Letting frustration out...

[sevla]

I do not wont to be an "over poaster" and be annoying by showing my fears over and over again, but at the same time I need to let the frustration out.

Day 3 of looser stools/D. Today I already went 3 times (2 semi formed loose stools and 3rd what I would call mushy/D). It's not even 9am.. I want to test again as this is driving me crazy. It has now been a week since FMT, and I know it can go wild for a couple of weeks to a month, but boy is this so nerve-wracking. Yet again I am opting out of a family trip on labour day weekend because I am too nervous to sit in a car for hours and go somewhere where I cannot control the time I eat, what I eat, when to take my kefir and supplements, etc. I would be so nervous all the time and not fun to be around. I lost count how many weekends and trips cdiff has already ruined for me.

Yesterday my GI called me back and said not to worry about colour of stools (very pale), and that if I want I can test for cdiff again.. He also said that if I need a second fmt we would use a different donor. I ran out of options and hope he would work wit openbiome. I did ask him if he was concerned about thr amount of sample I brought to the fmt as it did not seem to be a lot, but he said he worried more about the stools being a 2 in the bristom scale. He prefers number 4 stools.

Oh well, I will try to test before the weekend so that I get results next Monday.. I am so desperate for a negative test....

[Lisa33]

I am so sorry Sevla that you are not seeing much improvement yet. There are several on this site who had the same issues after the FMT, but winded up being cured for c-diff. Try to stay hopeful as hard as it is. I also know how frustrating it is to be missing out on life. Are you sure you don't want to be away with your family for the weekend? Sometimes a change in scenery and a break from what has become the new norm of the everyday regimen of battling c-diff can be the best remedy for recovering. I can understand if the D is so frequent that you can have an accident, but if it isn't, you could always stop at a rest stop to go. You could always go to a supermarket at your destination and buy foods that you are comfortable with. I just don't think you should let c-diff ruin another weekend, especially if you are feeling ok, except for the several BM's. I totally believe in the brain-gut connection as well. Sitting home thinking about pooping, will make you poop. I believe that sitting home and thinking about c-diff has an effect on your symptoms. That is just my opinion and I know that it's easier to just not go. But you can't continue to worry about the "what if something happens" otherwise you will continue to deprive yourself of life. I think if you are feeling good overall, you should go.

I will pray for a negative test for you. Hugs to you.
Lisa

[sevla]

Thanks so much, Lisa! I know what you mean about not letting fear and cdiff rule our lives. I am not there yet, even if I know I have to reach that stage soon, but I can't seem to get to the recovery side and I need that in order to gathering strength and just tell cdiff to f*** off.

I had 7 BM today..half solid, half loose. The last one loose and with that familiar colour and smell. I am beyond beyond frustrated. I am turning 37 years old this month, and I certainly never envisioned to be in such a funk by this time. Who knew 4 months ago that this will be dragging for I don't now how long. I know others have been sick for longer, but the fact that 50 days of Dificid and one FMT might have not done it for me is VERY depressing..and I feel hopeless - what will help me!?

To make things worse I am in that time of the month where we women get super emotional - so I apologize for sounding so tragic.

Doing stool test tomorrow - because of the holiday I will only get results on Tuesday - lovely looooong labour day weekend waiting for the big news.

I hope everyone has a pain free, D free weekend!

[beth22]

Sevla - Maybe it is the supplements or the kefir. There are many who can't take kefir and a lot of supplements, including probiotics don't agree with me. I also got a lot of food intolerances after my FMT and being off meds that I never had before. The prep for the FMT does not help either. Why don't you try eating really bland foods for a couple of days and maybe hold the kefir and see if it makes any difference. Unless, of course, your doctor said to take the kefir, in which case you need to follow his instructions.

[zinnia1]

just seconding beth's thoughts and totally commiserating w/how you feel about missing things. I am about to to a four day road trip to my mother-in-law's memorial service, sleep on blow-ups and share bathrooms w/tons of family, eat at family style burger joints and even be on a ferry boat. My stomach rolls just to think of it! But this is reminding me to pack the pepto and gas-ex and bring my own bland PB and J. I can't take kefir and so many probiotics- frustrating as I know they are helpful to many, but they just unsettle my gut too much and I am in bathroom all day. Let us know how you do over the weekend.

[Lisa33]

Just an FYI Sevla, for some reason when it's that time of the month for me, I tend to have to go to the bathroom more often than usual. I am not sure why, but it's usually the case. That may be adding to your issues right now. I am praying so hard for you that the test is negative.

Lisa

[sevla]

Thank you all so much! I dropped off the sample this morning. Now the crazy wait until Tuesday. I don't know how I would react to a positive test - I would have to deal, I guess..but not before breaking down..

I am not taking a lot of supplements. Just vitamin D drops, L Glutamine and Aloe (2oz a day). I will skip Aloe and the avocado today and see what happens..

Lisa, it also happens to me that I have higher frequency when that the monthly cycle hits..so I really hope some of it is related to it..

I will try relax over the weekend and not think about stools shapes and colours and frequency all the time.
I hope everyone has a wonderful weekend. Zinnia - I hope you can have fun during the weekend as well - so hard to be in those settings where people around us eat and drink all kinds of thing and we don't feel like we have "control" over the situation.

[kwiatek7]

Hi Sevla. I hope you test results come out negative and I hope what your experiencing is just nerves. I was diagnosed with C- Diff over a year ago and even though I have been tested negative afterwards I notice that I still struggle with a lot and the fear makes me go nuts. When I get nervous, anxious, upset, my stomach goes in a rant and I go to the bathroom so much and can’t eat; it’s a constant battle but we can’t give up! Anyone that had/has C-Diff is one of the strongest people I know because it’s surely not easy and it’s not like it just vanishes like a cold/flu does.

I am in the same boat as you and Lisa, when the time of the month comes around I feel so unwell and the bathroom is my savior. I never had these issues before I got C-Diff. So that contributes to your BM’s.

Please just hang in there and try to relax your mind. It’s easier said than done but that’s all we can do.
I noticed that it’s better to take a rest from supplements when we are frustrated/ upset and all as that puts too much pressure on our bodies to process it; but a bland diet it good.

Have a nice Labor Day weekend and let us know the results.
Agnes

[seekingcure]

Everyone has given you good advice. I just want to throw my two cents worth in. I tried Aloe Vera juice several years ago (prior to c-diff) and it gave me horrible diarrhea. Hopefully leaving that off will make things better. Also, regarding the light color of stools: my stools have been lighter ever since I had c-diff the first time and just now, 3 months out from FMT, I am beginning to notice a little darkening. Hopefully this is from the new bacteria taking hold. It seems to take awhile after FMT. Praying things will start to turn around for you soon and you get that negative on Tuesday.

[sevla]

Thanks, Agnes and Bea. Hearing from others and their experiences helps a lot!
I went less times today - 3 so far. Not formed, not D per se, so I will just try to relax and not over worry during the weekend. It will not change the lab result..

Hope you all have a wonderful weekend.

[beth22]

Sevla - Aloe vera is used as a colon cleanse. It has a laxative effect. It may be what is causing you the looser stools. I would not take any for a few days and see if it helps.

[JeannieR]

Praying for you girl! I wanted to add also that even before cdiff, I had an aloe drink and it made my stools loose. That could be a reason why you have looser stools.
And, I completely understand your frustration! I am dealing with cdiff too...I had a fecal enema a few days ago. It just sucks that there is a waiting game. Hang in there girl, you will beat this!

[sevla]

Thanks Jennie and Bea.
Jennie, I so hope that your enema works! It works for most people!

In my case I seriously don't know what to think. I had already two BM things morning - that familiar orange colour and the smell are so obvious. I am sure it's back.. I just don't get it. Flagyl, Vanco, two rounds of Dificid (one very long course) and an FMT - why can't I get rid of it!? Before this whole thing started I never got sick (only took antibiotics for staph infections). I was a healthy 36 years old who was in an airplane all the time traveling all over the place for work. Now I can't get rid of this nasty bug and it has inpacted and changed my professional career completely. It has also impacted my personal life...

Nobody will understand why the FMT did not work and everyone will wonder when will I get healthy. I feel hopeless and lost.

[JeannieR]

Sevla, I know it's hard and it's scary and it's frustrating. I don't have any experience with fmt's but from what I have read it sounds like you could still be ok. I know with any treatment for cdiff recovery is long and many think they are relapsing and they are not. I'm in the same boat you are too... I just pooped again for the second time today, smells pretty cdiffy and if was softer than my first one this morning and it was more yellow. It instantly puts me in a crappy mood.
I am 36 also and was healthy, never usually got a cold even. Cdiff sucks more than anything and I hate it more than I have hated anything in my life.
Try and hang in there. We will both get rid of this. One way or another.

[Bobbie]

Agree heartily. C diff sucks - big time. Had it three times - first time for four years - in 22 years and after every treatment had iBS for months - including after FMT.

All we an do is live "a day at a time."