Life is a rollercoaster

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okaylo
Regular Contributor
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Joined: Thu Jun 16, 2016 6:32 pm

Life is a rollercoaster

Postby okaylo » Wed Nov 09, 2016 2:19 pm

I had my second FMT a little over a month ago. Life has been a rollercoaster of ups and downs since then and is so hard to deal with when each day is unpredictable. The first 2 weeks post FMT were complete hell. I just kept praying for a day where my stool would be formed and then that day finally came. I was doing well for about 2 weeks after that and was having formed stools, not perfect but so much better than before. I still didn't feel great but the anxiety of going to the bathroom was reduced as I was no longer having loose stools/diarrhea. The urge to obsessively clean was also reduced and I was no longer bleaching every square inch of the bathroom (sink, counter, faucet, faucet handles, toilet top to bottom, floor, you name it, I cleaned it). I began to feel should I say almost "free"? I felt like I could breathe again. Things weren't perfect but I could feel them heading in the right direction.

In addition to CDIFF, I suffer from IBS, SIBO, and a multitude of other GI issues that I have endured for close to 4 years so a normal day in the bathroom is like Christmas morning for me. Anyways, the past week or so, I have felt a whole new kind of sick. Burning in upper abdomen, a general ill feeling, nervousness, fatigue, headaches, nausea before and after eating and so on. I fear the possibility of an ulcer so I spoke with my doctor about it and he said it could be gastritis or GERD acting up which showed up on my past endoscopes. He suggested an antacid for the upper burning, Zofran for the nausea, or an antispasm med such a Bentyl for the pain all of which I have tried in the past but I am so leery of any medications at this point. (I know that my gut needs time to heal and medications are often just a band aid on a tumor when the body isn't repaired). In addition, my doctor sent me for blood work to have my liver/pancreas checked and to have a full blood panel done. I also have an abdominal ultrasound scheduled for next week to check all my major organs and make sure everything is okay.

Anyways, I took antacids for months because of GERD and Barrett's Esophagus (a precursor to esophageal cancer if not monitored closely) and genuinely believe that's what led the development of SIBO due to not enough stomach acid. I then treated the SIBO multiple times and ended up with CDIFF. Each issue has snowballed into another and I am not willing to touch any medication unnecessarily anymore. It's so frustrating when you want to fix a problem but it will undoubtedly make another issue worse or put me at risk for an additional problem. I was even upset when I had to use a cream for a recent yeast infection and panicked that it could've affected my FMT.

This morning was the worst of days in a while. Urgent loose, floating stool and a lot of stomach pain. My bowel movements are so up and down that I chalk it up to IBS and the path to recovery. I am trying so hard to be patient as I know it takes months or 1+ years for the gut flora to normalize after an FMT and in addition, IBS is a malabsorption problem in itself often leading to food passing through too quickly. Back to this morning: The urge to obsessively clean came creeping up on me after a piece of toilet paper and a small fragment of stool got on the toilet seat. I bleached the sink, counter, faucet, faucet handles, and toilet top to bottom. I don't even touch the faucet handles (I still use my elbows and I flush the toilet with my knee even after all of this time and yet I still felt the need to clean them). Now I'm afraid that the bleach I used to clean the faucet could've somehow gotten in my mouth when I went to brush my teeth 30 minutes after cleaning. I am such a nervous Nelly and think that any situation or possibility is going to put my FMT in jeopardy. I wiped the faucet down with water and a paper towel after I cleaned it with bleach and everything was dry so it's ridiculous to think that bleach got into my mouth. I thought I was done with this crippling anxiety but just when I think I am, it comes right back. I have fought so hard and I can't believe what one single day can make me feel like. I have been to counseling but the therapist simply didn't understand the severity of all of this. She was nice but just not completely receptive of what I had been through.

I'm looking for some reassurance here from anyone who has experienced anything like what I have been through. I'm still so panicked and upset and people that have not gone through this have no idea what it's like. I'm 26 and engaged and just found a guest house to rent. While this should be one of the most exciting times of my life, I am bogged down with stomach issues and barely getting by every day. I'm still afraid about the bleach on the faucet from today. I don't even know why as I've bleached the faucet many times before and never worried about anything getting in my mouth. There is just so much fear and it makes you question everything. Constant hand washing has kicked back in for me too. I even wash my hands after I put my shoes on. I think it's time for me to go back to counseling. I have sought the help of nutritionists and have tried to improve in any way I can but nothing has worked. I do not want to go on antidepressants or become reliant on medications. I just want to get strong and get better. I feel so overwhelmed because I have so many issues and it's such a vicious cycle. To anyone who takes the time to read this long post: I appreciate it.

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Life is a rollercoaster

Postby NanciT » Wed Nov 09, 2016 8:21 pm

Everyone has a different story in recovery, that also goes for complications due to the medications taken. Some recover quickly, others it takes time. I developed a hernia( had vomiting every time I was positive) with CDIFF, along with that came the Gerd etc. I take aciphex although it is on the "do not take list" and I hope to come off it soon. I am still not at the point where I can do that yet, still dealing with IBS.

This all takes time. The cleaning and worrying about relapse seems to also affect everyone differently.
We have had many on this site that have started counseling which I think is an excellent idea. From my experience, its very difficult for anyone to really understand this illness and everything that goes along with it.
With the symptoms you are having, it is always good to get checked out just like you are doing, have the lab and other tests ordered to rule anything else out. Once you have done that, if nothing comes it, it may just be time.
I find that the most difficult, we all want our lives back, but it might just take time.
I hope all your tests turn out well and you are feeling better soon!
NanciT

okaylo
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Posts: 147
Joined: Thu Jun 16, 2016 6:32 pm

Re: Life is a rollercoaster

Postby okaylo » Wed Nov 09, 2016 8:57 pm

NanciT, I really appreciate your response. You are such a kind and caring individual and whenever I hear from you, it always brings happy tears to my face as you give realistic reminders and bring me back down to earth. I know a lot of times my worries and anxiety may seem irrational to most but anyone who has been through this to any degree has a different level of understanding. It is amazing how the worry takes control and can toy with your emotions and how it can happen at the drop of a hat. Something like cleaning and then thinking of all the little possibilities: ("Did I clean that well enough?" "Could there be something on that?" "I need to wash my hands again." "I need to take another shower." The questions and worries are often endless. I was honestly entertaining the thought that bleach I cleaned the faucet with could've gotten into my system when I brushed my teeth and killed off my gut bacteria. But for me the thought seemed so real. If I tell my family about worries like this, my Mom just tells me I'm being silly and I need to stop this because I'm making myself sicker. (Easier said than done).

I know anxiety and stress magnify my problems and make things 100 times worse and I need to learn how to get that under control. When I wake up, the stress immediately starts as I've been in this same routine for so long and I need to break free of it. I am looking for a new counselor and hope to see one soon. I feel very alone even with people around me and maybe talking to someone who doesn't know me will help. I know my family is tired of me crying and talking about my problems. I used to be such a fun-loving and happy person before all of this. It is often hard to remember the days before this all happened but I want to get back to them so badly.

I thank God for this site and for people like you. I would be lost without it. I appreciate you reaching out. Thank you.

beth22
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Re: Life is a rollercoaster

Postby beth22 » Wed Nov 09, 2016 11:06 pm

Maybe a new counselor could give you a medication to help with your anxiety - something mild. I have pancreatic issues since c difficile and I always know when I get a flare if I have that burning in my stomach. I usually don't get the burning, but it seems to come with the elevated pancreatic enzymes. It is good that you are having it checked out, although for me, there is no treatment really. Sometimes digestive enzymes help - they give you pancreatic enzymes to take. Worth looking into.

okaylo
Regular Contributor
Posts: 147
Joined: Thu Jun 16, 2016 6:32 pm

Re: Life is a rollercoaster

Postby okaylo » Thu Nov 10, 2016 2:33 pm

Thank you for the suggestions Beth. I really don't want to take medication if I don't have to. Hopefully talking to someone will help. I'm looking for a counselor today. Wishing you well.

Ril
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Re: Life is a rollercoaster

Postby Ril » Thu Nov 10, 2016 9:51 pm

Sometimes medication is necessary. If your anxiety is taking over your life, trying to avoid medication that could take the edge off and help you through the roughest time may not be in your best interest. Getting started with a counselor of course will be helpful. There are also several very easy stress reduction exercises you can do on your own. You can find them on line and they may help you.

It is sometimes hard to accept when you are well, especially when you still feel ill in recovery. Most people don't realize that many of us have a long road to feeling good even when c diff is gone. I had severe IBS, nausea, and food intolerances for a very long time.

First order is to get a grip on the anxiety. My suggestion would be to try those exercises in the mornings then throughout the day as needed and to use medication for now until you can get stable.
Good luck
Rita

georgina
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Re: Life is a rollercoaster

Postby georgina » Fri Nov 11, 2016 2:03 am

Agree with Rita and Beth , if anxiety is really high your entire immune system and digestive system suffers so medication can be necessary .


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