Is there hope?

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sevla
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Re: Is there hope?

Postby sevla » Fri Jul 10, 2015 9:41 pm

My IM doc said the same thing - no wonder I screwed up my GI tract. Any boils in thr past were always treated with antibiotics. Never lanced, nothing..ugh

Like this one today - why did he say bactroban will work when he first said bactrim!? Either or..make a decision and a call. If topical stuff would do it, why to go immediately to an antibiotic!?

NanciT
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Re: Is there hope?

Postby NanciT » Fri Jul 10, 2015 10:47 pm

I completely understand your post and have such compassion for each and everyone of us who sadly finds this site due to having CDIFF. I know that what you read can be confusing, one thing is we all know everyone is effected differently. The information our there for physicians and all health care providers is NOT up to date and each time I have the opportunity....I tell them just that.

I have been doing just fine until I developled pain in my left side 3 days ago...along with other symptoms. I ended up in the ER this morning for several hours and thankfully the CT showed no diverticulitis(thats what started CDIFF for me) and I took in a sample for a NEGATIVE CDIFF. I was very happy...but told this is POST IBS....so for me I can be feeling great and then something comes up and I have more fear than I ever have.
It takes a toll on mental health and we all do worry. Today I told both nurses taking care of me to be very careful..especially working in an ER. I explained that they have no idea how difficult this is to get rid of and reading online that it's found in the elderly and nursing homes is correct but it also is right there in that hospital!!! Sometimes they look at me a little strange but honestly I don't care, whatever it takes to try and educate people, especially health Care providers...so many are in the dark on this.

You WILL get better, we all find our way through the up's and down's of not only the illness but the long recovery period.
One very positive thing, you will always find support here, people listen, take the time to write and honestly care about each other. It's difficult for others to really understand this illness, unless you have walked through it.

notheidi
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Re: Is there hope?

Postby notheidi » Sat Jul 11, 2015 2:07 am

Jackie, I loved your post!

Yes, relatively short time periods can feel like a lifetime with c diff. I guess it's only human to compare, but there's plenty of pain to go around, unfortunately. : - \
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize

Lisa33
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Re: Is there hope?

Postby Lisa33 » Sat Jul 11, 2015 8:19 am

One thing I know for sure is that there are a lot of very STRONG, intelligent people on this site, who inspire me everyday. It's ok to feel down and have the pity party while battling this dreadful illness. If you didn't, you wouldn't be normal. But everybody leans on each other for support, and picks themselves back up and battles on. It just absolutely stinks that some have to suffer for years and years. However, they are the ones that provide amazing information and really have helped many others on this site get through this. That to me is the one positive that comes out of this awful sickness - being able to give back to others, support and educate others on c-diff. For many, this site is really their crutch during the hardest of times. I know it was for me. Hopefully a cure is in the near future and people will not have to suffer for so long anymore. In the meantime, gotta keep going and battling through. That is the only choice.

Nanci - So glad your pain was just IBS and not c-diff or diverticulitis. What a relief I'm sure!

Lisa

sevla
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Re: Is there hope?

Postby sevla » Sat Jul 11, 2015 10:36 am

Thank you all! Nanci, I am also bery happy that this it was just PI IBS, but I am sure you felt very afraid and stressed. It is a roller coaster with this thing.

Thank you all again - this site has definitely been my crutch and I trust your advices than I trust some of the advices from my doctors. It is a blessing for all of us that some of you have decided to hang around and help all the c diff sufferes that come and go from this site. It is like a virtual family that we never met but that it is there to hold us and support us no matter what. Thank you all again - you are a very kind hearted people.

I hope today is a good day for everyone!

Bobbie
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Re: Is there hope?

Postby Bobbie » Sat Jul 11, 2015 3:07 pm

Sevia,
Sometimes you have to experience something to be empathetic about it. Wonder if more docs. developed C. diff., if we would see an increase in their knowledge and compassion? You get we would. Glad the site has been helpful.

sevla
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Re: Is there hope?

Postby sevla » Sun Jul 12, 2015 3:30 pm

I totally agree, Bobbie. I just read the article that Nikki posted in the media report section. It makes me very mad that hospitals are just not diligent about cleaning the rooms with bleach and stuff. I was for 3 days in the hospital where I must have ingested the spore - NOBODY cleaned my room once during those 3 days...

susant
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Re: Is there hope?

Postby susant » Sun Jul 12, 2015 3:48 pm

I feel like the more I research the more scared I get. The article has the word "killer" in it. Makes me feel like I'm doomed to die from it. I have been free for a year but am so paranoid after reading updates on here of people getting it back all the time or people dying from it.

seekingcure
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Re: Is there hope?

Postby seekingcure » Sun Jul 12, 2015 6:38 pm

There are lots of new cures or preventatives in the pipeline and that is what gives me hope. Can't come soon enough.
Bea

august14
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Re: Is there hope?

Postby august14 » Sun Jul 19, 2015 2:01 pm

When I first got it diagnosed I thought "oh good, I'll take the meds and be back to normal in a week or two." HAH! So yeah I can totally relate to the "it's been 2 months, I can't do it anymore!" Because if you've never been sick that's how it feels. Now I get "mad" (not really) when I hear other pregnant people complain about weight gain and cravings or occasional GI stuff. I wanna crave ice cream and gain an extra pound too! But I'm ok enough to be out of the house so I try. For awhile I was kind of "waiting" to get better but it was negatively affecting not only me but my family and my two year old who I was not taking to all the activities I wanted to. I already have to spend way too much on probiotics and meds and what not so I don't want to let it rob me of all the experiences too although some are inevitable. I've learned that the more I compare my experience to someone who hasn't had this the worse I feel and I'm only hurting myself. I vent to my husband but then I try to move on. I know it could be worse, and am hoping there's a vaccine around the corner...

sevla
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Re: Is there hope?

Postby sevla » Sun Jul 19, 2015 8:26 pm

Hi ausgut14, this is as much of a mental game as it is physical. I spent the last (almost) 3 months at home feeling sorry for myself. There were a few good days that I was able to go to the office and feel norm again, but after 17 days off Dificid and think I was on the right recovery path, I relapsed. It was the toughest thing ever as I was so hopeful I had beaten the beast. I am now on day 14 of Dificid waiting for my FMT this coming Friday. I am so afraid of it that I am trying to keep myself as busy as possible and enjoy the now. For the first time in 3 months I decided to enjoy myself and go out with my wife all. I went out for dinner for the first time since c diff, I went to a little beach for the afternoon, etc. Before c diff I traveled the world for work and leisure and was never a full day home. So c diff rocked my world upside down. However I am trying not to let it consume my thoughts and actions anymore. Its hard, but I am trying and doing better. I still worry every day about my skin (fear of staph) and about c diff - however I am trying to accept that I just have the now and that's all I can enjoy and live. I don't know if it will ever get back to my old life, but I have to make the best of whatever happens moving forward. It's hard to accept a change in life habits, so hard, but I will live for the now..

Hope you feel 100% soon and I am sure it is difficult when there are small ones involved. Sending positive thoughts your way and to everyone!


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