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Hi everyone!

I officially had my Proctocolectomy w/jpouch on Dec. 17th with a 7 day hospital stay---and am due to have my takedown on Feb. 22nd.

I had an AMAZING surgeon and he's been having me call one of the nurses on his team everyday---literally EVERYDAY---at 10 am in the morning to tell him my output the day before, concerns, etc.  So that's great that they're so on top of things.

But I'm 4 1/2 weeks out and I'm STILL exhausted!  My flare before my surgery was pretty much 7 months long---but I'm having a hard time coping with being immobile.  It makes me feel pathetic.

During my first checkup with my ostomy nurse---she told me to start taking the Imodium they gave me two times a day---So I took one the minute I got home.  Within the hour I had so much more energy!  And I was able to walk the 6 blocks to the grocery store, shop, AND come back--when I could BARELY walk one block before!  So I continued with it.  That was about a week ago.

The past 4 days though started getting difficult.  My stomach began to swell and felt really sore.  I haven't felt the need to take any of the pain killers they gave me until then.  The same night I broke out into a low fever so I took some Tylenol and that helped it go away--but that concerned me.  And then the past couple days I started feeling a little exhausted again---and I can't sleep for the life of myself!

My nurse that I call everyday wanted me to be very careful with the Imodium---he doesn't want my output to be too low and he said it could make my tummy sore.  Ah-ha!  So today was the first day that I stopped taking it.  And guess what---full blown exhaustion again!  I also broke out into another low fever tonight!  And not sleeping either!

I just want to make progress.  Maybe this is just gonna take me longer to heal from.  . I know I'm being whiny---but I'm having a hard time.

Also---I get soooo hungry sooooo fast!  I eat a lot of protein---I don't eat grains or patatoes---so my carbs I'm still trying to figure out since now there's NEW things on my list I can't eat for blockages.

Has anyone gone through something similar?

Any advice would be greatly appreciated!  Thank you!

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It took me a full year to feel like my stamina was restored. Granted, I was troubled with some nasty complications, so my recovery was delayed longer than most. 

My advice? Don't expect too much too soon. Over seven months you depleted all your reserves, then you had one of the most traumatizing surgeries. It takes time, and lots of it, to rebuild your tissues. Your body needs more rest than what is normal, plus your gut is learning to deal with a lack of a colon. There is no vitamin or supplement for this.

Cut yourself some slack and keep your schedule simple. Expand your itinerary only after you feel like you have extra energy. Don't be too disappointed about setbacks. They are temporary and inevitable. It is natural to want this to be over already. I get that. But, wishing it does not make it so.

Jan

Jan Dollar

listen to Jan, not much to add to excellent advice.

I am puzzled why Immodium per se would energize you. but curious that you note the correlation. I would suspect that the immodium did stall your output some and maybe that was the source of pain. ah the only thing as I think while typing is that perhaps the immodium stalling peristalsis also allowed for more nutritional value to be absorbed by your small intestines rather than having it fly through. not sure.

but most importantly be kind and patient with yourself. you've been through the wringer, it will take time to heal and recover but heal and recover you will.

 

deweyj

Dewey is right. The Imodium probably gave you energy indirectly by slowing your gut and improving water absorption. Slower transit time also means more nutrients absorbed. That is the good news.

The not so good news is that Imodium has a cumulative effect. It will build up over several days, so you need to pay attention to your output and adjust your dose accordingly. So, rather than take it for several days, then stop it completely, it is best to start off with a low dose and gradually increase it until you find your perfect daily maximum. Keep in mind that as your gut adapts, you should need less and less gut slowing.

So, it is sort of a tricky thing and many of us get ourselves in a pickle by being complacent and not adjusting as we go. Yes, I fall prey to it too!

Jan

Jan Dollar

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