Vent - I'll keep it short

[okaylo]

Waiting on my test for cdiff to come back. Suffered for a long time. Have to eat to stay alive but when I eat I am always afraid of having an accident at work or even at home. I am so darn tired of my backside always feeling hot and not knowing what's going to happen. I feel like I'm checking a babies diaper with having to check myself all the time. Just awful. All I ate today was some grilled chicken and plain white rice. Not much excitement but even this seems to be a problem. When you're in a restaurant and you're just standing there not moving praying the feeling passes, you know you've hit a low. The worry is just all too much. Yes, I have a therapist/professional help and no, I don't need a lecture. Just a little venting. Does anyone else experience this?

[beth22]

I think we have all experienced this. SIBO causes these symptoms too and I know you said you had it. So do I and when it was at its worst, it was worse than c difficile. Hang in there and see what your test shows if anything.

[roy]

What you eat normally takes 24 to 48 hours to come out.
With fast transit it might be only 4 to 6 hours but nothing will come out again as soon as you eat it.
If your sick you avoid restaurants!
Why put yourself into a stressful situation?
Your young and want to party but that has to go on hold for a while.

[okaylo]

Beth, yes, I believe that is coming in to play as well. Waiting for the results. The waiting game is the worst.

Roy, I agree about the transit time. And even if I ate something and had the urge, it wouldn't be that food I just ate that was coming out. It would be food from the day before or even before that. I think this is a combo of IBS, SIBO, meds, and past cdiff. I just went to the restaurant to get some fresh air and out of the office. Eating at your desk and dealing with this every day at 26 gets depressing. I don't make it a habit of going out to eat and usually go to work and back home again with no stops in between every day. I am young but I do not want to party. I don't drink alcohol, do recreational drugs, and I've always been an old soul. My Friday nights are movies at home and relaxing. Never been one for bars, parties, going out, etc. My brothers tell me I'm boring and a homebody, but I was like this even before cdiff. Just content with not being a party animal. I've put life on hold for a long time already and have cancelled many events because of this. I usually do not make commitments out of fear that I will have to cancel them and have explained to people that I never know how a day is going to go and live my life an hour at a time right now. I feel guilty if I have a moment of happiness or laugh, if I don't clean for a day or two, if I take a breath and try to relax. The fear is a constant and I'm afraid if I let up or let my guard down I'll regret it. And the "what ifs" are always there. Like the anti fungal cream I had to use for a yeast infection... My GI and the gyno's nurse practioner both told me it wasn't absorbed systemically and effects fungus not bacteria but when you've been on the journey this long, anything seems possible.

[georgina]

Crossing fingers that your test comes back negative!

[okaylo]

Test was negative! I'm having a hard time accepting it and trying to let my guard down. Was crying when he told me the results, so overwhelming. Reminders of being sick and hypothetical situations of reinfecting myself have set in. I still have the urge to clean but I'm fighting it. Doctor said I'm dealing with severe IBS, Small intestinal bacterial overgrowth, and malabsorption. Recommended a new LOW FODMAP nutritional drink to give my digestion a break and starve the bacterial overgrowth. Not sure how I'll react to it as it has milk protein in it. Guess I won't know if I don't try. Anyone heard of ProNourish by Nestle? Trying to take a deep breath and keep pushing forward but still in a lot of pain with the irritated gut. Patience and time is what I have to tell myself.

[beth22]

I went through the same thing after my first FMT colonoscopy. My SIBO test was off the charts and it was most likely the primary reason. I couldn't eat any dairy - not even butter, no vegetables at all or it would just go right through me. I wound up having to take Xifaxan (no I didn't relapse with c diff) and then things got better. Have you tried EnteraGam? It helps some people. What about Questran? It helps to bind up the toxins. SIBO gives off toxins too.

[okaylo]

I took Xifaxan before my FMTs but it didn't get rid of the SIBO. I've tried Questran before and it has helped I'm just leery of all things medication at this point. I'm going to try the drink soon and see what happens first. Thanks for the info Beth.

[amyc]

You admit questran helps you. It's just a resin that absorbs toxins and bile acids. I take something similar every day because it helps me feel better. You need to seek wellness, but you are intentionally choosing illness. Choosing illness is crazy. You need to seek psychiatric care, get help to find meds that will solve the crazy thing.

[georgina]

Glad you tested negative Okaylo. Ask the doctor about something to help with you IBS. If Questran is not an option for you maybe you can try Pepto or antispasmodics etc.

[Bobbie]

During my son's second bout of c diff, his ped GI treated him with questran only. It has only about a 10 percent cure rate but itself but it worked! Give it a try.

Counseling might be helpful. Many on the site have used it because c diff is a particularly upsettting disease.

You will recover with time, patience, and trial and error.

[okaylo]

Amy, I'm really trying to be positive. I'm just afraid and I know it's going to take time for the fears to go away. I've been dealing with this for almost 2 years and I realize it's not going to happen overnight. I will talk to my doctor about Questran as an option. I have a call scheduled with my therapist today to discuss things and work through this some more.

Georgina, thank you for your suggestions.

Bobbie, I'm glad it worked well for your son. I'm in therapy right now and will continue to do so. Thanks for the encouragement.

[Ril]

I'm not going to repeat what the others have said because we've gone around and around about this over and over and "the ball is in your court" in terms of your mental state and working with your therapist.

Physically I have had the same problems off and on for almost 4 years however the difference is I was determined to find a remedy and get my life back. My GI dr worked with me and we tried questran for several months, raising the dosage and frequency until we found one that worked and stabilized me for a while. After being ok for about a year things got bad again and I started on Enteragam and again, had to double the usual dose and wait a long time for it to work but eventually it did. After 9 months I went off that to try xifaxan, which worked well for 6-7 months and now is waning because of other issues, but I am still living a great active life and use Imodium when necessary so I can keep moving.

There are all these meds you can discuss with your dr but you have to choose to recover and put your fears on the back burner. Nobody can do that for you, only encourage you. We have shared our experiences and given you suggestions. I do understand about anxiety disorders however I cannot (and don't need to) give you medical advice here - but I am sure your therapist has told you about powerless feelings feeding anxiety and how your emotional and physical condition will both be better when you start to gain some control over your feelings. Some of that is just common sense.

Rita

[okaylo]

Rita, I appreciate everything you have said. And I do understand what you're trying to tell me. I know often times my worries are just thoughts and nothing more but sometimes they become such a vivid reality. My current worry is a plunger I used back when I was sick. I cleaned it multiple times but had to use it the other day and am afraid of any old spores that may have been on the handle. Everyone who uses my bathroom has used the plunger but I just have anxiety about it. I'm afraid that after I used it the other day and went to wash my hands that I might have gotten spores on the hand soap bottle. Then as I was washing my hands, a drop of soap got on the sink handle and I have been fighting the urge to go get the bleach and douse the entire bathroom for the last 5 days. Even right now I'm telling myself to calm down and am fighting the urge. I use my elbows to turn the sink on and off so I'm afraid if there was anything on my elbow it's now on the shirts I wore and on the blankets I slept with. I know everyone has given suggestions on ways to combat the anxiety and I know you have as well. I want to beat this mental battle once and for all. I tried the drink my doctor suggested even though I'm terrified of it's effects and I'm really fighting the obsessive cleaning urge so that has to count for something in small steps. I'm sure my fears aren't justified to most but they're real in my mind. I apologize if my posts have been frustrating but I've dealt with this for almost 2 years and I think it's going to take some time to heal and mentally re-adjust. Thank you for being a voice of reason.

[beth22]

If you know that you are going to react that way, then just make things easier on yourself. Throw out the old plunger, the soap bottle and whatever else you think is contaminated. Do one more cleanup of the bathroom. Use bleach on the toilet, bleach wipes on the handles, door knobs or whatever else you want and then give it a rest. Buy a new soap bottle and plunger and just picture your bathroom as spore free. No point in wondering every time you touch something if it is still contaminated. Whatever you pay for a new soap bottle or plunger will be well worth the cost. Then try not to obsess. Work on it with your therapist and I'm sure that in time it will get better. Try to stay active. I do much better with worries when I work or keep myself occupied. If your mind is engaged in other thoughts, those fears will have a harder time to plague you.