My wife has C-diff and I need help helping her, please!

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
rc1379
Brand New Poster
Posts: 4
Joined: Mon Dec 11, 2017 11:47 am

My wife has C-diff and I need help helping her, please!

Postby rc1379 » Mon Dec 11, 2017 12:38 pm

Hello,
My name is Richard and I am struggling with a wife who has had C-diff going on for months now and I need some help. I don't know how to help her or give her the support that she needs while dealing with this and I feel so helpless. I have read so much about C-diff and I know what it is and how long it can take to get over it and in remission.

I would like to give so some background on my wife and what we have been dealing with. She is a 31 year old women and she been diagnosed with C-diff since about April 2017. She has also struggling with an eating disorder since she was a teenager; she was also diagnosed with lupus and is an alcoholic. She has been sober for almost 2 years, and as far I know she is not currently dealing with the eating disorder. She is able to eat and drink without pain, although she said whatever she eats goes through her within the hour, if not sooner. Last night she weight herself and her weight was a shock, 101 lbs. I know that malnutrition is one of the most common issues people with C-diff have to deal with.

I feel that I am constantly asking her how I can help or what I can do, and she says nothing. Just take care of things around the house, take care of our daughter who is 5, and just give support. Last night I was shocked to hear what her weight was and I reacted poorly. I think my reaction to her weight upset her and she has been distant ever since. I feel like I'm always asking her to drink water, and eat what she can. I offer to make meals that she can tolerate, and I ask her all the time what she can eat so I can make it. Recently I started asking about her drinking water and eating, and she has become very defensive and said that she is doing everything she can. I feel that because of her past issue with her body and the eating disorder, which her last cycle with was only about 2 1/2 years ago, she gets defensive about people knowing what she eats. There are a lot of trust issues with her alcoholism, but I'm in Al-Anon and I don't think she is drinking alcohol.

I don't know what to do! I've asked her to keep a journal of what she eats and drinks so that we can make sure that she is getting enough. She doesn't take a vitamin or any other nutritional supplements. I'm very worried about her getting the nutrition her body so desperately needs to fight this! She saw a nutritionist who works with her GI but she is not doing anything the nutritionist suggested. She is currently taking Vanco and we are looking into FMT. She has so much going on and I fear that this is all going to be too much for her body to take. I've told her that I'm worried and that I just want to help, but it seems that she is trying to distance herself more from me and I don't know what to do.

She is very smart and has done her research on C-diff and she knows how dangerous it is, so I truly believe that she is taking this seriously. I know this is a lot, but right now I just want to focus on the C-diff and helping her get past it so that she can start to get some of her strength back and start fighting all the other issues she is dealing with. What can I do to not come off as controlling, but still try to make sure she is getting what she needs? I truly feel helpless, like I did for the years when she was drinking. I feel like I am completely helpless and that there is nothing I can do?!? Any suggests would be greatly appreciated. Thank you.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: My wife has C-diff and I need help helping her, please!

Postby NanciT » Mon Dec 11, 2017 12:56 pm

rc1379 Hello and welcome to the site Please read the first thread for all new posters

I am sorry your wife is going through this and it can be so difficult for any family member. What's not clear in your post:

How is your wife being treated for CDIFF? You mentioned she has had it since April? Is she seeing an GI or an ID? How many rounds of medications has she been on? Do you know which medications and for how long?

This all can be complicated by any eating disorder but if she is seeing a GI I would imagine they would recommend a nutritionist to help with both.

It's difficult to help here if we don't knw the actual history of the CDIFF.

NanciT

rc1379
Brand New Poster
Posts: 4
Joined: Mon Dec 11, 2017 11:47 am

Re: My wife has C-diff and I need help helping her, please!

Postby rc1379 » Mon Dec 11, 2017 1:12 pm

NanciT
So she has she has been seeing a GI. She has done the Vancomycin three times. I know she had done another antibiotic before the Vancomycin, but I don't remember what it was called. The last round of Vancomycin was for two weeks. We thought that she was gone with it and then symptoms stated coming back last week and she came back with CDiff again. She is back on Vancomycin again for two weeks.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: My wife has C-diff and I need help helping her, please!

Postby roy » Mon Dec 11, 2017 1:35 pm

What symptoms of c.diff is she having and what were her initial symptoms?

rc1379
Brand New Poster
Posts: 4
Joined: Mon Dec 11, 2017 11:47 am

Re: My wife has C-diff and I need help helping her, please!

Postby rc1379 » Mon Dec 11, 2017 1:47 pm

Roy
Sorry I'm new to this so I don't know what info is best to share and my mind is just all over the place.
She is sick almost daily and has diarrhea least 10 times a day. She has nausea but is taking medication for that, but still vomits. She says that her stomach is always hurting and she has cramps. She's always weak and tired. Sometimes she will just fall asleep during the day.
Initially her symptoms were just stomach pain and diarrhea, she went over a month before getting a GI and getting tested for C-diff.

AllisS
Long Time Contributor
Posts: 1889
Joined: Fri Sep 07, 2012 10:52 pm

Re: My wife has C-diff and I need help helping her, please!

Postby AllisS » Tue Dec 12, 2017 1:19 am

Hi Richard. Your wife sounds very ill and in need of ER treatment so that she doesn't become severely dehydrated. Also, not all GI doctors are experienced in treating C. diff; that she's been placed on Vancomycin repeatedly, when it doesn't seem to be helping, suggests that may be the case with her prescribing doctor. Try and get a referral to either a GI doctor who specializes in C. diff or an infectious disease doctor. A newer drug, called Dificid, is now often tried if Vanco and/or Flagyl (likely the drug she was prescribed prior to the Vanco) hasn't worked; I'd ask about that as well.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: My wife has C-diff and I need help helping her, please!

Postby georgina » Tue Dec 12, 2017 4:27 am

I'm sorry to hear that your wife is having such a hard time . If she has done the Vanco the classic 14 days course three times , why didn't her doctor thought about keeping her on a taper/pulse programe or a FMT . Also if she is back on vanco and the D is not controlled she needs to go back to her doctor and revise the dosage. Dificid is also a good option to consider as Aliss said ,it has a higher cure rate then vanco.

rc1379
Brand New Poster
Posts: 4
Joined: Mon Dec 11, 2017 11:47 am

Re: My wife has C-diff and I need help helping her, please!

Postby rc1379 » Tue Dec 12, 2017 1:41 pm

She did see a GI who specializes in FMT we're just waiting for the approval from the University hospital in our area that does the FMT. I've heard good things about the FMT and its success rate. I will talk to her about Dificid and see what her GI thinks.

Is this common with C-Diff? Does it take this long for someone to get over it? I'm so worried about her I wish there was more I could do.

AllisS, we did end up going to the ER to get fluids, she was very dehydrated.

MrsM25
Regular Contributor
Posts: 149
Joined: Fri Nov 17, 2017 4:41 pm

Re: My wife has C-diff and I need help helping her, please!

Postby MrsM25 » Thu Dec 21, 2017 10:42 am

Hi rc1379! Sorry that you and your wife are going through this! It really is a trying thing to deal with. I can only speak on my personal experience. I am a 29 year old female, married, 2 kids (18 months and 4 year old). I am actually currently still dealing with cdiff. It’s been almost 3 months now. Mine was caused by multiple rounds of different antibiotics over a short period of time plus a surgery at the beginning of October. I began with a course of flagyl and was put on vanco at day 9 of the flagyl because it wasn’t taking care of my symptoms. The vanco worked for me after 10 days but the cdiff returned about 6 days after the course was finished. I went back on the vanco for another 10 days and again was feeling good but after the course was finished, I relapsed again after 3 days. Now I’m back on the vanco AGAIN but this time it’s indefinitely until I have an FMT in January. I too was losing weight uncontrollably even though I was eating and drinking what I could. I got down to 101 also. I’m generally a small person as well but in my healthy days before cdiff, I was going to the gym 3 days a week, lifting weights. Let me say that the 101 weight freaked me out a little bit. I also suffer from Hashimoto’s thyroiditis which is an autoimmune disease like lupus is. All of these things can be distressing for you and your wife. Sounds like you have both been through a lot. I think my husband gets frustrated sometimes with me because he gets scared and doesn’t know what to do to make it better. He feels like he should be able to protect his family from everything but this is so out of his control. I think it’s hard to relate to each other sometimes when you are both scared and coping in different ways. It’s definitley a good idea like others have said to get her checked out in the ER if she isn’t able to keep things down or if she is not staying hydrated enough or if her fever is very high. Cdiff takes a lot out of you so being fatigued as well isnt uncommon. Do either of you seek counseling? Sounds silly but it does help sometimes in dealing with the emotional side of it. I’ve started going and my husband has said he would join if needed. It’s a very stressful thing to go through on both sides. Praying for you!

maxny2
New User
Posts: 23
Joined: Tue Nov 21, 2017 9:29 pm

Re: My wife has C-diff and I need help helping her, please!

Postby maxny2 » Sun Dec 24, 2017 6:22 pm

Any update? Hope she got a dose adjust, taper pulse, Dificid, or FMT.

Also, with c diff and a history of alcohol misuse or dependence, avoiding alcohol is super critical.

Sound like a trip to the ER for dehydration may be in order anyway, but if there were alcoholic drinking on top of the c diff, I'd try to get there post haste.

TinaKS
Brand New Poster
Posts: 3
Joined: Sun Jul 01, 2018 9:13 pm

Re: My wife has C-diff and I need help helping her, please!

Postby TinaKS » Sun Jul 01, 2018 9:38 pm

My first post here. I am caring for my husband who had major surgery in February, bladder reconstruction with his own intestine due to bladder cancer. He was diagnosed with Cdiff within 10 days while recovering in the hospital, and has been in an out of the hospital since. He is also extremely lethargic and is also very thin.
He is on Vanco for 4 weeks, a capsule, every 6 hours. In addition to that antibiotic, he also on a gravity drip antibiotic, Ertapenem for a bacterial blood infection that developed in a fistula in his colon. I am concerned that this antibiotic is causing more issues.
He is on a clear liquid diet for many weeks to come. But, he is also on a TPN through a PIcc line, giving him nutrition and hydration. This will continue for 6-8 weeks.
Perhaps that is what you wife may need, intravenous nutrition. Unfortunately, it is administered at home, and I had to learn how to do this.
I'm so upset for my husband, he was a healthy, athletic man.
I'm exhausted, upset and have no one else to help me. A Nurse comes from the pharmacy that takes care the Picc line once a week, and a nurse comes once a week from the hospital to monitor his temperature, blood pressure, etc., but I have become a nurse myself. It's overwhelming. I can no longer work.
Remember that you must take care of yourself. I wish you all the best, and hope your wife is healing.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: My wife has C-diff and I need help helping her, please!

Postby NanciT » Sun Jul 01, 2018 9:51 pm

Hello TinaKS

Welcome to the site, this is an old thread you have posted on( from 12/17). You can start a new thread if you are looking for reply's.

I am so sorry your husband is dealing with CDIFF post surgery. Please speak with his GI and possibly consult an Infectious Disease specialist. If he is currently dealing with a serious infection AND dealing with CDIFF, the antibioitc can counter the Vancomycin. I would ask for both GI and ID to consult and decide the best way to treat his complicated case. Often it can take a "Team" approach with complicated cases.
Wishing your husband the best for recovery soon!
NanciT

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: My wife has C-diff and I need help helping her, please!

Postby beth22 » Sun Jul 01, 2018 9:52 pm

Hi TinaKS - This is a post from over six months ago, so the poster may not respond. Meanwhile, welcome to the site. Please read the first forum for general information for new posters.

I know how exhausted you must be and how overwhelming all of this is. Can the home health help not come in a little more often? I'm sure that your doctor is aware that the other antibiotic can make c difficile worse. What dose of vancomycin is your husband taking 125 mg capsules or 250mg capsules? How are his GI symptoms? You might talk to your doctor about tapering his vanco medication rather than stopping abruptly. Usually people have better results with that.

TinaKS
Brand New Poster
Posts: 3
Joined: Sun Jul 01, 2018 9:13 pm

Re: My wife has C-diff and I need help helping her, please!

Postby TinaKS » Mon Jul 02, 2018 10:35 am

Thank you both for responding so quickly! I did read the general information, and will certainly post a new thread.
My husband is taking the 250 mg capsules. He has the 2 doctors, the ID doc and one of his surgeons, the GI doc overseeing him. He also has a urology surgeon as well, since he has the new bladder still with drains coming out of the new bladder.
I will call the doctor today to find out about the tapering off of the vanco. I am so grateful I found this site, as I would never know about many of the issues, and especially the complications of cdiff.
Nurse comes to take blood every week, and change the dressing on the Picc line. I actually can go out to shop, have some lunch out and see a friend. He can be alone for hours at a time. He even walks with a cane around the living room to the kitchen and back for exercise, and lifts small weights to strengthen his arms!
His fever has leveled off at 98.6 and 100, and they confirmed he had a bacterial blood infection our last stint at the hospital, that stemmed from an infection from the new bladder/fistula area. I see though that many that post here do have fever associated with cdiff. The ertapenem is for the bacterial infection. I will ask about the counter effect of that drug on the cdiff, again, something I would never know to ask!
At the moment, the diarrhea is still with him, but not as much. Once an hour, sometimes twice, sometimes he can sleep for about 4 hours and not even get up to go. We keep a commode next to where he rests most of the day, and he stays there at night too, it's so much easier.
Since he is on liquid clears, and has the TPN (total parenteral nutrition) through the Picc IV, they are hoping this fistula heals itself.
At that time, the doctors will be able to remove the tubes and he can use a catheter to urinate from a stoma in his belly button.

My husband was the talk of the hospital. Every doctor knew of this surgery, and the nurses, most who had not seen this type of procedure, called an Indiana Pouch, were very interested in overseeing him. I pretty much stayed with him at the hospital 15 hours a day and did everything a nurse would do.
As far as this horrible Cdiff is concerned, something I had never heard of before, I truly hope this does not ruin his chances of recovering from the bladder surgery.
Thank you again, I will be reading many more posts here for help.
Keep cool, and Happy 4th.


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 20 guests