Six weeks off Dificid/tips for the fear?

[NikaNik]

Hi, friends!

I'm, very thankfully, six weeks off my Dificid taper. Does this sound normal for this stage?

-Only had D 3-4 times during the six weeks (on different days - 3 were watery-ish). Usually I go 1-4 times a day (typically all in the morning but sometimes spread out). First one Is occasionally a perfect-looking BM but sometimes it, and/or the follow-ups, are piece-y piles or just today a floaty, grainy one.

-I swear I can still smell it and my stools are brown but when I wipe there is yellow/orange mucus.

-Energy is good. Appetite is not fully back.

-Sometimes I feel like I have to go even when I don't.

I start my day job back next Wednesday (two hour commute by bus each way). Scared of relapsing, having uncontrollable D commuting or at work, ending up in a hospital far from home, going in my pants etc. even though that's never happened. My dad has Crohn's (no other GI issues in our family and his came at age 50 - he used to be a chain smoker and alcoholic so not sure if it's hereditary). I get nervous the c diff will trigger that in me or some other type of incurable colitis. Is that common? Any phrases you tell yourself to stop the fears and ease your mind in public?

Thank you!

I want my guts of steel back.

Nikki

[seekingcure]

Nikki,
This sounds like a normal recovery to me. You have had a major infection in the colon and it is going to take time to heal. Although I am not a medical person by any means, what you have going on now sounds like post-infectious IBS. I have had IBS for many, many years prior to ever encountering C-diff and my symptoms of IBS were very similar to what you are describing, specifically, several bowel movements in the morning, but none the rest of the day usually. I would occasionally have issues at night if I went out to eat and ate something greasy or too spicy, but usually everything was in the morning. What my GI explained to me is that once my colon started having spasms to evacuate the stool, the spasms did not stop until everything was emptied out. Do you take anything like Levsin or Bentyl for the spasms? One of these taken at bedtime might help some with the morning issues, although, honestly, I always felt better for the rest of the day after I was cleaned out in the mornings.

The thing that seemed to help me most after my last bout of c-diff was adding homemade kefir and fermented pickles. If this is something you are interested in exploring, there is lots of information to be found on the internet regarding fermented foods. Just google it. There seems to be a huge interest in using naturally fermented foods to heal the gut and restore health. Like I said I prefer to make my own kefir. Email me and I'll tell you where to get the grains. I would offer to send you some if I hadn't tested positive again; but, even though I don't touch the grains with my hands, I just wouldn't feel comfortable sharing them right now, just in case. I also buy Bubbies brand dill pickles and sauerkraut from Whole Foods and Earth Fare. Neither of these is my favorite thing to eat, but I can get them down. I am currently trying kombucha and may try to make that when I feel better.

Also, Nikki, the further you get out from c-diff, the less you will think about it. Believe it or not, there will be days when you don't even check this site, lol. You are young and generally healthy and you just have to keep moving forward. Think about how much better you are today than you were six weeks ago. Progress may be slow, but you will eventually regain your health and put c-diff behind you. Keep your chin up. Getting back to your regular job may be good for you and it will help to keep your mind off c-diff.

[NikaNik]

Aww, Bea! You're so sweet. I haven't tried Bentyl or Levsin. I drink plain Kefir every day (skipped yesterday because hubby and I photographed a 14-hour wedding - that's my other job). I also drink Kombucha, take Florastor once or twice a day and I'm also on Enteragam twice a day. I was also taking a 20 billion refrigerated probiotic but don't want to overdo it so I cut that out a few days ago. Maybe I'll pop it once or twice a week or something. I just hear stories of this triggering other issues (colitis, UC, Crohn's) in folks and it now it frightens me to be far from home/get out in public without worrying about it even though I get out anyway.

Wish there was something I could tell myself and repeat over and over that would calm those thoughts. I used to have a super voracious appetite (I've always been tiny though!) and I miss being hungry and just eating whatever I want. I LOVED food. Praying I get back to that one day, although from what I've read that doesn't seem likely. Very frustrating.

[Lisa33]

Hi Nikki - What you are describing is very similar to how my recovery went, especially in the first couple of months. I too, went 1-4 times in the morning, and was fine for the rest of the day. The first time was always more formed than the latter as well. My stools stayed on the yellowish side for quite some time. I have no idea why that is. I thought maybe it was because I wasn't eating a lot of red meats, vegetables or fiber. My stools still tend to be on the yellowish side. After 6 months, my stools are still not consistent. They vary from formed to mush, but finally I seem to be going once every morning. However, as soon as I am worried or nervous about something, that urgency feeling comes, and I tend to go more times. For some reason throughout active c-diff, as well as recovery, my mornings always seemed to be the hardest. In the beginning of my recovery, I suffered with nausea with 1-4 BM's with urgency to go. Once the BM's were done, the rest of the day went fine. I actually felt normal throughout the day, but I would dread the mornings. This did improve with time. I also tend to have a nervous stomach in the morning normally, so maybe that adds to the IBS issues.

I think going back to work will be a good thing for you. You will get back into the swing of things. I can't lie and say that I wouldn't have anxiety the first day going back, but once you are there and busy, and not thinking about all of this stuff, you will be fine. I get anxiety about going back to work after just a vacation. :-) Work is the best thing to keep your mind occupied though. You sound like you are doing very well in recovery.

-Lisa

[Dobies#1]

Nikki, it sounds like a normal recovery to me as well. It took almost a year for me to not have three BM's a day. If I have an IBS flare now I'll still go a few times a day sometimes. As long as it doesn't increase to several watery BM's a day and you feel ok, I wouldn't worry about it. Regarding work, I understand you being nervous about being on a long commute on a bus, but you'll just need to try and relax. Maybe you should eat bland at first to try to avoid an upset stomach. Lots of deep breaths and perhaps a dose of Pepto Bismol in the morning for a few days before you leave. I'd check with a doctor about that if you choose to do it. I'd think it would be safe but it wouldn't hurt to ask. Hang in there and just realize that recovery isn't as quick as we want it to be, BUT you are getting there my dear! XOXO!!!
Edit to add: I just pooped for the second time this morning, if that makes you feel any better. We have been out of town so I'm eating way too much junk. I knew better because sometimes it'll affect my IBS immediately and sometimes it is later before feeling the effects. It's normal consistency so far but quiet a bit of poop. LOL! This is the TMI board, right?!! Remember stress cause your stomach to contract which can cause an IBS flare too. That may be part of my issue this morning. I have an appointment Wednesday morning with a gyno/pelvic pain specialist for some pain and burning urination issues. The closer it gets to Wednesday the more nervous I'm getting. Ugh! I'll check the boards later this evening.

[NikaNik]

Thanks, Dobies and Lisa! I really appreciate the tips and encouragement. I would say usually I don't go during the afternoon/night but sometimes I do (like today). Hoping that's normal too.

When I'm out and about I try to distract myself and if I have a thought like, "what if I start having uncontrollable D" I say, "So what." Sounds silly, but it takes the panic away. Like so what, then I would clean myself up and deal or someone would take me to the hospital but the chances are since that never happened before, it won't happen at all. Our photography business has been easier for me to work through since I'm with my husband, but I think going back to my day job will be good, too. I just have to stay hopeful and calm.

I've been seeing a few people who got Crohn's or UC after c diff (I hate when I Google - my hubby says I should be banned from the internet lol). That spirals my anxiety since my father has Crohn's and it breaks my heart what he deals with (he has a more mild case, thank God, but stays close to a bathroom and is home most of the time). Both of my jobs depend on me to be healthy, active and most importantly I LOVE working. I'm SO thankful to be feeling pretty good but I just want to eat whatever I want and not give it or my BMs a second thought. I hope that's possible someday.

Dobies - I will pray everything goes great with your gyno/pelvic pain specialist. Hugs!

[NanciT]

I agree with everyone here Nikki, it sounds like a normal recovery. The more time that passes, I think you will continue to improve and feel better. I think it was 3 months when I really saw my energy coming back. The fear is a battle that time will help with, many struggle with the fear including myself!!!
Take care and be well!!

[Dobies#1]

Thanks for the prayers Nikki! It means a lot!
Also, forgot to tell you that my doctor told me that IBS can cause mucus, and it can also just mean there's some slight inflammation. He never seems concerned when I mention it and I do have it sometimes. Sometimes it's on the TP, and sometimes it's just in/on my poop or in the bowl. I also wouldn't worry so much about the time of day you go, such as afternoon or evening. Remember my BM's were sporadic every day for a year after C Diff. I know I'm not the only one who experienced that. I don't know much about C Diff causing Crohn's or UC so I can't offer much help/advice there. Sorry. Maybe someone else will have some more info about those two things. I'd be interested in that as well. You should eventually be able to eat some of the things you used to. Sometimes I say to heck with it and I'll go to Taco Bell or some other fast food place. Sometimes it bothers me and sometimes it doesn't. Also there are certain spices and preservatives that are put in foods that can cause a different smell when you poop. There's a Mexican food place we eat at sometimes and it always makes me think I have the C Diff smell for a couple of days after. So it must be something they put in their food. We ate there last night and this morning I told my husband and he said his smelled weird too sometimes after eating there. He has IBS too and he tells me to stop analyzing every bowel movement! But as you know it's so hard to do after having C Diff. My stomach has felt off all day today. A couple of times I thought I was going to have to use the bathroom again but it was just gas. I took some Gas X and it seemed to help. Anyway, keep your chin up and thanks again for the prayers. I'll be praying for you as well!

[teresajo103]

Nik....I think you are doing okay. I know the fear you have. Thing is, the longer it is past your meds....the less you will be scared. Bea is right soon you will get more energy and you will be thinking about cdiff less and less. You aren't sick....so I think you are getting better. Stop panicking....tomorrow is 14 weeks for me.....I have just now started to feel human again. It's okay to be cautious.....but your recovery sounds pretty good. Just remember that before cdiff....there was no reason to be a potty inspector......try not to be one now :)

[roy]

If you want to feel good
1 get a sharp stick.
2 poke those solid turds with it.
3 repeat 3 times saying "got you you Ba*****ds".

Now smile and be happy your getting well:-)))

If you want to feel even better substitute stick with husbands toothbrush.

[NikaNik]

Thank you all again! Work was great yesterday. Still nervous about getting Crohns or debilitating IBS from this and wish I could shut off my brain. : / Roy - you crack me up! Thank you haha.

[Bobbie]

NikaNik, I don't know how we can possibly reassure you that your recovery is going well.

Stop with the "what ifs" You are back at work at both of your jobs and you have a supportive husband. You also are on another site for c diff and receive support there. Giod idea, by the way, We have so many horribly ill posters, your situation sounds like a "walk in the park."

You will be fine. Remember, the only one who can really help you is you.

I love Roy's advice, if you can laugh at it, you will be OK. Remember there is a limit on the number of "me" posts when you are a regular poster. See the posting rules in the first forum.

Post a sign on your make up mirror that says, "I am well now, I will be well tomorrow. And the next day. I have done all I can't toward my recovery. Waiting is hard, but so is much of life." You will continue to have bad days for awhile. They are part of a typical recovery.

[Dobies#1]

Nika, I'm so glad you had a good day at work yesterday!! Keep on keeping on. You'll be fine!

[NikaNik]

Bobbie - love the message idea. Thank you. Rules said not more than once a day about yourself which is why I waited to respond last time. I support others here and have PMed to see how they are. Agreed - a sense of humor helps!

Little history on part of my anxiety - Last year I lost half the blood in my body (hemoglobin 6.4 and could barely walk) due to a large uterine fibroid tumor that caused me to flood my clothes with blood regularly in public/at work. I had three surgeries in five months to remove it (lost too much blood during the second surgery so they had to stop and hold the tumor in place with a balloon, then after the third surgery I was given two catheters till the next day). I got c diff not long after I got well which spiraled my anxiety.

I'm thankful for the support I've gotten here! My case is absolutely a walk in the park compared to a lot. Things can always be much worse, I know this. I will limit my posting but will encourage others when I can.

Dobies - thanks so much! You are such a light! Hope your appointment went well.

Nikki