Just looking for some encouragement

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Zapper
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Just looking for some encouragement

Postby Zapper » Mon May 29, 2017 10:55 pm

Hi everyone,
I am 4 days post 2nd FMT and starting to not feel well today. I'm hoping PI-IBS.. I've gone about 6 times but no D yet just soft with abd pains. I've really kept myself to a bland diet.. except today I allowed myself some iceberg lettuce and black beans with my chicken and rice. The bms started before I even finished my meal so I'm unsure if it was really the food.
Anyway..... I'm just exhausted. I don't know how people with multiple relapses keep going on. I've lost count on mine. All I know is that if I relapse again I have no idea what to do next. I've done everything humanly possible to beat this. All antibiotics.. tapers.. probiotics.. diet.. coconut oil and oil of oregano.. bedrest.. and now 2 FMTs.
Keeping positive seems almost impossible when I'm back in the bathroom multiple times a night again. I even have bruises from sitting for so long for all the time spent from c diff and colon preps! I just can't anymore....
I know recovery is a long road itself. I just wish I could know if I'm on it or not.

Blah.... long weekend and now back to work. Hopefully my stomach and my 7 month old allows me sleep tonight cause I sure need it badly.

beth22
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Re: Just looking for some encouragement

Postby beth22 » Tue May 30, 2017 12:03 am

I would not eat lettuce or raw fruit or vegetables for a while. Those are really hard on the GI tract, especially after c difficile and FMT. Remember, you had a colonoscopy for that procedure and you need to recover from that too.

NanciT
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Re: Just looking for some encouragement

Postby NanciT » Tue May 30, 2017 12:05 am

Sorry you are feeling poorly, my guess would be the iceburg and beans. The iceburg is hard to digest, sometimes there is no answer to this. I ate a chicken sandwich 3 days ago and did great. Had the same thing today and quickly got sick (D) and felt terrible for a few hours. I have no idea why...for me it is Post IBS.
It can be very frustrating and that terrible fear comes back. You need time to heal, it can be a slow process but hopefully you will feel better tomorrow. Stick with bland a few days and when you add things try a very small amount. I find this works best.
Give yourself the time, you WILL get there!!
Hoping for a brighter day tomorrow!
NanciT

NikaNik
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Re: Just looking for some encouragement

Postby NikaNik » Tue May 30, 2017 12:29 am

I'm so sorry you're feeling this way. Take things one day, or even one moment at a time. I echo what Beth and Nanci have said. Greens can be tough on the post c diff system. PI-IBS can be frustrating, too. I'm two years out from c diff and still have days where I go several times. I still cannot eat much salad (used to eat huge salads 3 days a week before c diff). And, like Nanci, I can eat the same thing one day and have D not long after eating it or even before I finish it, then eat the same thing another day and be fine! We had dinner with friends a few weeks ago. I had D at the restaurant around 20 minutes after eating. The next day I had the leftovers and was totally fine. I never had IBS before c diff. BUT most days are great and the farther out you get the fear and anxiety lessens. If you had told me two years ago that I would've felt as good as I have and eaten so many yummy foods I love, I would've said you were crazy. But it's possible! You WILL get there! Hang in there. And congrats on your little one - hope he/she lets you get some sleep. : )

-Nikki
Last edited by NikaNik on Tue May 30, 2017 2:21 pm, edited 1 time in total.

Zapper
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Re: Just looking for some encouragement

Postby Zapper » Tue May 30, 2017 1:54 pm

I'm curious.. do any of you use pepto or Imodium to eat? Previously before c diff with my IBS I would take 1-4 Imodiums daily to keep my bms at 1-2 daily. I don't know if this would be OK during my recovery as that is my "normal". At least so I can try to eat more than chicken, rice, banana, and avocado.

roy
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Re: Just looking for some encouragement

Postby roy » Tue May 30, 2017 2:07 pm

If you were having to take Imodium daily before c.diff then something was obviously wrong.
I don't know how your ever going to tell if c.diff is gone if you have relied on antimotility meds for a long time.
Testing to see if its gone is notoriously innacurate but it seems your symptoms can't be relied upon either.
Have you told your Dr about your previous use of imodium? its probably very significant in assesing your current diagnosis.
Check with your Dr before taking it again.
You could do serious harm.

NikaNik
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Re: Just looking for some encouragement

Postby NikaNik » Tue May 30, 2017 2:30 pm

Hi, Zapper - I don't take Immodium or Pepto for the IBS. I typically go 1-3 times a day on average (occasionally every other day), but even on the days I go more or occasionally have D, I just ride it out rather than take anything. Mine seems more tied to stress and/or my cycle. I take probiotics but I don't believe there is proof they help with IBS. During my Dificid taper and for six months after it, my c diff specialist put me on something called Enteragam (a medical food that is supposed to help heal the gut, absorb c diff toxins and help with IBS). So that is something you could ask your doctor about. Here is the link: http://enteragam.com

Zapper
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Re: Just looking for some encouragement

Postby Zapper » Tue May 30, 2017 3:41 pm

Roy, yes my GI was aware of the previous use of Imodium. We had tested for everything under the sun years ago (ending with a colonoscopy) and everything was negative for issues except my igA deficiency. They even tested my liver function yearly for a few years with no harm.
Diarrhea is a symptom of the deficiency as well.
I honestly just want to get back to my life before c diff. I don't mind on taking daily Imodium for that.

It's just been a very hard week. I can't seem to stomach any foods. I was able to eat a few saltines but now I have a migraine most likely to lack of calories.
It's just so hard to imagine that every person feels like this. I don't understand how people can work and function.

georgina
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Re: Just looking for some encouragement

Postby georgina » Wed May 31, 2017 12:29 am

I think the combination of beans and lettuce flared up your IBS , your symptoms are most likely from what you ate. Leafy greens or high fiber will most likely irritate your gut , that is why your doctor told you to stay on low fiber.
Don't know if Pepto is a option for you after FMT as it has some antibacterial properties and your new transferred bacteria didn't had the time to recolonize the gut properly ,and Immodium will just stop fast transit but won't bulk up your stool . Maybe a binding agent like Questran or Enteragam will work better for you but that is something to ask your doctor first.

Zapper
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Re: Just looking for some encouragement

Postby Zapper » Thu Jun 01, 2017 1:39 pm

Well, I haven't changed my diet. Still eating just chicken rice avocado and banana with some toast here and there.
Now I'm having abdominal cramping. Pretty moderate. Seems to be worse in the morning/early afternoon so it seems like PI-IBS. I've lost another pound these past 2 days. My guess cause I'm not able to take in calories...

When does it start to get better? I understand I can't eat a cheeseburger but when will I be able to eat without pain and several bms? I had such high hopes for the FMT.. it just doesn't seem to be working as quickly as I hoped.

Sigh.

amg
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Re: Just looking for some encouragement

Postby amg » Thu Jun 01, 2017 2:09 pm

Maybe it's the avocado? It is rich in fats and maybe that is a little too much for you right now?

I know with my daughter after c diff, it was (and is!) difficult to predict every problematic food. Avocado didn't agree with her though.

Zapper
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Re: Just looking for some encouragement

Postby Zapper » Thu Jun 01, 2017 2:14 pm

Not sure... avocado has always been one of the foods I can tolerate. I would hate to take it off the list of what little things I can have. I didn't have any problems last week with it. But things change I guess?
It's been hard. All I ate prior to the FMTs was salad, avocado, and some chicken and fish. Primarily my diet was salads and raw veggies. It's been very difficult to not eat them.

roy
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Re: Just looking for some encouragement

Postby roy » Thu Jun 01, 2017 5:09 pm

If I am reading this right you were eating salad, raw veg and avocado before the FMT and while you had gut problems indicating a relapsing c.diff disease but say it was not causing problems.
Did you not even consider that your diet might be adding to your symptoms?
Almost all on here would say a diet like that would almost cripple them!
It's not a case of skipping them for a day or two, some posters have to avoid them for months.
Your gut has to work hard to digest raw veg and that can cause all sorts of IBS type problems.

Zapper
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Re: Just looking for some encouragement

Postby Zapper » Thu Jun 01, 2017 5:24 pm

Hi Roy,
Yes, I did mainly eat those things. While on vanco and dificid I tolerated the meds very well and was typically able to eat whatever I wanted with little issue. I would have stomach problems here and there but never anything disabling.
During relapses I basically either didn't eat or kept to a brat diet. Once my stomach settles I add chicken and avocado as those I always seemed to tolerate the best. Usually during a relapse, until I'm on meds again, I wasn't able to each much.

This is new for me... I haven't been off antibiotics since November 2015 (minus the several relapse periods but never more than a week). I really don't know how to deal. I don't have any vices in life (smoking drinking etc). I just have food. I'm 5'7" and currently about 115 on a good day. I'm slowly getting back to my sickly figure I had before. I want to eat so bad. I have an appetite and feel very hungry. My body just doesn't want to allow it. Or the foods just go right thru me.
I guess I thought I would be able to tolerate much more than what I have been able to. The bananas and rice make me nauseous now since that's all I've had for 7 days.

Davidtm
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Re: Just looking for some encouragement

Postby Davidtm » Thu Jun 01, 2017 6:12 pm

I would ask your dr what else you can add to your diet. We need a variety of natural vitamins, minerals, fats, proteins, and carbs found in a balanced diet in order for our bodies to run their best. I know that everyone is different and What works for some doesn't work for others. For me during relapses in the past I would eat extremely bland since the gut was damaged but once it started healing I ate whatever I wanted with the exception of alcohol, sweets, and dairy. By the time I had my fmt the last time things were pretty normal. I was told to resume normal eating post fmt with the exception of those 3 things because they can be hard on the gut. I had a rough few weeks to start and I thought I was relapsing every other day. So hopefully you will see improvement after the first few weeks post fmt or sooner. Bananas and rice only for 7 days doesn't seem like adequate nutrition to me and your M.D should be able to help or refer regarding that aspect of your care. Not surprised you're losing weight on that diet. People in prison eat better than that. You've been on meds for so long and have been through quite an ordeal. After so long I don't see how ibs wouldn't be a factor as your gut heals and recovers.
Keep the faith and one day you'll get past it. I'm really crossing my fingers for you.


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