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trouse
@trouse

Posts: 40
Joined: Jan 31, 2013

C-diff infectios disease

Posted by @trouse, Feb 9, 2013

I would like to know if anyone has dealt w/ c-diff colitis difficle infectios disease? I was diagnosed back in March 2012. Has had 3 recurrent episodes. I am dealing w/ it right now. This is my third relapse and on vanco tapering . Seeing a gastro specialist but waiting to be seen by a infectios disease doctor. c-diff the short term for it, is very contagious and canot go out in the public. It has been very hard on me dealing w/ this terrible infectious bug?
It would be nice to hear from someone who has had his before?

Tammy/ trouse

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arieon69
@arieon69

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Joined: Feb 25, 2013
Posted by @arieon69, Mar 1, 2013

C. Diff? No, but gastrointestinal issues, yes. I feel for you, stay hydrated with electrolytes as diarrhea can easily cause dehydration. Seems like they should be pumping you with IV antibiotics and pain meds to help you defeat it. Why haven’t they? If it get worse, it can become life-threatening. Hope you get well and feel better. A prayer for a speedy recovery love.

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trouse
@trouse

Posts: 40
Joined: Jan 31, 2013
Posted by @trouse, Mar 1, 2013

Thank you for your reply! It is a disease that is still being investigated as for a cure! Not many people have heard of it before, i guess that is why I havent gotten many replies. My symptoms of the c-diff since I have been diagnosed are flu-like, and had some off and on diarrhea, but not alot. I have mostly been having weird looking bowel movements throughout all my relapses. Going more han 3 times a day, sometimes 6-10 depends on the day. I was also diagnosed w/ post infectious IBS, and fibromyalgia. Been on the tapering method for two months now, just started on another 8 week taper. I am going to see a disease specialist for this in two weeks. It has been a year now since I have had reacurrances. Lost my job/ home/ etc over this disease. My specialists say it could be another year or two, not promising to get back to normal, due to some damage I had from the second episode. The doctors and specialist are supporting me for disability at this point which I have a lawyer working on this. Hopefully it all comes through. I am getting assistance from the hospital etc. for my bills. The meds have alot of side effects/ fatigue weakness/ etc. I am on a special diet etc. I am contagious so I have to stay away from the public as of now!! Havent been able to get out, have several restrictions due to my immune system being weak, the doctors do not want me to catch anything else. I got this from antibiotics!! It has been hard and frustrating. I am happy I got in to see a specialist who reviewed my med records, so I shold know more as to what is going on. I have done alot of research on this infectious disease. My doctors are watching me close!! As far as IV meds, that is something I need to ask the disease specialist! They would know more on the outcome and my options. I just want to feel normal and want my life back! Thank you for the reply, and the prayers, they are definitely needed my way!! I hope I can talk to you again!! I will keep you updated. Thanks again! trouse


arieon69
@arieon69

Posts: 7
Joined: Feb 25, 2013
Posted by @arieon69, Mar 1, 2013

I take Remicade for my Crohn’s disease and supposedly it lowers my immune system but I get a boost of healing to my non-healing wounds, though it only last for 3-4 weeks and I get the med every 8wks. My wounds never heal. Its been 5 years! I’m only 22 so talk about a major hindrance. You only lost material things, well needed for sure, but there is a blessing coming in a major way for your suffering and your losses. Having diseases or illnesses as we have, only control our lives for what we can/can’t do. Its hard to push it all aside because of the pain. I lost a relationship because I was “using my illness as a crutch for why we didn’t do anything anymore” a fricking crutch. People do not know nor understand the pain unless they endure it. To seriously make my pain stop, I have to be in the hospital on IV dilaudid. You will get thru this, it us only a hiccup in the road. The one thing I hate about antibiotics is that wretched metallic taste on your tongue. They make everything taste weird and kept me nauseous. Nonetheless keep me posted!

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trouse
@trouse

Posts: 40
Joined: Jan 31, 2013
Posted by @trouse, Mar 1, 2013

aerion, I am so sorry to hear you go through Crohn’s Disease. I had a friend who had it, and you never know when you will have an attack. Very painful, and hard to control. You are so young to have such a disease, and having it continuing for 5 years. How do you work? Cope? I know about diseases causing damage to your system, not to mention how diseases kill your immune system. The meds I understand/ Nausea/ etc. I am allergic to many pain meds/ antibiotics/ meds/ etc. So I am limited. You are so right about those that do not understand what you are going through unless they experience it themselves. You could try to explain to them how you feel, but still doesn’t help. Sometimes it’s like just lay down you’ll feel better later! I must have heard that several times. I am sorry you lost a relationship over our disease. I am married and in my 30’s and it has been rough on our marriage, because I am the same way . I can’t go out because I do not feel good, or I am tired and always sleeping because of the meds, etc. The past 3 years I have had other illnesses/ surgeries, it has been a long haul. I opened up to my husband and talked and made him realize what I am going through, sometimes he wouldn’t listen and then there were times when he never took me to the doctor visits/ ER/ etc. I had to relyon my parents. He is understanding now somewhat, it takes time, but he is sticking by me. That I am thankful for! I was always told, Never ask Why? you won’t get an answer. You take life the way it comes to you, and take i one day at a time and stay positive, when you always feel negative. Support from others is the key. You are very kind talking to me and being open. This helps. I will keep you in my prayers and thoughts. It is nice to talk to someone who is battling situations like us. Please keep in touch w/ me. Let me know how things are going. If you need to talk I am here.

trouse


pamv
@pamv

Posts: 7
Joined: May 01, 2013
Posted by @pamv, May 1, 2013

I had c diff in 2011. The doctors put me on two different antibiotics and it cleared it up. I have not had a recurrence.I don’t remember what they put me on but I could look it up.I think one was oral and one iv. I had it post op.


trouse
@trouse

Posts: 40
Joined: Jan 31, 2013
Posted by @trouse, May 2, 2013

Thank you for the reply, I do not get alot of feedback on this site for those who have or had c-diff. This is my third relapse. I have been on oral vanco taper for the last 10 weeks. I see my GI doctor today. Still having symptoms. I am also seeing a disease specialist now. It has been frustrating. I lost my home and my job over this illness. I have not worked since last March 2012. The doctors say it could be up to two years for me to feel 100%. There is no guarantee that I won’t relapse again. My disease doctor says since I relapsed 3 times w/ in a year, more than likely I could relapse again!


pamv
@pamv

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Joined: May 01, 2013
Posted by @pamv, May 2, 2013

hi just had a thought .I don’t know if this pertains to you or not. we’ve noticed with me because of my complicated GI issues that my body doesn’t always absorb oral medications the way it should. When I had c diff I was on IV meds. I’m wondering if you’re in the same situation for your body is not absorbing the medication properly.it’s something to talk to your doctor about.if you need IV meds it doesn’t necessarily mean you have to be in the hospital.
my c diff cleared up before I left the hospital. I’ve never had a relapse. my doctor said he didn’t expect it. Don’t know if this helps or not. But it’s worth asking your doctor.


pamv
@pamv

Posts: 7
Joined: May 01, 2013
Posted by @pamv, May 2, 2013

are they positive it’s actually c diff? the only way to get a true diagnosis is to have your stool tested for it. Did they do a culture? if it’s not actually C Diff it may not respond to the same antibiotics.


trouse
@trouse

Posts: 40
Joined: Jan 31, 2013
Posted by @trouse, May 3, 2013

Went to the GI doctor today! He took me off my probobiotics, finished w/ the vanco, and is trying a fiber supplement. He said that I could be lactous intolerant. No dairy products/ etc. Getting my stool test again in 3 weeks, to test for c-diff again! Thaks for the reply!

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