Thoughts and worries about recovery

[fanon]

Let me begin by saying thanks for the help I got when I first posted about my case last year. The replies I got, and reading in other threads, have helped me understand this disease.

To sum up my situation I became ill last spring. From reading your stories on the forum I might have gotten off easy but I guess every case is different. My symptoms in the beginning were nausea, diarrhea, fever, a burning sensation in my gut, feeling tired and hand tremors. The fever went away but the other symptoms did not. In Aug 2015 they found traces of C Diff toxins in my stool sample. I did a lot of other tests but everything showed up normal except a high blood pressure. My doctor put me on Flagyl for 10 days, during which I became worse. This was followed by a diet and more tests. The tests still showed toxins but the doctor said it was normal and that I just have to give it time.

In december the test didn't show any toxins and the doctors informed me that it could take about 1-2 months before I was back to my old self again. January and February was quite bad but in March I started having periods of days where I felt better. This situation has continued. I have a few days that are good followed by bad days. My doctor has told me to eat normally but I avoid dairy and spicy food. I try to eat quite healthy and haven't noticed any connections to what I eat and the bad periods.

I did a colonoscopy back in March. Everything looked normal and all tests were negative.

I'm going back to see my doctor in two weeks to talk about my continued problems. During bad days my stool becomes watery and loose (it's quite loose even during good days), I feel weak, get chills, become thirsty, get hand tremors and I sometimes feel dizzy to the point of almost fainting. How is hand tremors connected to this disease? Stress on the body and mind that shows up in weird ways?

Any suggestions what I should talk to my doctor about, is there something they should be doing that they might have overlooked? The two doctors that I have been seeing doesn't seem to know much about C Diff but they have been in contact with a infection specialist. Is there some medication I could be taking that ease the healing process? I have been eating probiotics since December.

I'm trying to think positive, that things are slowly moving in the right direction but during the bad days this is very hard to do. I used to be quite active but haven't been able to take up my old hobbies because of the bad periods. Seeing how it's been over a year it's taken a toll on both my work and social situation. Friends grow tired of me cancelling at the last minute and bosses give assignments to other people that are more reliable.

Thanks for the support and good luck to all others struggling with this.

[Cm1619]

Hi there. So sorry you are dealing with feeling bad from those symptoms. I also got rid of my c diff with one round of Flagyl. I don't know if this will help you but I have had similar symptoms in my recovery right now. I've only been recovering for about a month now. I am almost certain mine are due to anxiety. I had a lot of general anxiety before the c diff and most of my anxiety came when I was sick so you can imagine the anxiety during and after c diff. I get nausea at night sometimes with shivers, IBS in the morning, shaky when I start to think about relapse, and often have to cancel plans when I have an off day. I know the second I wake up if I'm going to feel good or not. Maybe talk to your doctor about anxiety? Try getting lots of sleep, water, and relax if you can. Definitely don't ignore symptoms and it's good that you're seeing your doctor to get answers.

[Acres]

Hi,
Very sorry you have been suffering for over a year...
Stress and anxiety is a huge factor in my recovery. Ever since I have made an effort to control my thinking (stop 24/7 worrying) by keeping mentally and physically active, it has been helpful....I have Xanax, but only take it if I am really stressed out...

I had a very bad "urge to go" almost constantly and very thin, loose stools - I took Pepto which seemed to help both issues.
I take Florastor and VSL3 probiotics daily (the vsl3 seems to stabilize my gut), papaya enzyme and dgl licorice (which helps my digestion)...

I wonder if you have some food intolerances ? I developed some....

Are you taking vitamins ?

My primary doc. really believes in blood tests to see if I have any other problems or deficiencies.

Hope you feel better soon,
Scott

[Ril]

Fanon, I am sure when you were on the site in the past you were greeted and introduced to the rules but since you are listed as a brand new poster, as a "refresher" please read the first thread on the home page entitled "Please Read Before You Post". Sorry you are still feeling ill.
With that said, I think if I were you I would look to make an appointment to see an ID or GI dr myself rather than relying on drs who you think are unfamiliar with c diff and are consulting with experts. If I were still feeling ill as you still sometimes do I would rather see those drs myself firsthand and have them treat me. Whether or not this is still c diff, I would want a specialist to evaluate me.
While it seems as though we all have had some varied difficult symptoms throughout recovery, some of yours may or may not match up. The good news is a recent clear colonoscopy. If you are feeling stressed you can certainly ask for medication to help with that. Nausea and some erratic stools are very common however you don't say how frequent your loose stools are. We cannot give medical advice, but I can tell you that if it were me at this point with weakness, dizziness and tremors I would be making that other appointment.
Keep us updated please and I hope you start feeling better.
Rita

[beth22]

If it were me, I would probably ask my doctor to do a full panel of stool tests to rule out any other possible pathogens, including parasites. We have had posters who had various infections after c diff. I would also ask to have vitamin levels like B12, B6, D, folate checked. Your iron and calcium as well. Many of us have had vitamin deficiencies after c diff and have needed to supplement. Even a deficiency in vitamin B12 can cause problems and GI issues. When I started taking vitamin D, which I was low on, my stools got much better.

There is a medical food called EnteraGam that is given for IBS-D and it has helped several posters. My GI highly recommends it. You need a prescription to get it though. It is not a drug or antibiotic, but something to boost the GI immune system derived from cow immunoglobins, I believe. I would ask your doctor about it. It may be worth a try. Pepto helped me, but it really just masks the symptoms, unless you have some bad bacteria and it can actually help a little with that. But, I took it way too long and when I finally got off of it, I felt better.

[fanon]

Thank you for all your answers and thoughts. I forgot to add that I'm 35 year old, male.

I'm sorry to hear about your anxiety issues but it feels relaxing to hear that others have devolved anxiety as well. When I think about my situation logically I actually think a lot of the problems I have are connected to anxiety even if some physical issues with my stomach remains, which of course triggers more anxiety. I can really related to what one of you wrote about waking up and knowing almost instantly if it's going to be a good day or a bad day.

I have been taking D vitamins the last 5 months, mostly because we get very little sun in the winter where I live. But I will see if my doctor can run some tests to see if there are any deficiencies. They have done tests to check for parasites before so that shouldn't be an issue.

I only need to go to the toilet one, or max two times a day, so that feels very good. But I often feel the need to go very quickly when I do need to go, but usually if I calm down my stomach settles and I can wait so I guess that is also stress/anxiety related.

I will give you an update when I have seen my doctor in about a weeks time. I'm still having days with high anxiety but it helps to think that it's not uncommon to feel like this. Seeing how I can stress out about every day things it's not surprising that this illness have me worry as well. Thanks again for all your support.

[amyc]

At the risk of sounding like a broken record, try taking 2 Claritin a day. C diff can activate a population of immune cells called mast cells that are prevalent in the gut and brain. When they are over active they dump large amounts of histamine which causes unpredictable bowel blowouts and anxiety among other symptoms.

[beth22]

I would not take Claritin twice a day without checking with your doctor, since the recommended dose is once a day. For some people, those medications don't agree with them. I am one of them. Antihistamines drop my blood pressure very low and I feel as if I will pass out sometimes, so do check it out. There are blood tests to check for mast cell disease. I had them and mine were negative. It would be a good thing to ask your doctor about when you have your appointment, since it is a possibility.

[peanut]

i had cdif for almost 2 years back in 2007...the mental anguise was just as bad as the physical, somedays worse...just was diagnosed again with the beast about a month ago after taking antis for pneumonia. same exact symptoms as i remember before both to my mind and body...the anxiety with this thing is just through the roof...as with you my hands shake everyday i get up...sometimes dizzy...weak and tired...constantly thinking esp when having to go to the bathroom..not to mention the physical horror on the body...ill tell you back in 07 during cdiff and after cdiff I went through so many different doctors and had so many tests done to my body cause I just felt like there had to be something else wrong with me besides the cdiff or the cdiff was causing other diseases...turns out for me after the disease had gone I did get IBS from it and cystitis in my bladder...mostly all the rest was due to anxiety taking over...as far as recovery there are good days and bad days seems to go back and forth i have to say the first time the recovery for me was a long process..it took me a good year before my anxiety and physical symptoms went back to normal...or normal as can be I should say...I take anxiety meds they help a lot maybe ask your doc about them...hang in there you will make it through this

[Bobbie]

Agree with Beth bout Claritan. Check with doc first. It did help Amyc.

Welcome back to the site, Amy.

[fanon]

Waiting for the test results now. He (new doctor again) decided to take a lot of tests. Can't remember all of them but vitamin deficiencies were among them. He was both surprised and somewhat confused how I got it in the first place and why it was taking so long for me to recover but other than the tests he didn't really see anything else he could do right now.

Should get the results this week. It's a weird feeling not knowing if you want it to show everything to be OK or that something is wrong. If everything looks OK I will talk to the doctor about anxiety and Claritin and how best to proceed with that.

[NanciT]

fanon,

Glad you are seeing a new MD, is he a GI? I had to change mine twice during this CDIFF journey. Many don't realize how long it can take to recover and get the gut back to a new "normal". Having the test will rule things out which is generally what they end up doing to make sure nothing else is going on. For some, the recover quickly, I was on treatment for 10 months and the recovery is much longer for me with Post IBS. Here I am 1/1/2 years later with good days and bad days but all in all....feeling so much stronger. Its been a long journey.
Hopefully the tests will be negative and you will find more good days outweigh the bad and what foods you can slowly add.
NanciT

[georgina]

Hi Fanon
Like Nanci said , for some of us it takes a long time to recover , nobody can tell you how long. I am almost seven months out from my FMT and i still have good and bad days , i get IBS symptoms at least once a week but i'm not keeping a diet anymore. Your good flora needs time to get reestablished , and that takes a long time.
It's a good thing that you want to keep your anxiety under control , but be carefull because antianxiety meds can be a little addictive if they are taken for a long time. I found that antianxiety treatment has helped me alot with my GI symptomes , hopefully it will help you too.
Good luck!

[fanon]

Hello again

Have been away for a while, trying to focus on other things. Reading on the forum helps but also makes it hard to think about any thing other than cdiff.

My new MD is not a GI, without test results showing something I can't get a meeting with a specialist unfortunately. The test results all showed normal values so my MD's conclusion was that I'm still recovering from the infection. Vitamin B12 was at 208. He said normal values range from 150-500. I did buy some B12 vitamin from the store anyway. Iron was normal. Blood count was good. Sedimentation rate was at 8 mm which he said was excellent. I forgot to ask him about anxiety pills and/or Claritan.

So all good. Except I don't feel good. I have a few days that are fine/ok and then most days there are issues. My bowel movements are more regular now and that part feels normal. But almost every day I get nausea, fatigue, aching in my arms, dizziness. This last for several hours. The nausea is usually worse in the morning and the fatigue worst in the afternoon, at the end of the work day my whole body just want to lay down. Some of the time this is followed by bloated stomach and a small pain, almost like burning sensation, 2-3 inches below my navel.

It's been 8 months now since they said the cdiff was gone. From reading on the forums I realize I'm far from alone having problems even after it's gone. I have noticed that the problems are stronger and more frequent when I'm at work so it seems to have a lot to do with my stress level. My work is not that stressful but I always worry that I will become ill when at work. The memories from working while things were really bad are still very much in my mind. Should I consider anti-anxiety medication or insist the doctors take more tests? They seem to feel they have done far more than what is needed since all tests are OK. I've dealt with depression and anxiety before but never taken Xanax or anything like it. If stress is the cause it feels like I'm in a spiral I can't get out of. The anxiety feed the symptoms and the symptoms feed the stress.

To end on a good note, I did manage to convince my self to book a trip to visit my brother and his wife. I couldn't go to their wedding since I was really sick back then, but it was good to see them both.

[Lisa33]

That's great that you booked that trip! And congrats on being c-diff free for 8 months! For some, recovery can take so long. It's good that you had a blood workup to rule out any deficiencies. The symptoms that you can describe are very common symptoms, and can be just from stress and anxiety. The only thing that came to my mind after reading your symptoms was to ask you if you have been tested for any autoimmune illnesses such as thyroid, rheumatoid arthritis, etc as these symptoms can be indicative of some of those type of illnesses. However, your doctor would know if you should test any further. As you said, stress can be a big trigger for physical symptoms, so it's good to find ways to try to bring down your anxiety. Some people need meds to do it, and others use therapeutic tools to control it. That is something that only you can determine.

In any event, although you are still suffering with these symptoms, it is so great that you are c-diff free and doing well GI wise. That is awesome!
Lisa