Extreme childhood CDiff; Adult after-effects.

[KatieSki]

Hi there, I was diagnosed with CDiff 16 years ago at the age of 5. I was hospitalized for well-over a month, if not two. From what I was told, I was on my death bed due to being so young and how far gone the disease was. I am now 21 and I have tons of health issues; i'm unsure whether its from my previous illness with CDiff or if it's even possible to have these everlasting issues due to the disease. To start off, I can't eat "normally" and I have never been able to. After every meal, since the age of 5, I have suffered from intense stomach pains. The only way to relieve the pain is to either lie down, vomit, or simply not eat. This has caused many problems in my life, socially and personally. I am not bulimic, but I vomit more than the average human should due to these pains. I made the decision almost two years ago to go vegan... not so much for the animals, but for my health. It helped tremendously in the beginning, but the longer i'm vegan, the less it helps. When it comes to using the restroom regularly, I don't. Maybe every 3-5 days. I have gone two entire weeks without using the restroom once. My body tries, but its as if my mind is saying "no". Whenever I do go, I feel gross, and get a little bit of anxiety from it and want to shower immediately most of the time. When it comes to my stool not being solid.... I wont go. I refuse to go. I cry actually, because I hate it so much. I know thats not healthy, but I honestly can not help these things. I am, and always have been very fatigue for no reason at all. My anxiety has been through the roof since I was young, and I know its an issue. My body aches ridiculously... from, joints to bones to muscles. My immune system is shot. I am constantly sick or feeling ill. It's normal for me and I have found ways to get use to this issue and adjust.

My mother never took me to the doctors for these issues when I was younger, I just had to learn to get use to these things. Her diagnosis... pure laziness that I needed to fix myself. Yes, I have been to the doctors many times since i've had CDiff, but my pains were always growing pains. I was given stool softener, and tylenol. Nothing ever screamed out "CDiff" I assume. And maybe its not caused by CDiff, but after reading some posts on this forum, I believe it could be. At the age of 21, I shouldn't feel this way.

I apologize for the lengthy post, but any information you can give me will be greatly appreciated.

Thank you!

[roy]

Nothing like c.diff symptoms.
Have you been tested for other things like Crohn or coeliac?
sounds like a trip to the Dr is needed and don't take your mom!

[Lisa33]

Hello KatieSki - Welcome to the forum. Please read the first forum for new users on rules of posting, standard intro, etc.

I am so sorry that you have had to deal with these GI issues for so long and at such a young age. I agree with Roy. This doesn't sound c-diff related. Have you been to a good gastro doctor? I think in your case, an endoscopy, colonoscopy, celiac tests, and whatever else should be done to see if there are any IBD's, etc. Have you undergone any testing over the years? Although these tests are invasive, you should seek to find out the cause of your symptoms. It can be something easily treated. Have you ever tried taking probiotics, as they can be helpful in maintaining some digestive regularity.

I hope that you can get a good doctor and get to the bottom of things. Anxiety can also lead to GI issues, so getting that under control is definitely key as well. Some people need to take meds for anxiety and seek therapy. There is nothing wrong with that. Anxiety can make you physically unwell.

[Musings]

Agree with both Roy and Lisa, your symptoms sound closer to Crohn's than c.diff. The tests recommended by Lisa should provide some answers for you. If you want to go slightly less invasive to start, there are standard blood tests to check for inflammation markers and the fecal calproctetin fecal test both of which can help indicate IBD (Crohn's or Ulcerative Colitis).

~Lauren

[beth22]

If you are that constipated, I doubt you have either Crohn's or UC because those cause D. You may very well have a motility disorder. I know there is such a classification as IBS-C. The new thoughts on this, from what I have read, is that bacteria is at the root of it - the wrong kind of bacteria causing an imbalance.

I would recommend that you see a GI motility specialist or at least a good GI that could point you in the right direction. SIBO can cause these symptoms and the test for that is a breath test. Previous infections can cause SIBO, so in that regard, having had c difficile, could have been a contributing factor.

In the doctors forum here on the sight, you will find a list of GI doctors in various parts of the country. I don't know where you live, but hopefully, there is one listed near you or you can call a major university hospital and ask for their GI department.

[amyc]

I highly recommend Dr Lawrence Afrin at the University of Minnesota medical school. He wrote a book that came out in 2016 that you really need to read about mast cell disorders. He will work with your local doctor once you are diagnosed, but please, please consider seeking care from him. Here is a link to his book:

https://www.amazon.com/Never-Bet-Agains ... ence+Afrin

Yes, all those lingering health problems could have resulted from your suffering from severe C diff. I am so sorry to hear that your mother is so unsupportive. I pray you can find support and get the medical and emotional healing that you deserve.

[Ril]

Katie, the bottom line is we can all conjecture about what your diagnosis is but one thing it is not is c diff. And you definitely should see a good GI dr who can do a good evaluation and find out what it is. There is no reason you should spend your life suffering like this and not try to get help. Although I am sure your mom means well she apparently does not understand your physical needs so at 21 you are capable of getting your own help and should go and get it.
Also, with your degree of anxiety and related symptoms, don't be afraid to think about getting counseling. It might help you cope.
Rita

[georgina]

Agree with others , go to a specialist , get tested for anything under the sun , especially for IBD , diverticulosis , do a colonoscopy to see what is going on inside. Do not blame CDiff because your case doesn't sound like Cdiff , it must be something else that is making you sick.

[Bobbie]

Agree. Get other opinions. Do not give



up hope. I have had c diff a long time and lend an almost normal life. Some have good luck at Mayo.

Best to you.