Lost in a world of cdiff fun (sarcasm intended)

[miserylovescompany]

Need to get all this out of my belly, heart, and head. In July of 2011, after about four years of complaints and scans, I had a laparoscopic cholecystectomy because my gallbladder was functioning at five percent. The reason for delay was due to the fact every physician I saw believed my pain was "manifested in my head from stress" due to my mother's battle with a terminal illness (a theme which would return). I was in hospital for a couple nights and then discharged to attend my own wedding the same week. Yup, a lot of fun and incredibly stressful, but don't worry I have a good sense of humor... I swapped my gallbladder out for a new husband!

I began to notice by late August I was not recovering the way I should. I complained and complained. I was having terrible right sided abdominal pain, horrific D, and sweats. After more appointments and tests all through September (awful 28th birthday) my surgeon finally orders me a CT for October 5th. One hour after, I was in the most terrible pain I have felt in my entire life. I went back to the imaging department and they said, "Your surgeon hasn't called you yet?" and I ended up being admitted to the ER without any knowledge as to why. Discovered that night I had colitis, thickening ileum, crazy liver enzymes and ... seven hours later (drum roll please)...Cdiff!!!

Now keep in mind my mother is dying. She has been fighting a cancer recurrence since 2007. I was her caregiver and now I am now not permitted (as per her oncologist and my GI) to see her until I have three negative results. I'm administered Vanco, a few more nights in the hospital, and off I go. I have an allergic reaction and stop Vanco day 11 as per physician's orders. Then I am sent for a colonoscopy. Results say possible IBD, inflammation in seven different spots (colitis), and all this possibly due to cdiff infection. I beg my GI to retest for cdiff so I can get negative and take care of my mom. He will not. My D stops and my pain continues. By November I have the wedding reception I was unable to have in July. My mom, who will be dead in six days, is able to come and watch our first dance. She gives a little speech and all her friends are there knowing it will be the last time they see her. I see all my school friends I have not been able to grow up with over the last four years and needless to say the mixed emotions are overwhelming. We are happy and it is bittersweet.

So she dies in hospice as peacefully as she can this November. Ever the caring mom, she even manages to ask about my cdiff and colonoscopy the night before!! I am left robbed of my mother, robbed of the last five weeks I should have had with her, robbed of my newlywed period with my husband, humiliated to be so sick while she was dying (people saying cruel things at funeral), and test negative for cdiff but GI makes me test one day later and it is positive again. Still no D, in intense right sided abdominal pain, and very stressed. I am prescribed traveler's diarrhea pills and a bunch of "happy pills" because of course it is suggested (once again) my mother's death is stressing me out and I manifested all this pain. I am very very mad. Still, I repeat, still no D and all going normal down there, but that same physical pain is present.

It is now January of 2012 and I test positive again for cdiff. I am giving Dificid and by day five have to go to the ER from physical pain. The day before this ER visit I desperately visited my primary, urgent care, and my GI (who suggested another colonoscopy and asked if I was suicidal). The ER admits me and runs a CT, which makes me sick to my stomach and makes me you know what all over, and now I am worse off than prior to arrival. They say my scan shows colitis and a new GI arrives and stops my Dificid, says I will always test positive for cdiff but my problem is IBS, and discharges me with a script for dicyclomine. I have been on it for two weeks and it does not help. I called yesterday and he told me to take more. Still in the same pain and feel like I have exhausted all routes of help, save my faith in God, and now I can't eat half the things I used to before the last CT.

This website has been of so much help to me since October. All your thoughts, experiences, and advice have truly rescued me from some dark dark times. Know that someone is always reading and relating. I know nothing is permanent and that includes cdiff, but I am just completely lost now. Could this still be cdiff with no D? Can I have IBD still? Should I repeat colonoscopy? Will anything make pain stop? Can I manifest colitis in my head? Can Cdiff be in me always and never clear up? Should I just start all over? All I want is my life back in balance and my husband and I to be visiting the Dr. for a pregnancy, not GI complications. Though I have been laid up for three weeks this mega vent makes me feel a bit better. Off I go and wishing you all the best on your journeys. Misery certainly loves company heh.

[gm37]

First let me give you the standard introduction: Welcome to the site. Read the first forum ALL USERS READ THIS FIRST and its subtopics - especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in usuing the site and answer some of the most frequent questions. Read Dr. Borody's and Dr. McDonald's articles and someof the topics in CDI, formerly FAQ - especially Hygiene, Nutrition, Testing.

The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved such as advanced age or other severe health problems. If antibiotics contributed to your C diff, be careful about taking them again. (See CDI - Antibiotics). Some people can tolerate them withouta problem; some develop C diff again. (See Dr. Borody's article). For further information see http://www.peggymemorial.org or peggymemorial on Facebook and the Mayo Clinic web site.

You have had quite a time...but your sense of humor is wonderful! I am so glad that you have posted. I know you will get good advice and great support here.
If you have been reading here, you know that when you finish the Vanco and clear the infection, you still have a long recovery period ahead. It takes a while to get your gut repopulated with the good bacteria.
Glad you are here!
Anne

[Kathy George]

I am so truly sorry that you had to (and still do) deal with such a heart-breaking events. I am so sorry for the loss of your motheras well. Absolutely, you can have a test result that is positive without symptoms of “D”. However, a well versed GI/ID does not usually treat C-Diff without the warning sign of severe “D”. Maybe, your best bet would be to solicit feedback from an Internal Medicine doctor at the present time; not for c-diff, but all the other symptoms. You are a survivor; God knows, most people in your shoes wouldn’t be able to get out of bed each morning. Just remember, Keep the faith!!! Dealing with any illness can be devastating, but accepting our aches and pains is usually the first chapter in the Book of Wisdom. Now you need to right the last chapter which should read; Successfully Conquering all the Trials and Tribulations of life. Good luck and please keep us posted.

[gm37]

I have been reading and rereading your post. I wish I had some magic answers for you.
You cannot make c-diff appear. It cannot be all in your head. Of course, stress can always affect your health. Stress can irritate your IBS, but not cause c-diff.
I have had 4 colonoscopies in 4 years of c-diff. I don't know that they helped. Just gives the Dr information about what is going on.
Once you have the c-diff spores invade your gut, you will probably always have some living there. Hopefully, your normal gut bacteria will begin to keep them under control so that they won't be active and cause toxins that make you sick. Be careful about using antibiotics in the future.
Good advice from Kathy about visiting your internist to help you on your way to a healthy future. Mine checks my blood, give sme B12 shots and is often just a shoulder to cry on. She encourages me. We all need that.
God bless you and good luck. Please hang around and keep us posted about further adventures. We need your sense of humor.
Anne

[getwellsoon]

I think the advice to see an ID dr. is good advice. Do you take anything for your pain? I had a lot of pain with my CDiff and after also. I took painkillers and also took Advil for the inflammation in the colon. The Dr. said I could and it really helped me. Maybe you could ask the DR. if he could either prescribe something or could you take something over the counter like Advil. YOu are an inspiration to us all in still having your sense of humor with all you have been through and not to have completely lost your mind lke I thought I had. I had to go on Ativan, I was very anxious and depressed during my illness. I wish the best for you and know we are all pulling for you and are in our prayers for a recovery and to get on with your well deserved life. Carol

[JoElizabeth]

wow..God Bless you for all you've been through! I'm confused by your doctor who says you have colitis but tells you that your symptoms are IBS. I had pseudomembranous colitis, twice...it's painful! Anyone who insinuates that it's in your head somehow is completely out of touch.

Like others, I had to take meds to control my pain during colitis. At one point, I was taking nulev for spams, advil for inflammation and Vicodin for unrelenting pain, even though narcotics slow gut motility. But they got me through and I am now 10 weeks post-Dificid and c.diff free. I rarely need meds.

There are other meds that help with colitis and forgive me if you think I'm pushing meds but I guess I am! Sometimes they're a necessary evil while our bodies recover from the colitis. Have your doctors mentioned these meds? Asacol is one of them.

I am so so sorry that your mom died during all this and that you were prohibited from spending some time with her. Sounds like you are a great daughter and cared for her so lovingly. Now it's time to care for yourself.


jo

[beth22]

Unless I am reading your post incorrectly, it seems that your doctor diagnoses you with a CT scan. Have they done a recent colonoscopy or sigmoidoscopy? When I had problems post c diff, my GI did a sigmoidoscopy and took biopsies to see if I had Crohn's, ulcerative colitis, or microscopic colitis, etc. To me, that would make more sense than looking at x-rays. There are different threatmetns for different conditions. It may be that you still have c diff and if you do, then it needs to be treated. If Dificid did not agree with you, there are other options, even stool transfers. I opted not to have a colonoscopy done, but a sigmoidoscopy is much easier and you don't need anesthesia for it - just two Fleet's enemas. Have you had the blood test for celiac disease? A family member developed that after an intestinal infection - never had it prior ( not c diff, but e-coli). I think seeing an ID is a good idea too. The pain is coming from somewhere and they should look into it.

[Bobbie]

I've had personal problems lately but read your post last night and wanted to answer - had to ask Beth (thank you, Beth) where your post was - it was in the right place!

You've gone through hell and emerged with a sense of humor - which we need on this site. We have little except for Roy. I used to have one but lost it in Dec. after a series of problems. One of our original mods. - Allison - had a wonderful sense of humor. If you can laugh, you can live. I don't know if I made that up or it's a quote.

I am so sorry about the loss of your mother. I lost mine two years ago. She was the perpetual "mom" like yours - always concerned about me. I am much older than you are and so was my mom so we had years of togetherness. I am sorry you were robbed of that.

DOWN with docs. who say "it's all in your head." BS. If you "feel" (not know - "feel" is more accurate - especially if you are female) something is wrong it is.

I'd follow the other posters' good advice. Perhaps some of the meds. prescribed have slowed your GI tract and prevented D. - which is one of C. diff's common symptoms. If you had the PCR test, and it was positive, you probably do have C. diff. But I am not a doc. and you probably need to follow this up with (sigh) doctors.

Congrats. to your perseverance in all you've gone through. Condolences on the loss of your mom - who will always live in your heart. I am so sorry for your loss.

Know you have a home on this site. We can't give you medical advice, BUT we can listen to you and tell you what worked for us.

You are the ultimate warrior: a survivor!!!

[amyc]

Wow--definitely get a referral to an infectious diseases doc, and maybe go back to the GI doc who put you on dificid. The second one who stopped you mid-course and told you that you would always test positive is just factually incorrect. I've had quite a few negative tests since I got over C diff.

I do have the upper right abdominal pain. It's actually right under my lowest right ribs. It goes from not much to pretty severe. I had my gallbladder out because of the pain and because my scan showed only 6% function...but it didn't cure the pain. My new doc says it's gastroparesis, and there was possibly nothing wrong with the gallbladder. I was treated for H pylori 3 months after the gallbladder surgery, and am now H pylori negative, and have tested negative for C diff with PCR and the new LAMP tests too. My new doc wants to do a colonoscopy and EGD to take biopsies to try to figure out what's causing my continuing problems. Yay ... I'm just so excited to drink the prep and go to a hospital where the spores are everywhere, but I hope to find an answer to why I'm still in pain.

I've had CT scans and tons of blood work done, and the only thing they've found so far is anemia and transient low B-12.

If I get an answer I'll post it here, but I'm not sure when I'll get the procedures done.

[Bobbie]

I've also PMed her; believe Anne has, too, without a reply. Hope she is OK.

[JKK]

In case you come back to read this, or others are looking for answers. Hope you are improving.

Omg! I can totally relate to the pain. I have had excrutiating lower GI pain and been told it was in my head too. Mine was complicated by a healing postpartum hematoma the docs thought shouldn't be causing me that much pain. I have chonic pain from RA too, but this pain was completely unrelated. Some docs tried to tell me I was hypersensitized, when it is the opposite for me. I'm extremely pain tolerant from having to deal with joint pain since I was young. I take Tramadol for my RA pain and unresolved nerve damage from the postpartum hematoma and I feel it through that. For three months I had this unexplained lower GI pain then I had a full blown episode of C Diff. Once the infection was active and a doc palpated the area, she told me I likely had colitis from the C Diff lingering.

Vanco took care of the pain along with my other symptoms. I think I am having a relapse and the pain has returned too... I just started vanco again.

Take care

[Bobbie]

How are you doing? Is the C. diff. better? How is the baby? Let us know. We are concerned.