The Good News & The Bad

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momof327
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The Good News & The Bad

Postby momof327 » Wed May 04, 2016 9:26 pm

Good evening fellow sufferers!

The good new -As many know I'm doing a vanco taper after two previous rounds of vanco failure. I'm once again tapering tomorrow from 125 x 4 a day to 3x day. I haven't had any D for about a week or so but now seem to have a pattern of not doing anything for 2 days then after 2 the mush starts continuing about 7x a day like that and varying from formed, mush, pencil like etc then back to a couple days of nothing. I honestly never know what to expect when I use the restroom. I have literally remodeled our bathroom 50 times in my head just because of the long amounts spent in now what has become where to find mom. lol

I'm hoping this means I'm on the mend with this nasty but proceeding with caution optimism. I am seeing a GI specialist on May 18th. The GI is in town only once every two weeks so had to wait on an apt. and my regular internist is just not versed well enough to only see him. Nausea still a big issue.

The bad news - I've been on vanco steadily since the 1st week in January. I ended up getting this in the first place because of an abscessed tooth and having to have IV then oral Clindamycin. I have been experiencing headaches since starting the vanco but they have been getting so bad they've become debilitating. Because of my numerous other health issues, Motrin, etc is out of the question so it's been mostly Tylenol every day. It's no longer helping so I'm at a crossroad. My doctor told me after doing blood work, I'm having kidney function issues. It seems to have been on a steady decline. Knowing some of the offenders I'm really not sure which way to turn. I'm feeling very overwhelmed with all the issues I'm facing, many of which I haven't disclosed on here. I only get between 3-5 hours of sleep per night so adding that makes it just more challenging to cope. The more tired I am, the less I'm able to deal with it all.

I'm on overload and it's scaring me. I find the more distressed I'm becoming, the less I communicate. I'm becoming way too secluded and finding it harder and harder to just keep taking the incoming. Kinda want to just throw up my hands! I've had enough of all of it. I might add I lost my ex-husband in February to cancer (we stayed good friends) , two of my sisters to the same a year ago and 10 years respectively and one of my very best friends has been fighting the fight with it for a couple years. I do all I can to uplift her and since she recently lost all her hair. I volunteered to shave mine head to show support. (It's only hair after all) I think then "who am I to complain when what they face and have faced is so much more difficult" then feel guilty. And round and round I go.

Just all feels too heavy at times. The anxiety is at an all time high and it all just keeps being added on. Some days I just want to jump out of my skin!

Guess just venting but any suggestions would be welcomed on how to not only deal with the cdiff and all it entails, but all the "other" junk thrown at us at the same time. I'm just so so tired.

God bless all. I don't know how people go on years and years with relapses etc and still stay emotionally healthy while trying to deal with life "stuff"
Terri

NanciT
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Re: The Good News & The Bad

Postby NanciT » Wed May 04, 2016 10:21 pm

Terri

It sounds like things are piling up, you have come to the right place.........First I want to say what you are describing with the BM's is typical during treatment and also Post treatment. It takes quite some time for things to get back to "normal". I call it a new normal now.
The nausea is hard to deal with,especially day in and day out. I used "Sea Bands" and continued to wear them post CDIFF for awhile. You may want to try them.
The kidney issue is something I would review with the GI again and ask if he feels you need to see a specialist at this point, it would depend on the numbers.
The headaches we have seen often on this board and can be due to the Vanco. Hopefully as you lower the dose, things will improve. It does make it hard when there is little you can take for it.
It also sounds like you have been dealing with a great deal of loss and and trying to support others. Do remember to take care of yourself in all of this, take some quiet time just for you. You are also going through a great deal, hopefully after this taper will work for you and CDIFF will be a thing of the past
Wish I had more comfort for you, I will say you will get better....brighter days ahead
NanciT

momof327
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Re: The Good News & The Bad

Postby momof327 » Wed May 04, 2016 11:12 pm

Thanks Nanci, You and others on this board are such a God send! The doctor has me taking Phenergan and it helps somewhat but makes me so "dull" around the edges and adds to my chronic sleepiness. (it also has some awful side effects) I might just try the seabands you mentioned.I've had gastroparesis since I was in my 20's (another darn condition) so I've been given every nausea med imaginable. Reglan as well although my doctor recommended I not use the Reglan during this cdiff bug. With this cdiff, I feel like someone turned on the nausea button and forgot to shut it off! The bands however I've never tried so I'll definitely be checking them out. I've gone from chronic constipation for years to the other end of the spectrum with the cdiff.
The headaches have me so frustrated at this point and I'll speaking with my doctor sooner than later about it. When I told him on my last visit he said the headaches weren't from the vanco and that only iv vanco could give people headaches. Upon doing more research on my own, I found him to be wrong on this. Ugh! I'll be bringing him the info I acquired so maybe then he won't dismiss it. I also deal with a pseudo head tumor and sometimes I'll get fluid on my brain, another avenue of what the headache cause may be. It all just gets so dizzying! Adding more meds or having to get a stent to is just not where I want to go.
Appreciate the encouragement! Honestly though if I give myself any more downtime than I'm already being forced to take, I think I'll go crazy! Down time gives me time to think = Thinking overwhelms me = More overload. Rock and the hard place seems the story of my life the last 6 months. I want to escape the focus on me and all that is being thrown at me. Does that make sense? I'm sick of being sick. I feel as I've been in survival mode so long, I can't breathe. I know "This too shall pass" but I've had to fight so many years with other health issues family issues etc, I'm just out of ways to do it any more. I don't know, maybe a good cry is in order. If I could afford a vacation, now would be the time.
Thanks for listening. I'm so afraid if I keep bottling it all up which is my old mo, I'll have a melt down. Thank you for lending an ear and understanding what I'm living thru. It's a comfort knowing your all here.
Terri
Terri

getwellsoon
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Re: The Good News & The Bad

Postby getwellsoon » Thu May 05, 2016 6:50 am

You have been through so much, my heart aches for you. I know the isolation and fear of these illnesses and also the loss of loved ones. I also fight nausea and its awful. The phenergan does make me sleepy also but I would rather be sleepy than nauseous. I am dealing now with C of all things after going years of D and soft stools post my Cdiff fight. I had to have surgery, also have severe spinal stenosis and have been very inactive so a lot of time spent on my own and in my head, which isn't good. I use Metamucil and it helps with the C I have also started magnesium to see if that will help. I pray all this turns around for you and we both can start to live again and feel better. Just keep tapering the Vanco. Have you tried Dificid yet, it finally cured me of my CDiff. I recently had surgery and they used IV Vanco but I don't seem to have had any ill effects from it. It took me a long time to get over Cdiff but I did so you hang in there. Don't know why for some of us it takes so long but it just does but you will get well. Hang on to this. Hope today and everyday gets better and better for you.
CAROL

momof327
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Re: The Good News & The Bad

Postby momof327 » Thu May 05, 2016 8:19 pm

Carol, Thank you so much for your reply, it means a lot knowing I'm not alone in this. The phenergan does help and yes, the sleepiness it causes beats the nausea hands down but I'm taking sooo many meds it just gets old. I too have a lot of back issues. About 15 years ago while attending the Police Academy, I found I had fractured my back in two places. The surgery was unsuccessful and ended up having so much scar tissue it impedes my nerves. I was also diagnosed with spinal stenosis and 3 slipped discs.I had a tough time with the narcotics they gave me for pain and experienced chronic C for many years. I went from being a healthy, active, happy person to one who could barely walk and depression that I never imagined myself in. I didn't recognize myself anymore. Wheelchair bound for awhile although after much painful physical therapy, I only now need a cane. Unfortunately, I lost so much in the way of my 3 sons growing up and watching the effects it all had on them has been more devastating then the physical pain endured. What they had to cope with growing up with a disabled and depressed mom was difficult at best. It breaks my heart to be honest. I hadn't had a support system in place at the time because I had just moved away from most of my friends and family leaving me to single parent 3 young boys and cope with a devastating disability. Going from 100 to 0 mph was quite the shock for all involved.
After about 14 years I finally started to improve some and was over joyed at the prospects of "living" again. Then came the cdiff. Wow, talk about bad luck! To this point my faith has sustained me but (and I hate to even think it), I'm tired and I am so distraught at times fighting and just surviving. To be knocked down once again has taken the new found wind out of my sails I guess and add to that all the loss and family drama, what a dang mess!
Coming to the board here though does give me a glimmer of hope I'll get better and back on track.
As far as the Dificid goes, that or FMT will be my next option depending on what the new doctor says on the 18th. I continue to have some hope that this taper will finally do the trick and all this will be in my rear view window soon. The hearts of the people on this board amaze me. The strength and resilience is just unmatched. I truly pray every person who visits this board receives comfort the way I have and the healing each one deserves.
Terri

getwellsoon
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Re: The Good News & The Bad

Postby getwellsoon » Fri May 06, 2016 6:30 am

Terri, Your story sounds so much like mine it it amazing. I am also having trouble with the meds now that I had to take for pain control and also had so much scar tissue impeding the nerves I was so incapacitated for so long that I wasn't even living. I am still fighting the anxiety and depression but meds are only for short term relief which I found out too late. Anyway, just wanted to offer you hope that even with a severe lingering case of CDiff you can get well and I did. Now I have to get moving again and tackle the terrible shape my mind and body are in. We will get there, through our faith and prayer and hard work. Hang in there and hope every day brings you feeling better and better. God Bless.
CAROL

momof327
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Re: The Good News & The Bad

Postby momof327 » Fri May 06, 2016 8:12 pm

Carol, Thank you for your kind words and encouragement. You truly can't know or understand unless you've lived it. If nothing else all of this have left me a more compassionate and less judgemental person. It's quite a humbling experience especially when you realize you can't go it all alone. One of the things I've hated most about being disabled is having to rely and lean on others. Independent was a big part of who I was and as many say on here I had to get used to a "new normal". I'll keep you in my thoughts and prayers. We will survive and God willing, overcome. Anxiety and depression are battles by themselves. They steal your joy and peace especially if you become complacent with it. Thankfully with the God, meds, and the right people in your life it can be challenged and beaten. I'm counting on it! I hope you've had "good " day and that many more are on the horizon for all of us. "hugs"
Terri

Drm
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Re: The Good News & The Bad

Postby Drm » Sat Jun 25, 2016 1:37 pm

Terri,
I know exactly how you feel. I have been a highly productive, non-stop mom and career person, and this c-diff has stopped me dead in my tracks. I have a good day and think I am going to turn the corner and then can't get past the nausea the next day enough to eat. It is a non-stop rollercoaster of hope and despair. I am holding fast to my faith and just praying God will please allow me to return to health. It is amazing how we take health for granted and get bogged down by all the things that don't matter, then when this monster comes along, I know I would give up any of the foolish things I sometimes chase just to feel well again. If I could just manage the nausea I feel I could function. I am going to try the seabands today. I have been taking Zofran and phengram but they only seem to take the edge off. I haven't been to work in over a week and am afraid of what will happen if I do not get back soon. I am trying to rest in God in this as well. I will pray for you new friend, and pray for me as well. This is a nightmare but we are all strong and we can beat this thing! Hang in there and know you are not alone. I pray for everyone on this site on a daily basis. I hope this doesn't offend you, but I tell you I will take all the prayer, positive thoughts, good vibes, and support I can get!
Love and strength!
Dawn

momof327
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Re: The Good News & The Bad

Postby momof327 » Sat Jul 02, 2016 1:23 pm

Dawn,
Haven't been on for sometime, life kinda takes you in so many directions sometimes! I too used to be a productive part of society. Raising three boys as a single parent and being the typical "soccer mom". I actually embraced the challenge and loved the pace. I became disabled about 16 years ago and unfortunately my health deteriorated every year since. After fracturing my back, it was like a domino affect with one thing after another breaking down. I truly believe if it were not for my faith I'd be doomed to the dark depression that can overwhelm someone that is forced into a new and sometimes despairing reality of pain, doctors, meds and often times a dependency on others that is often humiliating. I've had cdiff now for 7 months and I honestly feel it's going to be "the last straw" at times.
I tried the seabands but they ended up not fitting my big bony wrists so no success there. I've heard some do get relief with them so I'll pray they help you. Phenergan is what I take but I find it takes the edge off but I get so sleepy after taking it the day is shot. Zofran does nothing for me personally but everyone is different. I hope your doing better. The nausea can really be hard. I know. I sometimes tell friends its like someone hit the nausea button but forgot to turn it off! I'll keep you in my prayers as well as I do everyone on this site. The people here are terrific and full of knowledge, compassion and support you can only find from others walking the same nasty path cdiff brings. God speed on your recovery. Sending "hugs" your way.

beth22
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Re: The Good News & The Bad

Postby beth22 » Sat Jul 02, 2016 1:31 pm

Momof327 - Are you still on medication for c difficile or are you finished? If you are still treating, maybe you want to talk to your doctors about doing FMT. It was what helped me.

Ril
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Re: The Good News & The Bad

Postby Ril » Sat Jul 02, 2016 8:22 pm

Terri, I was wondering how you were doing. You hadn't been on for a while.
Sorry you are still ill. I had hoped you weren't here because you were better.

Odd as it may sound, old fashioned cola syrup was the only thing that helped some with my nausea. Maybe it would be worth a try for you?

Rita

georgina
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Re: The Good News & The Bad

Postby georgina » Sat Jul 02, 2016 11:35 pm

Sorry you are still sick Terri. Have you tried ginger tea or peppermint tea , they can help with nausea . Agree with Beth , you might wanna look into FMT , you have suffered for too long.


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