Venting

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Zapper
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Venting

Postby Zapper » Sun Jul 09, 2017 10:25 pm

Feeling upset about my "recovery" after my 2nd FMT. I have been doing ok with my plain chicken and potato diet so I have expanded some. Little things here and there. Today I had a 1/2 slice of Swiss cheese in the afternoon and it has made me ridiculously ill all day. Lots of normal bms and m. It's the urgency that gets me.
Makes me panic every time. I would like to think that I am far enough out from my FMT that I shouldn't have to worry about a relapse but I can't help but think it when I barely make it to the bathroom.
I feel like crying on days like this. Hubby is just SO tired of hearing about all my bms and pain. Just wanted to vent.

beth22
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Re: Venting

Postby beth22 » Sun Jul 09, 2017 10:30 pm

Some people are not able to tolerate dairy after c diff. I am one of them. You can try and reintroduce at a later point in time, but right now I would stay away from it.

Zapper
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Re: Venting

Postby Zapper » Sun Jul 09, 2017 10:40 pm

Yeah I really wasn't planning on expanding. My husband convinced me to try since I've been doing so well and not having uncontrollable bms.
Now all I can do is run to the bathroom and cry. I understand his frustration cause he is tired of eating chicken etc. I told him he can make his own dinners.
Family wants answers to a specific timeframe until I can eat normal again... and I wish I knew some kind of answer for myself. I just feel so alone in my house.
No one seems to understand the food intolerance problem. I know I am supposed to expand to see what I can tolerate but this is god awful!

georgina
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Re: Venting

Postby georgina » Mon Jul 10, 2017 12:08 am

Sorry you are having issues again .Your husband has to understand that there is no time frame until you can return to whatever you were used to eat , it can take months until you can be able to digest a greasy pizza and not pay for it later . After repeated Cdiff treatments some people can be left with lots of food intolerances that can last for a lifetime : for lactose , gluten , leafy greens , onions or garlic , red meat etc. When i was on a diet i was cooking two meals , one for me and one for my husband. When i was too sick to cook for him he was cooking his own meals or he was just ordering food .

OCmama
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Re: Venting

Postby OCmama » Mon Jul 10, 2017 12:56 am

Hi Zapper :-) just wanted to say how sorry I am for all that you have suffered with this disease. I've followed your journey from the beginning, I was too sick to get it together to post anything, but I read everyone's posts and it helped immensely to know that I wasn't alone. I am sending you prayers for a strong recovery and healing.

-Angela

MKW
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Re: Venting

Postby MKW » Mon Jul 10, 2017 10:37 am

Zapper, I have often felt like my food limitations were more of a problem for others than me. I have screamed at more than one family member.. why is what I eat bothering you!!!
It's enough having to accept the loss of eating almost everything you enjoy without others constantly acting like they have experienced some type of loss or it is some extreme annoyance to them.
I cannot tell you what I have been through at my job which is corporate with constant food social events, and having to embarrassingly explain why I can't eat the food.
And I am tempted , so combining my temptation with their social pressure turns out with me eating something that makes me sick. Friday I ate pie at a work event, and almost had to cancel a family trip Saturday morning over it.
I totally understand your frustrations, and I know how it feels. And it's good for you to vent!

Musings
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Re: Venting

Postby Musings » Mon Jul 10, 2017 10:53 am

Dairy, even in smaller amounts, had me stuck in the bathroom ALL day in early recovery. Understand the desire to expand your diet but I would hold off on dairy for awhile longer and instead try new protein sources (fish is often easily digested so might be a good start as well as turkey), switch rice out for potatoes, and maybe work in easy to digest vegetables like well cooked green beans, squash, and zucchini.

I am 6+ months out from my last treatment and only very recently can tolerate dairy and still have to be careful on the amount (learned the hard way when I indulged in pizza over the July 4th weekend...)

~Lauren

Davidtm
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Re: Venting

Postby Davidtm » Mon Jul 10, 2017 1:02 pm

Hey zapper,
sorry to hear you experienced some issues from the Swiss. Dairy can be a hard thing to tolerate in early recovery. I have butter, occasional Swiss, and accidental dairy bites and I sometimes I've had issues and sometimes I haven't. It's my opinion that when we venture outside of our safe foods list we have the potential to work ourselves up and worry about the repercussions. I think that can cause some anxiety which doesn't make for good digestion and which starts the cycle of upset stomach. Not saying that some things truly cannot be tolerated I'm just saying that I think that could play a part. If you try new things or when I try new things I do it slowly and with a happy heart about it. trying not to worry about the effect it's going to have. I still avoid sweets and dairy but had chicken paprikash twice now (minus the sour cream) and was excited about the flavor! Time will get us all there and hopefully you can go back to pre c diff diet but if not I'm sure there are a lot of things you will still be able to enjoy.

Zapper
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Re: Venting

Postby Zapper » Mon Jul 10, 2017 2:55 pm

Thank you everyone. It's nice to have others that understand! It's frustrating enough that I can't eat what I want but my family just doesn't get it at all. Surprising, considering they have been present throughout all my procedures and hospitalizations.
I get it.. they are bored and pushing to expand. I want to expand too. But my body violently rejects the change. I am finally starting to feel better today after the morning IBS.

I am starting a new job (scary) and already facing issues with my first day/orientation day at the hospital. HR says lunch is provided. Confirmed no where to refrigerate any food. I would hate to have to explain to people I just met why I am only eating pretzels/bread etc. or why on earth I am eating a plain peanut butter sandwich when they provide a buffet lunch!!
I went to a wedding Saturday and was only able to eat bread as everything was either salads or had dairy. I got a lot of strange stares as I grabbed only a plate full of bread. This is difficult to say the least. I had no idea recovery would be just as difficult as the infection itself!

I keep praying that one day you guys can all see me healed and eating salad again!!! I can go without dairy and meat and everything as long as I can get my salad and raw veggies back!!!!!

Acres
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Re: Venting

Postby Acres » Mon Jul 10, 2017 2:58 pm

Hi,
It took me more than a year before I could eat 90% of my pre c.diff diet....
I made some serious food errors along the way resulting in days of misery (my anxiety and panic attacks didn't help the situation)....
During my recovery I ate boiled (no antibiotic) chicken breast, chicken soup with a little bit of carrots & celery, organic pita chips, homemade almond butter, jasmine rice, eggs, ground turkey, apple sauce & zucchini..... Drank ginger & chamomile tea....

Tried oatmeal at least 4 times without success, then one day it was fine....Now I eat it almost everyday....
My gut just needed time to heal.....

In the middle of my recovery a friend of mine suggested that I try mozzarella cheese. She said it was a very mild cheese....
I tried the part skim version and had no problems (I started with a very very small amount)....Maybe when you are ready to try again, my friends idea might help....

About 10 months into my recovery I started to eat ground flax seed (started with a small quantity and now I eat 2 tablespoons a day).......Everyone's gut is different, but it really helps mine.....

We all know what you are going through.....Praying for your recovery,
Scott

Scott

txjoanna
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Re: Venting

Postby txjoanna » Wed Jul 12, 2017 11:13 am

I hope everyone feels better soon. I recently had fmt its almost a month out now. Dr told me to go on regular diet. I honestly got tired of eating plain stuff and went got me a whopper chicken tenders lol. I said to myself well only way I'm gonna find out if I can tolerate it is if I just try it. I actually did OK, but I know everyone is different. It takes time and take it day by day, but you will get better soon :)

Zapper
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Re: Venting

Postby Zapper » Sat Jul 15, 2017 10:37 pm

It's been about a few days of very bland diet. Plain chick, rice, baked potato, toast, banana. I added egg and pineapple yesterday. Didn't seem to bothered all day but all night felt pain/discomfort and had several normal bms throughout day.
I am writing now cause for the past hour I've been having pain/gas/M. It's been 7 weeks post FMT. I guess I was going for a better outcome by this time.
I am growing tired of this. We planned a trip to the county fair tomorrow with my 9 month old but it's starting to look like I will need to stay home.... again.
This c diff thing is really a bummer for the social life.

sophie
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Re: Venting

Postby sophie » Sun Jul 16, 2017 11:25 am

Zapper - I hear what you're saying. It would be nice if tomorrow we could add everything. I'm hesitant about adding new things just cause i don't like going through the discomfort when something doesn't agree with me. I still don't understand how often/how soon new items should be added.
I feel bad your plans may have to be changed. Maybe a suggestion would be not to add anything for up to 3 days before a planned event? I'm sure as time goes on you won't have to do that, but 7 weeks is still a short amount of time for complete recovery.
How long did others wait before they attempted to add food back?

Zapper
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Re: Venting

Postby Zapper » Sun Jul 16, 2017 12:14 pm

Not sure... the main answer is no one is the same with recovery.
I am afraid mine might not be a food intolerance after all but a relapse. I was up all night with M and urgency/incontinence. Called the on call doc and says to wait for Monday or go to the ER if my symptoms worsen. I don't have severe abd pain (never did with any relapse) but the 8 bms of M doesn't seem to bother them right now.
Sure bothers me since I've been up since 12am but I'll try my best to wait it out as I don't want to go to the ER.


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