" and the cycle continues. They also burrow into the gut lining and can hide among the many fold of the intestinal wall.
There are newer antibiotics they can use but they are expensive....so I suffered for almost 6 months taking multiple antibiotics that were ineffective until I was almost dead. Had I not had a fecal transplant, I would have died. And my doctor said with a straight face, "well, we will just keep giving you this antibiotic until we get it! "
And that is the classic definition of insanity ....to keep doing what hasn't worked and expect different results!
What antibiotics have they given you? For How long?
Killing Cliff is the highest priority IMHO...
those burrowing microbes are releasing toxins that impact every organ in your body! Cliff is a killer...you might consider a second opinion.....I asked one doctor if he would be so cavalier if it was him with fecal matter running down his pant legs into his socks and shoes! I asked if he would be willing to carry several changes of underwear, socks, slacks, and shoes every day to work?
He had no answer to that.
How long have you had Cdifff? Is your doc a gastroenterologist?
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hang in there Lauren! I know you just broke up with your love.....
Relationships take a huge hit when someone gets a chronic illness. If you can hold onto any saying right now "This too shall pass". Nothing lasts forever and things WILL get better for you. Long distances alone are tough on any relationship and adding illness to the mix is a double whammy. And I'm assuming he is also a young lad. I lost many friends whom I held very dear due to this illness. They just quit calling to do things knowing I couldn't go out to eat! I was very sad but realized they were not true friends. Their relationship with food was more important than I was to them. I also had to remind myself through the tough times in my marriage that all we really have is ourselves. No one else is going to love us as much or do what we need for ourselves like you can! Then when you thrive.....your life flourishes. Also the universe kind of knows what its doing. Closing this door means something better is in store for you! Just tough to see right now.
Keep up your magnesium if you can.....it will help with your emotions. 90 % of our Serotonin is made in the gut not the brain.(mood balancing neurotransmitter) So when your gut is taking a hit, its real easy to get down.....
Hugs,
Vanessa
Relationships take a huge hit when someone gets a chronic illness. If you can hold onto any saying right now "This too shall pass". Nothing lasts forever and things WILL get better for you. Long distances alone are tough on any relationship and adding illness to the mix is a double whammy. And I'm assuming he is also a young lad. I lost many friends whom I held very dear due to this illness. They just quit calling to do things knowing I couldn't go out to eat! I was very sad but realized they were not true friends. Their relationship with food was more important than I was to them. I also had to remind myself through the tough times in my marriage that all we really have is ourselves. No one else is going to love us as much or do what we need for ourselves like you can! Then when you thrive.....your life flourishes. Also the universe kind of knows what its doing. Closing this door means something better is in store for you! Just tough to see right now.
Keep up your magnesium if you can.....it will help with your emotions. 90 % of our Serotonin is made in the gut not the brain.(mood balancing neurotransmitter) So when your gut is taking a hit, its real easy to get down.....
Hugs,
Vanessa
Vanessa
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lauren
my heart goes out to you for your situation.
Vanessa has expressed similar thoughts to me. Life with Chronic Illness (and MC is a chronic illness) is tough and does cause BIG changes. Similar to Vanessa, MC and my combo of health issues created a big 'true friend' filter for me.
along with that I had to make changes with my career, living situation etc etc. I wont lie, it took me years of mental and emotional work to process the changes, the losses, the impact of life with chronic illness..
in saying that, I was also able to see the gifts that came to my life because of these changes. (I didn't see them at the time)
hang in there.
given everything else we talked about with the C Diff, maybe doing entocort is the best thing for right now. it wont be forever and maybe your body needs that boost of support to lower inflammation levels.
lots of hugs
xo
my heart goes out to you for your situation.
Vanessa has expressed similar thoughts to me. Life with Chronic Illness (and MC is a chronic illness) is tough and does cause BIG changes. Similar to Vanessa, MC and my combo of health issues created a big 'true friend' filter for me.
along with that I had to make changes with my career, living situation etc etc. I wont lie, it took me years of mental and emotional work to process the changes, the losses, the impact of life with chronic illness..
in saying that, I was also able to see the gifts that came to my life because of these changes. (I didn't see them at the time)
hang in there.
given everything else we talked about with the C Diff, maybe doing entocort is the best thing for right now. it wont be forever and maybe your body needs that boost of support to lower inflammation levels.
lots of hugs
xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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lalalauren16
- Little Blue Penguin
- Posts: 31
- Joined: Tue May 30, 2017 9:19 pm
- Location: Santa Barbara
Hey Sunny - Yeah I have had falyg and oral vancomycin, many doctors have told me oh you should just do a long antibiotic therapy but as you said I know thats insane. So I told the doctor that I MUST have another transplant. I will be having another but I don't know how I will take these pills since I have acid reflex disease and an extreme phobia so im freaking out about the fact I cant crush these. Its interesting you say that because I asked if they could test for the strain I had and they said there was no such thing. They said however bad it is, is how long the symptoms persist while on antibiotics. Which sounds crazy that they claim they cant test the strain. The longest I've been on Vanco is like almost 2 months. Yeah its been about 6 months even with the transplant. So you can imagine I am pretty afraid that I will die. Yeah I have a gastro and infectious disease doctor. I've so far seen 3 gastro's.
Vanessa - Thanks so much. It means a lot. Yeah we're both young about 23. I've seen friends disappear from this too. I think your very right about self love. I have realized I need to hold my head up high. I will definitely do that.
Gabes - Thank you, you are right. I have already been making huge changes. Emotionally it has been taxing on me, but having you all makes me feel better and not alone. Especially since doctors keep telling me its so rare for someone my age to be having these problems. Which is frustrating because no one around me can relate or understand within my age group. Yeah I just pray I can swallow it. Im so afraid that I'll just choke this phobia is now going to have to be tackled and im terrified
Vanessa - Thanks so much. It means a lot. Yeah we're both young about 23. I've seen friends disappear from this too. I think your very right about self love. I have realized I need to hold my head up high. I will definitely do that.
Gabes - Thank you, you are right. I have already been making huge changes. Emotionally it has been taxing on me, but having you all makes me feel better and not alone. Especially since doctors keep telling me its so rare for someone my age to be having these problems. Which is frustrating because no one around me can relate or understand within my age group. Yeah I just pray I can swallow it. Im so afraid that I'll just choke this phobia is now going to have to be tackled and im terrified
Lauren B
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lauren
given the situations/events you are currently experiencing I would encourage you to get support either via psychologist / counselor / online resources to help you with the unsettlements with health, relationship, multiple health issues etc.
it is not a sign of weakness to get this type of help, if anything it is sign of strength.
Also - this post from last year has great book recommendation that I think will be beneficial to you
http://www.perskyfarms.com/phpBB2/viewt ... ht=chronic
also - it might be rare for that doctor to have someone that age having issues, but i can tell you, it is not rare for young people to have complex multiple health issues.
hope this helps
given the situations/events you are currently experiencing I would encourage you to get support either via psychologist / counselor / online resources to help you with the unsettlements with health, relationship, multiple health issues etc.
it is not a sign of weakness to get this type of help, if anything it is sign of strength.
Also - this post from last year has great book recommendation that I think will be beneficial to you
http://www.perskyfarms.com/phpBB2/viewt ... ht=chronic
also - it might be rare for that doctor to have someone that age having issues, but i can tell you, it is not rare for young people to have complex multiple health issues.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Lauren,
I agree with Gabes suggestion to find more support....counselor, psychologist, etc. I'm a retired therapist and also needed someone beside my family or friends to share the frightening burden of multiple health issues and the fear that engenders.... so I went to my therapist for some "tune up" sessions. She recommended the same author( that is referred to in the link Gabs's provided above) Toni Bernhard....the book I bought was HOW TO BE SICK, an earlier book. Toni also writes a blog on Psychology Today called "Spinning Gold From Straw"... Toni has been bed- ridden for over 10 years so she writes with the voice of authticity.
As for the comment they had that there was no such thing as strains of Cdiff....OMG ! This is frightening in its ignorance! Just do a search on BING or google for "strains of Cdiff " and see for yourself!
My lab report had a note to the doctor explaining the strain and it's virulence and resistance to most antibiotics commonly used. That answer your doc gave you was not acceptable and reflects a frightening lack of knowledge . Second opinion possible?
The plus for you is your age...your body has resources mine doesn't at 78.... that youth is in your favor....
Sunny
I agree with Gabes suggestion to find more support....counselor, psychologist, etc. I'm a retired therapist and also needed someone beside my family or friends to share the frightening burden of multiple health issues and the fear that engenders.... so I went to my therapist for some "tune up" sessions. She recommended the same author( that is referred to in the link Gabs's provided above) Toni Bernhard....the book I bought was HOW TO BE SICK, an earlier book. Toni also writes a blog on Psychology Today called "Spinning Gold From Straw"... Toni has been bed- ridden for over 10 years so she writes with the voice of authticity.
As for the comment they had that there was no such thing as strains of Cdiff....OMG ! This is frightening in its ignorance! Just do a search on BING or google for "strains of Cdiff " and see for yourself!
My lab report had a note to the doctor explaining the strain and it's virulence and resistance to most antibiotics commonly used. That answer your doc gave you was not acceptable and reflects a frightening lack of knowledge . Second opinion possible?
The plus for you is your age...your body has resources mine doesn't at 78.... that youth is in your favor....
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Lauren,
I agree with Gabes and Sunny. And that foolishness about there not being but one strain of C. diff is absolutely ludicrous. If there weren't new strains evolving regularly there wouldn't be such a thing as antibiotic resistant bacteria.
Tex
I agree with Gabes and Sunny. And that foolishness about there not being but one strain of C. diff is absolutely ludicrous. If there weren't new strains evolving regularly there wouldn't be such a thing as antibiotic resistant bacteria.
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.