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Soon To Be Up A Creek Without A Colon

Meet Gillian:

I’m currently 29, and was diagnosed with UC a little over a year and a half ago….right after the birth of my daughter. I’ve been in a constant flare since then, none of the meds worked and i kept getting worse. I ended up on remicade which worked for 2 months and then stopped working and I’ve just gotten so bad i can’t function at all. I’m going in for the 3 part jpouch surgery tues Oct. 9th. hoping to get my life back soon….

Colitis Symptoms That Are Driving Me Crazy:

abdominal pain, bloody and mucusy diarrhea. no energy, can’t eat or drink anything without feeling sick right away and rushing to the bathroom. light-headed a lot from lack of food. overall misery and stress and anxiety.

Ulcerative Colitis Story:

I am getting the jpouch surgery on Tues. Oct 9th…just a few days away. I’ll have a bag for a wile in between now and the final surgery. I’m very handy with sewing and was trying to find a pattern or tips for making my own ostomy support-cover up belt. If anyone has any links or ideas that worked for them that would be awesome. also, any tips for making the recovery easier and adjusting would be greatly appreciated. I’m more bummed out by the fact that i won’t be able to pick up my daughter for a few weeks…hard with a climbing crazy toddler!

Thanks!!

I hate having Ulcerative Colitis and would love it to have never happened to me, but it has meant that I met and made friends with some amazing people who wouldn’t be in my life otherwise, so it’s got it’s ups and downs. My family has been amazing and helped me more than I’ll be able to repay…but i guess I’m lucky in that regard. My friends have also been so great helping me thru all of this craziness.
I know lots of people out there who have had UC longer than me, but I feel like it seems like forever since i was able to function at a normal level and I really can’t wait to get back to something closer to “normal”

Where I’d like to be in 1 year:

healthy and back to being able to care for myself and family and able to do activities like Warrior Dash again!

Colitis Medications:

I hate prednisone, does not work for me but i get every one of the stupid side effects….can’t wait to be off the stuff….it turns me into crazy mega-bitch :(

written by Gillian

submitted in the colitis venting area




jpouch

11 Responses to Soon To Be Up A Creek Without A Colon

  1. Adam
    Adam October 8, 2012 at 9:04 pm #

    Good luck tomorrow Gillian!

    Wishing you well and smooth recovery too!

    You deserve it,

    -Adam

  2. Christine October 8, 2012 at 10:15 pm #

    Good luck, Gillian!! I just met w my surgeon for the first time today. I’ve had colitis since early 2009, and I know how bad it can be. I’m in the middle of a flare now (and am up at 1am w anxiety and my mind won’t stop racing about everything). I’ll probably have the first surgery in a few weeks…the remicade (thats not working) has to get out of my system first. I’m jealous that u get to go tomorrow. I know its scary, but you’ll do great and you’ll be so glad u did it!! Best of luck and here’s to a smooth recovery and your life back!

    • Baker
      Baker October 9, 2012 at 5:45 am #

      Christine, when was your last Remicade treatment? I was taking it every 8 weeks and the docs wanted me at 4-6 weeks after my last treatment (the schedule worked out at 6 weeks) for surgery so I was controlled but also tapering off the drug so that my immune system wasn’t overly weakened. Sounds like you’re not responding to Remicade so that all might be irrelevant.

  3. Baker
    Baker October 9, 2012 at 5:42 am #

    Good luck Gillian, I’m heading in for my surgery on the 11th so right behind you! I’m fortunate that I’m not flaring right now so I’ve opted for the 2-step procedure. Can’t wait to be off the meds and colitis free!

    • gillian jule October 14, 2012 at 3:27 pm #

      hey, just wonderig how your surgery went? i’m going home tomorrow, feel so much better, though i finally started bruising and i look like i tried to take on a band on ninja’s with my belly…it’s so icky looking but that will fade and i honestly feel amazing compared to be4 so i’m supper happy so far. hope you have a good recovery, try to get up and walk asap, it does help. stay possitive, i try to keep a sense of humor about all of it and make lots of jokes, it helps me get thru it all. good luck and hope to hear you are doing well!

  4. Lisa OH
    Lisa October 9, 2012 at 7:22 am #

    Hi Gillian. I am currently waiting on my final 3rd of 3 jpouch surgeries. So far, so good. I was diagnosed Dec 2011 and by Feb 2012, my colon became toxic so it had to come out (whole gory story here: http://lisakapp.blogspot.com/). You will get used the ostomy bag and realize it’s not that big of a deal. Here’s a link to some bag covers:
    http://www.cmostomysupply.com/cm_html/p_pouchuse.html

    Here’s a link to a GREAT website that includes links to ostomy supplies (covers): http://fullfrontalostomy.com/my-friends-2/

    Good luck with your surgery!! Sending healing thoughts your way!

    Lisa

  5. Clayton October 10, 2012 at 10:19 am #

    Wishing you good luck with your surgeries. Had UC for 16yrs before j pouch surgery. Was on Remicade and all the other meds before then.

    My jpouch has been a mixed bag. Have had some issues with pouchitis on and off varies antibiotics.
    (Cipro, Flagyl and now amoxicillin)

    If anyone has been through similar situation and has suggestions please reply

    Good luck to you all

  6. Bev October 10, 2012 at 2:52 pm #

    Soon, Gillian, you will no doubtedly feel like a human being once again!!

    Be stoked about that. If you are living so miserably now, then maybe this is the way!!

    Cheers:)

  7. Blake October 10, 2012 at 7:48 pm #

    Hey Gillian,
    I suggest the Nu-Hope belts. That’s what I wore. I wore it to the gym, wore it to work, wore it about everywhere. Basically, all it’s just an elastic belt that has a hole in it to fit your bag through. It provides great support, the part where the hole is reinforced with a cardboard like material. It’s great to put on right after you change a bag to get a really good stick and found that it would increase the number of days I could wear my bag without changing. I would sometimes wear an ace bandage over the belt and the ostomy just to keep the actual ostomy bag from showing through clothes. I found out that wasn’t very necessary after a while though. You want to figure out what kind of bag you like best first before you order so you can get the hole size just right though, so don’t order it until you know what you’re going for if you do decide to get it. I messed around with some other belts that just didn’t cut it. I found out that the simpler the design is, the better it works. Good luck with the 3 surgeries!

  8. gillian jule October 11, 2012 at 6:03 pm #

    thanks for all the well wishes…the surgery went well…scars and incisions are all looking good, stoma is stellar…nice and red not too freaky looking. suprised at how little pain i’m in..though my shoulder is the worst…becasue they pump ya full of air to do it lapriscopically so now it’s all the air pressure raising to my shoulder when i sit, so that’s the most painful part, but considering that it’s not too bad.
    i’m feeling really good about it all. sore and all but not that same constant pain so i’m happy iwth my decision. already plannign on making some fun covers for my lovely little bag and keeping the jokes rolling to keep myself in a good mind set. I keep cracking up since they dr’s put a sign on the wall by my bed that says “no rectal intrusions” every time i look over i laugh, then i go “ow” then i laugh again.
    my stupid cathadar leeks when i stand so that’s not the most fun, but my awesome best friend jumped in with the wash cloths and helped clean off my legs, just proving how amazing good friends can be.

    not getting much rest in the hospital but oh well, it’s hard to get comfy with wires all over the place, cathadars in, iv’s all over and such.

    thanks for all the site recomendations, i’ll be looking into them very soon. :)

  9. gillian jule October 14, 2012 at 3:30 pm #

    going home from the hospital tomorrow! horay can’t wait! feel much better. though i started to get bruising (a little delay on it) and now my belly looks like a rotton speckled easter egg in purple, black and greenish tones….very appropriate for halloween i guess. sore, but not the usual gut ripping pain, so it’s a vast improvement…feel better every day. so happy with the choice to do the surgery…know it’s gonna be a long and crazy year between healing and then the next two surgeries, but i’m in a very very good place mentally and everyone is so supportive, i’m just glad to have this all finally going in the right direction. even have a fun new project for myself…making my ostomy bag covers to look like designer bag knock-offs….just for the silly factor. i’m a fun loving joking kinda person so that’s how i deal, and it’s been working well!

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