Update on my PI-IBS

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Ali-Mar
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Re: Update on my PI-IBS

Postby Ali-Mar » Sun Jul 05, 2020 6:40 pm

Hang in there, Poppy, you are getting really close to the finish line. My GI told me; once you pass the six weeks post-treatment mark, you are safe! The CDC website states, 2- 8 weeks post-treatment, you are almost there. I had a horrible day yesterday; it was so bad that I called the on-call Dr. The recovery is a rocky road with a lot of ups and downs
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Wed Jul 08, 2020 12:54 pm

Another update. I still have tenesmus most of the time, and the BMs are all over the map. Today I feel dizzy and nauseous. I'm 4'11, and I started all this at 110 pounds. I have lost almost 20 at this point, so I'm very underweight. But with so many trigger foods, my diet is limited, and what I do eat goes through quickly. I'll talk to my doctor on Friday. The last time I spoke to him, he said the weight loss was normal and to be expected. The hemorrhoids continue to flare up off and on, every few days.

I wake up every day somewhere between 4 and 6 AM to have a BM. Then a morning rush follows, after which sometimes I'm done for the day, sometimes not. My gut continues to make a lot of rumbling and churning noises, sometimes with pain in the left side. I'm so tired with lack of sleep because I wake up just about every hour and then struggle to fall back asleep due to all the rumbling.

So that's how I've been doing. I guess this is pretty standard for pi-ibs.

NanciT
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Re: Update on my PI-IBS

Postby NanciT » Wed Jul 08, 2020 1:49 pm

Sorry you are going through this....the Post IBS can be terrible. There are medications that can help. I take hycosamine on and off and it does help. There are also medications for the hemorrhoids. Maybe talk with your GI about them.

I use a heating pad on and off which helps, I also wear Sea Bands that can help the nausea. I am now 9 weeks out, still things are all over the place. This is my 2nd time with CDIFF, first was 6 years ago. My recovery took time but slowly the good days out weighed the bad. There are some foods I never could tolerate anymore and days I would just go bland when I felt bad.

Wishing you better days

NanciT

Ali-Mar
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Re: Update on my PI-IBS

Postby Ali-Mar » Wed Jul 08, 2020 2:56 pm

Poppy so sorry that you are still fighting PI-IBS - hope you will get better soon
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ril
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Re: Update on my PI-IBS

Postby Ril » Wed Jul 08, 2020 9:26 pm

I too struggled with severe PI IBS and unfortunately battled it for a long time. As a result I know there are many medications that can be tried to help you. As NanciT mentioned, one of the first ones tried is usually hyoscamine, an antispasmodic, because you are just starting recovery. Discuss your symptoms with your dr. They are classic.
And don’t suffer with hemorrhoids. For sure get a prescription for those!

Rita

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Thu Jul 09, 2020 8:19 am

Thank you NanciT, Ali-Mar, and Ril for your replies, I appreciate the support. I hope you guys are feeling better very soon as well. Tomorrow I have a telehealth visit with my gastroenterologist, and hopefully he has some suggestions for me, particularly for the hemorrhoids. I had no idea recovery could be such a challenge.

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Sat Jul 11, 2020 3:29 pm

I spoke to my doctor yesterday, and he suggested Benefiber, and he also prescribed a medication called dicyclomine that I haven't tried yet.

I just had watery D twice today (and had to go 4 or 5 times before that). It makes me so nervous. My period is due to start in a couple days, so hopefully that's the cause.

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Sun Jul 19, 2020 9:52 am

It has now been 7 weeks since I finished the vanco taper. The IBS continues to be hard to deal with. I didn't yet try the dicyclomine because one of the side effects is dry eye, and I already have severe chronic dry eye. So I'm hesitant to use that. Sometimes it seems a meal goes through me in about 10 hours. Other times the transit time is slower. I'm managing all the symptoms as well as I can. The abdominal pain, tenesmus, lack of sleep, and anxiety are the hardest.

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Tue Jul 21, 2020 11:14 am

I just had some watery D a couple times (and had gone 3 times before that) this morning, and I'm so nervous. I didn't eat anything unusual yesterday, in fact it was all bland and gentle foods. My stomach is rumbling and cramping too :(.

Ali-Mar
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Re: Update on my PI-IBS

Postby Ali-Mar » Tue Jul 21, 2020 11:58 am

I am so sorry to hear you are having a bad day, it is very uncommon to relapse at this point as you are close to 8 weeks out of Vanco taper now.. if it continues, maybe u can test?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

poppy86
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Re: Update on my PI-IBS

Postby poppy86 » Tue Jul 21, 2020 12:11 pm

I had to go two more times since I posted. Feeling worried. Thank you for your reply Ali, I'll just keep on waiting and hope it goes away very soon.

Ali-Mar
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Re: Update on my PI-IBS

Postby Ali-Mar » Tue Jul 21, 2020 12:31 pm

The thought of relapse is always very frightening, hope this will pass soon. At your point of recovery, the probability of relapse is very low. For my peace of mind, I always have a sample container from my ex dr office at the house in case I have to test, so I am ready to go and drop it off right away. And I pick up new containers for next time, I know it is freaky, but I feel more comfortable knowing I can test anytime

I highly doubt you are relapsing, most likely it is something else. Might be just stress. Stress always causes GI issues for me.

Ali
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

poppy86
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Joined: Sun Mar 29, 2020 10:23 pm

Re: Update on my PI-IBS

Postby poppy86 » Tue Jul 21, 2020 12:39 pm

Thanks Ali, I hope it's just stress too. I just had to go again, and it's just watery D :(. I'm scared. If it continues through today and tomorrow I will test.

poppy86
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Posts: 197
Joined: Sun Mar 29, 2020 10:23 pm

Re: Update on my PI-IBS

Postby poppy86 » Tue Jul 21, 2020 12:56 pm

I had watery D five times in the past two hours. I'm scared :(

Bobbie
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Re: Update on my PI-IBS

Postby Bobbie » Tue Jul 21, 2020 1:55 pm

Poppy86,

Call your doc. Let us know what he/she says. Hang on. Eventually, you will beat this.


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