REMINDER: You’re still sick.
I posted on the BPT facebook page earlier last week that I had pouchitis and that I was taking Flagyl for it.
Well…I got cocky.
I felt better within a few days and like a total dumb ass stopped taking the Flagyl after only about 5 days, only half of the recommended course. In the past this has worked for me, however I was not so lucky this time. It came back, and it came back angry. I noticed it again last Thursday but it really took a toll on Friday. I decided to start taking the Flagyl again but by that time the damage was already done. I laid on the couch most of Friday, Saturday and Sunday hoping to get less tired and feel better but it didn’t really help. So add in some person life drama, and drinking way too much coffee over the last few weeks and bam. Tuesday I checked myself into the ER for pouchitis and severe dehydration.
If you’re like me, you debate the ER for about 3 days before actually going. I called at least 4 friends to get their opinions. I even had my spiel for the doctors and nurses ready to go. It went something like, ” Hi, I have pouchitis and I’m dehydrated, just get me some saline and a CBC and I’ll be out of your way”. But we all know what never really works. By the time I decided to actually go, I needed to go. I got there and after I got taken back, and put in the hallway (which is so fun as a patient , I literally could not keep my head up I was so drained. I had to take a huge breath before speaking because I was out of breath, and light headed. If I had waited much longer, I probably would have needed a ride, and I hate having other people drive me to the ER. I hate inconveniencing anyone else with my stupid body.
So I get there and after about an hour and a half, I finally got my IV and my fluids. Shockingly it only took one poke, but of course it wasn’t after the nurse telling me over and over how small and deep my veins were, which generally just gets me primed to ask for another nurse, but she got it, and only after like digging around for a few short seconds. To her credit, I’m not even bruised. Well done over chatty nurse, well done. So here is the best/worst part of the ER. They only half hear what you’re saying. They asked if I had pain or nausea, and I really didn’t so I said no, or it was minimal. So when the nurse came back with my goodies she brought, saline, IV Flagyl, IV Benadryl, IV Zofran, and IV Dilaudid. I was like, well, I’m never one to turn down the fun meds so shoot up, but srsly….doctors of the world, does anyone listen? I was actually pretty stoked for the Benadryl because it would help me sleep, Zofran and Diladud are like a weird fucked up bonus.
This ER story is much like many others. They gave me drugs I didn’t need, the Resident treated me like I was an idiot, and the nurses were amazing. The end. I decided to stay in observation for a few extra hours just to get the extra fluids because I thought I’d go to work the next day. But I didn’t. I woke up feeling better, but still just so damn tired. So I stayed home and wished I had stayed in observation for 24 hours so I could have gotten the fluids.
I’ve decided to turn my life into a drinking game to keep myself hydrated. Wake up – Drink. Take a shower – drink. Pet your dog – drink. Check facebook – drink. Its really a totally blast. Actually, its not, I hate trying to stay on top of my hydration. I suck at it, because I drink enough water for normal people, but not enough for the colonless. So I’m posted up at work today with some pedialyte and a water bottle.
So what are the lessons we’ve learned from my mistakes?
Take your damn Flagyl for the whole course.
Also above all this reminded me that no matter how far I run, or how many programs Girls With Guts has, or how many degrees I get, or the fancy job that I have…I am still chronically ill. Not that I pretended not to be, or that I thought this was all past me, but I was doing so well for a really long time. And I got careless. The worst part about all of it, is realizing that this is my fault and it all could have been prevented. I realized a long time ago that I am not fragile, but it took this to remind me that I am not indestructible.
March 7th, 2013 at 10:17 am
Jackie, take the pouchitis VERY seriously. I just lost my pouch after 22 years because I was diagnosed with UC, but actually had Crohn’s. I went untreated by a gastro for 20 of the 22 years, had many bouts of pouchitis which were probably truly Crohn’s flares and developed a stricture. I’m currently recovering from my 14th surgical procedure. On Feb 21, my surgeon performed a permanent ileostomy on me. Please, please, please listen to your doctors and I hope you are still seeing a gastro to make sure your pouchitis is NOT truly Crohn’s disguising itself as pouchitis .
March 7th, 2013 at 10:22 am
I do take it seriously, however it has always been really easy to treat in the past.
I do not see a GI as I totally lost faith in every single one of them. I do still see my surgeon when I have an issue.
March 7th, 2013 at 10:26 am
That sounded totally bitchy. I didn’t mean for it to come off that way.
March 7th, 2013 at 12:47 pm
Hi listen to what people are saying to you because i didn’t and i have ended up with a per, ileostomy and i don.t want you to if you can get out of it, so please take what people are saying to you and think that you are very lucky that you have people who care about you, I do I wouldn’t like you to go throw what I had too, so please listen to them. jan
March 7th, 2013 at 1:31 pm
Giiirrrrrrlll! I’ve been way worried about you! And now, especially, I want to kick your butt! But I get it…totally. When I lived the life of a normal person, I would do crap like this all the time, maybe not to your extreme since I have a colon. I would be all “look at me world! I feel great! Sure I can take on 97 projects…no problem. Can I get wasted Friday night? Heck yeah! Bring on the shots!”. Then boom! Down for the count and not able to understand why. I hate blaming so much on my IBD and my meds, but it is what it is. Unless I want to be bed-bound for years again, I have to do better at recognizing when I need to slow down. And I also sometimes need to recognize that while I have a plethora of knowledge about the body and the medical field, I still am no doctor and I don’t always know best….like you, stopping your flagyl. Even I know not to do that
I’m glad you are feeling better and back to your “tell ‘em like it is self”! I like her the best! **hugs**
March 7th, 2013 at 1:31 pm
I feel for you! I have just had J pouch surgery in January, didn’t get to do the two step either! I hate water, but am trying real hard to drink a lot. Still learning what I should and shouldn’t eat too.
March 7th, 2013 at 3:35 pm
Can I flush your pouchitis down the crapper!!!??
Take it easy on yourself… it is easy to forget when you finally feel better after years of taking the backseat! You will get through this one and I am sure you will learn something important in this moments wake. We have all had 20/20 vision after the fact.
REMEMBER: This too shall pass~
always,
Sarah<3
March 7th, 2013 at 4:57 pm
jackie.. that er story is hilarious. From debating for days whether to go to the ER, consulting your friends, figuring some doctor might actually help you so you can avoid the ER, to getting drugs you don’t even need in the ER… all just happened again to me a week or so ago. Except you forgot the part where you have to teach the ER doctors about your anatomy and convince them that yes people can live without colons.
Seriously though.. get yourself hooked up on an electrolyte drink that you like. I use a WHO solution powder and mix it in crystal light. I have several stainless steel bottles that I keep filled and always have with me. If you can get into a habit like this.. then you won’t have to try to play catch up all the time.
good luck.
March 24th, 2013 at 9:41 am
I just got an illieostomy. What is pouchitis? I am constantly thirsty. Is that from the new gi system? Guess ill do more reading.
March 24th, 2013 at 9:45 am
Hey Derek!
Pouchitis is inflammation in the Jpouch. It is not related to an ileostomy.
But your ileostomy could be the culprit for your thirst. When you don’t have a large intestine, the organ that absorbs everything…is gone. Your small intestine will slowly learn to absorb, but it will never be as good as your large intestine was. So with an ileo, you have to drink a TON. Ostomates and jpouchers are always on the verge of dehydration. Its pretty easy to get dehydrated, so you really need to make sure you’re drinking a ton. I always have a water bottle around me. I just got careless this time.
April 10th, 2013 at 12:17 am
When I originally commented I clicked the -Notify me when new comments are added- checkbox and now each and every time a comment is added I get 4 emails with the very same comment. Is there any way you’ll be able to remove me from that service? Thanks!
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