VENT

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Zapper
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VENT

Postby Zapper » Mon Aug 14, 2017 8:08 am

Almost 3 months post 2nd FMT. Still dealing with urgency and mucus episodes and unable to find trigger foods. Still very very bland diet. I'm starting to think it's triggered by stress/lack of sleep.
Hit me this morning and woke me up at 4am and I've already gone 5 times within an hour.
I feel so hopeless. I thought the FMT would "cure" me. I know I need to give it time. It's just some days bring me really down I guess.
Thank God for this site... I don't know how I would have made it without all your help and guidance.

NanciT
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Re: VENT

Postby NanciT » Mon Aug 14, 2017 9:40 am

Have you checked in with the GI about some medication? I used Levsin for Post CDIFF IBS. It helped a great deal. Foods can take a long time not to irritate the gut and it can be difficult to know which one's. I go back to BLAND every time I come down with D and stay that way for a least 3 days. I still don't have a "normal" diet but slowly add things.
I think whichever way we get rid of CDIFF, this gut thing can last for anyone. I know often with FMT physicians will treat it like a magic bullet....and often posters are back here with Post IBS. It can just take time. Go slow and easy.

If you are waking up and going 5 times in the AM and that continues more than a day or two, I would call the GI.

Sorry you are going through this, it can be terribly frustrating. I hope things improve for you soon!!

NanciT

MKW
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Re: VENT

Postby MKW » Mon Aug 14, 2017 6:51 pm

Hi, I have had IBS symptoms on and off since my FMT in March. I went to a new GI Doc a few weeks ago and she prescribed me Levsin. It definitely slows/stops all the intestinal spasming. It can be taken as often as every 6 hours, dissolves under the tongue and works quickly. If you haven't tried an antispasmodic drug like this you should. It could really help you.

Zapper
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Re: VENT

Postby Zapper » Tue Aug 15, 2017 9:40 am

I really might need to try that. I would say 2 days out of the 7 in a week I have this issue. Maybe it can help. I'll have to wait until my insurance kicks in (Sept) since I just started a new job.

georgina
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Re: VENT

Postby georgina » Wed Aug 16, 2017 3:26 am

Taking antispasmodics can really help you with pain and urgency ,but if you also have trouble sleeping i personally think that you could really benefit from a good antidepressant . Some antidepressant have very good sedative effect and also help with IBS issues , talk to your doctor about that.

MKW
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Re: VENT

Postby MKW » Wed Aug 16, 2017 9:11 am

Zapper, 26 years ago back when people first started using the term IBS and I was 19 and knew nothing about physiology,I had chronic diarrhea for about a half a year and was prescribed everything... nothing worked. I had every type of diagnostic testing and they found nothing. It was attributed to stress. I ended up clinically depressed since I was basically disabled, and started seeing a psychiatrist. Prozac had just come out so I was put on that and then a variety of benzos. Still nothing helped. Then he decided to try me on an older class of antidepressant called Tofranil-pm, which is immiprimine. No lie, I was cured in a week. Solid regular normal BM's and GI function after months of suffering. Later I was switched to amitryptiline which has similar action. It is something about how norepinephrine effects smooth muscle of the GI tract that helps. If you check into antidepressants and IBS you should be able to find out more about this. That same drug used to be prescribed to children for bed wetting. It does more than effect your mood, it has a smooth muscle effect.

Zapper
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Re: VENT

Postby Zapper » Fri Aug 25, 2017 9:56 am

Thanks guys. No trouble sleeping. Wish I could get more but my 10 month old prevents that! I am really trying my best to keep it all under control until my new insurance kicks in sept. It's an HMO... so I have to start all over with referrals. Ick.

amyc
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Re: VENT

Postby amyc » Fri Aug 25, 2017 9:35 pm

The old tricyclic antidepressants should be cheap, so you could call your GI to see if they would write you a script and just pay for a couple of weeks worth out of pocket.

Zapper
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Re: VENT

Postby Zapper » Tue Sep 05, 2017 10:49 am

So we are a few weeks from the original post and I'm back again to uncontrollable mucus and d. I haven't eaten anything but chicken rice toast and bananas for the past 2 days since there was an upcoming wedding I wanted to be there for yesterday. I barely made it thru the event as I started becoming ill yesterday 1 hour before the ceremony.
I am feeling very defeated. I just don't understand what I am doing wrong.

Ril
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Re: VENT

Postby Ril » Sat Sep 09, 2017 8:34 pm

There are also other medications for IBS such as colestyramine (questran), Enteragam and even xifaxan. If severe IBS continues you can at least ask your GI dr if one of these might be appropriate for you to try. I have taken them all at one time or another after c diff.

Bobbie
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Re: VENT

Postby Bobbie » Sun Sep 10, 2017 10:40 pm

Zapper. So sorry. You have a "lot on your plate."

It took months after a FMT to feel better. Went to the U.K. For son's wedding and was miserable the whole time. Finally better for several years until several months ago. No antibiotics. Negative for c diff. Diagnosis : IBS - that great "catch all" diagnosis.

You will get better but it takes the "patience of a saint" to emerge from c diff intact mentally and physically. Try some of the moderators' suggestions.

georgina
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Re: VENT

Postby georgina » Mon Sep 11, 2017 12:45 am

Xifaxin worked for me every time I used it (used 4 times , 10 days course) , it got me great relief of symptoms , you should discuss with your doctor about it.

justme
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Re: VENT

Postby justme » Fri Dec 08, 2017 6:04 pm

IBS is a bi*ch and doesn't seem to get much better as time goes on. It's been five years post C. Diff for me and I'm trying to diversify my diet and venture into introducing some of the food I used to eat prior to C-Diff. Unfortunately, I have the additional issue of a damaged heart and brain (from a SCA at LAX in 2007), so that raises issues with IBS medications (as they can affect cognition). Some of the food that I can eat that do not cause an IBS reaction, like Papaya and Bananas, etc., are causing problems with my kidneys. It seems like I can't win and it can be depressing. I have a new doctor (I called her the Fema-Nazi in a previous post) wants me to discontinue using Bentyl, wants to take me off Xanax (which has a calming effect when I have an attack), etc. although I do not use it except when I have IBS and only take a half. It is very frustrating. Antidepressants have been suggested as a better alternative to Xanax, so I might try that if my doctor agrees (although I am not depressed, just frustrated).

As a disclaimer, I think I am having a longer time completely recovering due to age and health issues, so my problems may be integral just to my body. The rest of you out there who have had this dreadful disease and are in the recovery stages, I hope you will all completely recover and look back on your experience with C. Diff as just an ugly blot on your life.

Aloha nui loa,
Anne


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