Symptoms come and go

[klt03301]

Hi all. I've been on this board since 2/08. I've had periods of good days and bad; actually I've found there is a cycle developing here. I went for several months in the summer feeling OK...better than I had since 2/08. In 10/08, started feeling really bad again and this lasted until Christmas Day. Since that time, I've felt better than I did even during the summer. I actually felt like I did prior to my C-Diff diagnosis...my old self. Well, for the past few days, here we go again. I never have "D". Just nausea, abdominal tenderness/low back pain, and SEVERE fatigue, along with something new...rumbling in my lower right abdomen. I know I don't have C-Diff. I've been tested too many times. I'm wondering now if I'll go through another lengthy period of feeling unwell. Has anyone ever experienced this? Feeling good for a 2-3 months, feeling bad a couple of months, feeling great a couple of months, and then the cycle just starts again? The fatigue is so bad I have to sleep much of the time and my body aches like I have the flu. I don't have the flu. I hope this doesn't keep continuing for the rest of my life. Is it possible something triggers the spores again, but I don't get C-Diff? It really doesn't seem to matter what I eat/drink. Whatever this is has a mind of it's own.

Would appreciate any response,

Karen

[fire7163]

Karen:

We could be looking in a mirror with this. My guys fully suspect that it most likely is a Gall Bladder issue, but can't obtain enough abnormal labs to justify the removal. My last HIDA scan was actually over active. So now it's become a wait and see thing. They are all in agreement that C-Diff and the treatment could be responsible. I totally understand your frustration. Some days I feel good and other days like a whipped puppy. No typical symptoms except for transitory fatigue and some dull pain, which seem to come and go at will. If you get it nailed down, let me know.

Fire

[cindym]

Hate to tell you but it has been 7 years since my diagnosis and I still have days where I feel like I have been hit by a freight train and have to drag my butt out of bed.........normal so I am told by doctor........yeah right!

[TheVike]

IBS or gall baldder or thyroid maybe?

[klt03301]

Fire, thanks for telling me about the gallbladder. I see my GI on 2/10 and will ask about this. If I ever find out what's causing this and what's taken care of it, I'll let you know. Let me hear from you if you do!

Vike, I know it's not a thyroid problem. Had those tests done so many times in the past year...all fine.

Cindy, that's exactly what it feels like...I've been hit by a freight train, and I'm so fatigued I can't even think clearly. Ain't nothin' normal about it! I was afraid this might become a pattern for me because it continues to happen. I have noticed this occurs when I have to "go" more often; I was feeling spasms in the right side of my intestines last night (not painful), but I swear I feel like I've got a bug of some kind, when I don't.

I'm inclined to believe it's severe IBS just manifesting itself differently than my pre C-Diff IBS. I know fatigue goes along with IBS, but this is WICKED fatigue. Ugh.

Fire, Kudos to you for still getting up every day and doing what you do. I couldn't do it. On days like this, I just have to get in my relcliner and sleep. You are TOUGH!

Fire and Cindy, can you tell me if it has gotten better with time...occurs less often than it did? I'm hoping that's a "yes"?

Cindy, I'm so sorry. 7 years is a long time to continue to have to deal with this mess. Too long! I wish I knew of something to just get rid of all the hell that C-Diff leaves you with. I know I should be thankful for all of my good days, and I am, but how the heck do you plan a life/schedule when you don't know when it's going to hit you again? I suppose that is my biggest question now, as I feel I'm going to deal with this for quite some time. Some days I just cannot function and the brain fog that comes with it makes me feel pretty useless. It even affects my memory. I can't remember today how to do something I did yesterday.

Enough of my whining. Things could be much, much worse.

Thanks to all of you,

Karen

[Bobbie]

Karen,
Many of us who had C. diff. (& some who then developed IBS) still have good and bad days, but it does get better. I have weeks of feeling fine & then weeks of "not so good."

I believe you are "an exerciser," aren't you? This has helped me more than anything else. I thought I would die from pain & depression when I fractured my vertebra and couldn't exercise. Now, after weeks of PT I am back in Jazzercise & have most of my energy back.

When I don't go to Jazzericse, I do the exercises the PT gave me at home. (Sometimes I have to bribe myself to do them.)

The more you do, the more you can do.

By the way, your posts are always supportive & informative. Thanks for your help on the site. And we all whine occasionally. It's the privilege (the only one) we "C. differs" have.

[cindym]

KLT- If you continue to be bothered by this beast (as I have) you have two choices.......go to bed and cover up your head and refuse to take part in life OR get up and enjoy the good days and cuss the bad ones! It has become a way of life for me but as time has gone by it really has become less of a worry and more of a nuisance. I recently just had bladder surgery (kidney stone imbedded in wall of bladder) and had to take microbid (which I had heard would be an okay antibiotic) NOT for me! Relapsed and am now going back through the same phases as in the beginning. Frustration is the word. I was at one vanco per day for 2 months and waiting until Christmas was over and planned to stop taking them altogether (without doctor being in agreement) and WHAM this all happened on December 23........Doctor on the 24th and the cystoscopy which turned into surgery on Dec. 30..........Life is Grand sometimes. I found out if you just relax and stop all the worrying and just roll with the waves it all settles out and you feel much better. I finally just decided that if it is meant for me to get over this crap I will and if not I WILL GO DOWN living as normal a life as possible. The spirit is still there- but the gut is failing! ha! I figure if this beast wanted to kill me I would already be dead as it kills usually within a short time frame unfortunately. Hang in there and stop worrying..........plan your life and go with it........bathrooms are everywhere but each day you miss out on can not be replaced.

[carrie]

Hey Karen,
Sorry to here you are not feeling well. I'm no longer have stretches of bad days but just a day or two at a time but that has taken a full year and some. The last time I went to see the GI a different GI from our University hospital came in to meet me(not sure why). He said from his observations those with post infectious IBS can usually expect to continue with symptoms for 3-5 years but that they should slowly lessen during that period. As much as I didn't want to hear that it has actually helped. For so long I've just wanted to get back to 100% and was so frustrated when things didn't improve. Now I know I have to continue to be patient. I started feeling so good I was running every day and was up to 6 miles but I noticed I started having a lot of cramping and way to many trips to the biffy so I cut back to fast walks on the treadmill with hills and weights reminding myself to be patient. I'm sure we will get damn close to our old selves we just need a little more healing time.

[TheVike]

solid YEAR for me to feel normal or close to it prior to c diff yes bad days aqnd good days but mostly bad turnrd to better and good! I suppose Karen like all of us are just worried as hell about getting it again and i am hearing what you are saying I think WE ALL God forbid get it again will at least KNOW what it is and be better prepared for it IF it strikes again as we were not the FIRST time whivh had us ALL so terrified! :)

[klt03301]

Thank you all for your encouragment and support. It means so much to me. I haven't even hit my 1 year anniversary yet, 2/24 coming up. This last great spell made me so hopeful, so I was very disappointed when this "ick" hit me again. I do exercise often and it keeps me feeling well and strong, until...I get hit by this fatigue and nausea. I can't work out on those days, but just feeling back to my old self for 23 consecutive days (which I haven't felt that good since C-Diff) gives me hope that I'm going to get there eventually. I just get so disappointed when the bad ones hit. I have to learn to roll with it and not be surprised when it happens. Knowing that it gets better with time gives me HOPE. I know I'll learn to adjust.

I appreciate all of your responses. The people I've met here are so incredibly strong and you are all an inspiration! YOU are the reason I stay here and try to encourage others, because without you I would have been pulling my hair out trying to figure out what was happening. A kind word never hurts anybody :-)


Cindy, I'm really sorry to hear you got the beast again and going through the same phases as in the beginning. I'm going to try to adopt your attitude, "enjoy the good days and live as normal a life as possible". I usually do; I just have to learn how to cope better w/the bad ones and not get so disappointed. I hope you get through this bout as quickly as possible! I enjoyed this line "the spirit is still there-but the gut is failing." You're sick but you still keep your sense of humor through it all. I'm taking notes from you, and everyone else who has been through this mess.


You are all in my thoughts and prayers. Thanks again,

Karen

[jenkelly15]

Karen I am so sorry to hear you aren't feeling good. I too like you was going great for a couple months and then I'll have a couple bad days. But I am pretty lucky because it is usually only a couple days. I am guessing this must be the recovery time or something I am hoping. I too have been extremely tired lately, but I did just recently stop my thryoid medication so mine can be that or maybe it's something else who knows anymore. I'm sure whatever is going on with you it will stop soon and I hope your great months you had will become permanent. Good luck Karen and you are a a great support to so many of us of this site!!!

[klt03301]

Thank you, Jen! My bad days didn't last long and I'm up and running again. I almost hate to say that for fear of jinxing myself, but I've had some good days since I first posted about this. I'm back at the gym and working out, which is making me feel better.

I know you had a colonoscopy last year and I'm supposed to have one on February 20th. Jen, you know I get really anxious about this stuff, and my 1 year anniversary is coming up on 2/24. I had to do the whole prep thing before my hysterctomy last year and that was so harsh...and I came home w/C-Diff, so my brain links that prep to the onset of the worst year of my life. I don't want to have it done; but, since things still aren't right (and that may be normal), I think I should go ahead and do it. My dad had colitis and was told if they couldn't get it under control he would lose his colon, so I'm wondering if I have some sort of mild Inflammatory Bowel Disease that has been triggered by C-Diff. I've lost 5 pounds since October...not trying. I also don't want to lose any good bacteria I have built up. Your doctor told you that wouldn't happen, correct? I see mine on 2/10 and will ask, but I'm struggling with the decision about having it done. I don't dread the procedure...I dread the prep and the anxiety that I'll have with it. I really would like to hear that I don't have anything other than PI IBS going on. Ugh. What to do...

Karen

[Hua Kul]

Hello Karen. You made a couple of very interesting statements, <b>"I never have "D". Just nausea, abdominal tenderness/low back pain, and SEVERE fatigue, along with something new...rumbling in my lower right abdomen. I know I don't have C-Diff."</b> You <i>may</i> have a C. diff. infection in your cecum. (This is a small part of the intestine just before the ascending colon. The appendix attaches to the cecum.) Nausea and lower right abdominal pain are two of the symptoms. Typically it does NOT cause diarrhea (only about 6% of the time). The extreme fatigue could be caused by your body's immune reaction to the infection, just as it responds to the flu. The body produces excessive levels of various cytokines and the better your immune system is the worse the reaction can be. (This is probably why so many more young people died in the flu epidemic of 1918 than were expected, the immune systems of many older people were not robust enough to kill them.) Unfortunately, I'm not sure if a lab will test for cdiff if there's no diarrhea, and I don't even know if the test would be reliable in that case. This seems to be a pretty much overlooked form of cdiff. Dr. David Moskowitz in St. Louis has developed a therapy using existing FDA approved drugs to quench a cytokine storm, which would help your fatigue if that is the cause. He has a site under the name "Genomed" and he's pretty approachable, I've exchanged emails with him in the past. All the above, of course, is just my opinions.

God Bless,
--Hua Kul

[klt03301]

Hi Hua Kul. Your post is very interesting to me. I found where the cecum is located and that is exactly where I have the pain. I did some research on GenoMed and the Dr. you wrote about. I contacted him by e-mail and I hope to hear back from him. He is also interested in fibromyalgia, I see, and I have that, too (though it's mild most of the time). I'll let you know if I hear from him.

Many thanks for your response!

Karen

[Hua Kul]

Thanks Karen. I hope Dr. Moskowitz gets back to you and can address your fatigue issue. Originally, as far as I know he did not have an interest in cdiff, but 4 or 5 months ago I wrote to him and suggested that toxic megacolon may be the result of a cytokine storm in response to cdiff. I haven't heard back from him on that.

Anyway, I wish you the best of success.

God Bless,
--Hua Kul