When will this end

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jds0870
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When will this end

Postby jds0870 » Wed May 18, 2016 11:28 pm

Hello I hope and pray everyone is feeling better. I got c diff in Feb of 2015. Went through 2 rounds of Flagyl and two rounds of Vanco. Finally December 16 and 23rd I went through the trail Rebiotix. I was in the last phase of the trial so I got two real enema's...no placebo. About a month after my last FMT I got a severe uti that wouldn't go away. I tried pushing ware D mannose and pure cranberry juice. Finally when I felt I couldn't even walk from the pain I went to get antibiotics. I took Macrobid as I found here on the boards it's a very low offender. Here I am in May and starting this lady Sunday I've had D. 1-3 times a day. I feel like I'm going to scream. I don't to deal with this anymore...why won't it just go away. I know a lot of people get ibs pi. Which I'm sure I have a form of. I'm trying not to panic but it's scaring me. I don't want to do this anymore. I just want to feel better. I don't know what I'm going to do if I have to test again and it's positive. I can't keep taking time off work and I can't quit because I'm a single mom with two little girls. My sisters wedding is the 31st and it's about 3 hours away. I pray this is just ibs and it stops in a couple days. I'm so exhausted. Not only that but the longer I have the more of a chance my daughters have of catching it. I don't even want to go to the bathroom cause I'm scared d is going to come more. I'm also sick to my stomach it's crampy...but I think ibs can cause that too from what I've read. Has anyone had a bout of d that lasted more than 4 days but wasn't c diff? I guess I'm just trying to keep calm. I pray for the day this is over. I don't know what I'm gonna do if it doesn't go away and I have to test and it's positive. I don't know if I can fight this anymore. And I can't afford to go to the amazing Doctor in Florida that I've read about. I've really been researching the home enema's. It just scares me that it will kill me or take my colon I don't want either of those. I've had this off and on for a year and a half almost. I'm scared it's causing irreversible damage. Thanks for listening I'm just scared.

georgina
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Re: When will this end

Postby georgina » Thu May 19, 2016 7:19 am

Hi Jerri
I am so sorry you are still suffering although I don't think that it can be due to CDiff. I know you have thyroid issues, have you considered checking that with your endo doc , or taking some anxiety treatment. Antianxiety meds helped me significantly , it slowed down the gut and helped with cramps also .

NanciT
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Re: When will this end

Postby NanciT » Thu May 19, 2016 10:22 am

Hi JDS

I am sorry you are going through this and YES, I have had D for up to 4 days and tested negative. The Post IBS I had was terrible and went on for months. It was an on and off thing. I kept getting UTI's ( 3 of them!) post Vancomycin. SO I was treated 3 times with antibiotics and did get through it with CDIFF NOT returning.

I have continued to have bladder symptoms with NO UTI now, doing Physical therapy. The IBS is calming down.
I have used Levsin on and off which is an antispasmodic, check with your GI, it might help.

It's hard not to let the fear take over but know things can be "all over the place" for months.....watch your diet, it plays a big role in this and go slow adding foods. For me a new food can throw things off for several days.
Feel better soon!
NanciT

amyc
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Re: When will this end

Postby amyc » Thu May 19, 2016 3:32 pm

Part of post-infectious IBS for many of us involves D and bladder issues. I also recommend anti-anxiety medication like Xanax. It helps with the mind and is excellent at calming the gut too. Look up interstitial cystitis and mast cells. When I feel bladder irritation coming on I pop an Allegra or Claritin and it goes away. I finally found a mast cell disorder specialist who diagnosed me, but very few doctors know about it even though they now say up to 10% of people suffer some kind of mast cell issue and spen years being passed around by multiple doctors who never find anything wrong with them. A mast cell doctor at University of MN med school just published a book called Never Bet Against Occam, and it's awesome. If you like doctor shows like House, MD you will enjoy the book--Dr. Afrin is the real deal.

Also, don't sit and agonize over asking for a C diff test. It will probably be negative and that will help the anxiety as well. Best of luck to you :) hang in there!

jds0870
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Joined: Tue May 12, 2015 8:43 pm

Re: When will this end

Postby jds0870 » Thu May 19, 2016 8:08 pm

Thank you For the kind words, they really help. I did make an appointment for my thyroid. I haves graves and was off my thyroid medications through c diff.
Thank you Nanci I do take Bentyl the generic and it does help with my stomach I've taken it off and on this whole time. What was the longest bout of ibs you had. I know everyone's different but it's helpful to know its most likely fingers crossed ibs.
Thank you Amy you are right about torturing myself over testing. I'm going to try and tough it out until Monday and I get worse I'll go to er and follow up with Doctor. Thank you the support ladies it means a lot

NanciT
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Re: When will this end

Postby NanciT » Thu May 19, 2016 8:47 pm

jds
I am still dealing with the IBS, some days I take no medication, other days I find 1 levsin helps enough. It is not as severe as it was after I finished a 3 month Dificid taper( completed 11/14) It is mild now and there are days I have no symptoms now. I still watch what I am eating, it tends to have an impact on how I feel.
NanciT

Lisa33
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Re: When will this end

Postby Lisa33 » Thu May 19, 2016 8:48 pm

So sorry you aren't feel well. I just wanted to add that if your thyroid is hyperactive from the Graves Disease and from being off your meds, that could be causing frequent D as well. I have Graves that has since been treated with radioactive iodine treatment and now under control with meds. But, when it was hyperactive and out of control, I did have loose stools to D. I believe your metabolism speeds up, along with everything else (heart rate, etc.)

Hope you feel better soon,
Lisa

georgina
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Re: When will this end

Postby georgina » Fri May 20, 2016 6:04 am

Agree with Lisa , get your thyroid check. I work in ambulatory now , in endocrinology and we have many patients with Basedow that have fast transit and gut spasm due to thyroid hyperactivity.

jds0870
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Joined: Tue May 12, 2015 8:43 pm

Re: When will this end

Postby jds0870 » Sun May 22, 2016 4:14 pm

Day 7 still d and tons of mucous. I'm gonna have to test. I don't want to but I know it's positive. I don't know what to do. I'm never gonna get rid of this. I seriously am crying as I write this. I feel like I am going to die from this. If the enema's of stool didn't work. I don't know what will. I'm in a dark place of despair I don't think I can keep Going through this. It's like the strain I have is resistant to all forms of treatment. I bet it was because I had to take Macrobid a month after I had the enema's. I know this is a relapse I just don't know what I'm going to do. I'm so scared I'm gonna lose my colon or die from this. I'm losing faith and I'm ashamed to say it but I am.

Lisa33
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Re: When will this end

Postby Lisa33 » Sun May 22, 2016 4:26 pm

I know how discouraging this all is, but you must keep the faith and stay positive. You will get rid of this. I wish that it wasn't so hard for so many to be cured. Maybe talk to your doctor about doing the FMT from both bottom up and top down. Look through Skizami's posts, as he was one that had a very hard time getting rid of c-diff as well, and this way worked for him. He is still having a rollercoaster recovery, but he is c-diff free. I believe there are others that this way worked as well. It's something to look into. I wish that I could say something to make all of your fears and anguish go away. But, even the most resistant strains are curable. Unfortunately for some, it just takes too much time. I know you have to test at this point. I am still praying for a negative test for you.

Stay strong.
Lisa

Ril
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Re: When will this end

Postby Ril » Sun May 22, 2016 6:53 pm

You should do the test because at this point, the anxiety is just so overwhelming that the reality of the result can't be any worse than what you are thinking. If you are positive, and that is still far from certain, you can talk to your dr about Lisa's suggestion or hear any ideas he might have. You will not die from this. You will get better. It stinks that it is taking so long.

I had horrible PI IBS and the IBS now, 3 1/2 yrs later, has been worse off than most times in the past. It can sometimes feel like c diff. If you do not have c diff, you can ask the dr about a medical food, Enteragam that is used for IBS-D and is sometimes used after c diff as well. It is helping me a lot. I also found that levsin, or the longer acting levbid, worked better for me than bentyl. These are just other things you can discuss with your dr to ask about for more relief.

You are not the only person who has had difficulty and felt hopeless. Remember that anxiety fuels IBS. I totally agree with Georgina that you should think about asking your dr for something mild to help with your anxiety and also try some deep breathing, or other things that distract and relax you.
Thinking of you and wishing you the best.
Rita


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