UC to J-Pouch Story

Photos: Jenelle


I was so pleased to have found this wonderful site run my Mark and Megan that I decided to get involved myself.  I’m in the middle of all this right now (have had the first surgery, second surgery date TBA) and have some experiences that I think are worth sharing.  I plan to begin with a rundown of my story thus far and then add some posts about particular issues that I have dealt with since (e.g., body image, coping, female perspective, complications from surgery).

First a little background about me. I’m a 27-year-old female from Canada. I am a Ph.D. student in psychology and a researcher for the federal government. I live with my boyfriend/partner/common-law….never know quite what to call him.

I was diagnosed in December 2005 with UC, although it only affected a small part of my colon.  I responded well to medication and the prognosis was that I would most likely take medication for years, if not the rest of my life, and that would be that.  I did have regular flare-ups (every spring) but a bit of extra medication and things were back to normal.  That is, until this year.  I had my usual spring flare-up, but the medication didn’t beat it back into submission after a few days as it normally does.  I also had pretty severe nausea, which was a new symptom for me.  My GI specialist was off sick herself and my family doctor referred me off to a new GI.  New medications still did not work.  I was progressively getting sicker, being able to eat little, losing an incredible amount of blood, having almost no energy and feeling very lightheaded.  I would have to take breaks while trying to get dressed for work (Yes, I kept working too long.  Yes, I was being stubborn about it.)  Finally, I ended up being submitted to the hospital after a second ER visit where I was told I’d be in for 2 to 5 days.  I’d basically get some IV steriods, get rehydrated and then get out of there.

Thing did not go as planned in any way, shape or form.  Steroids did nothing.  I tried Remicade (a drug that is more often used for Crohn’s disease, but has some testing on UC).  Remicade is incredibly expensive (about $25,000 for a year – very thankful for my government job and benefits!) and there was enthusiasm about it, but it made no difference.  At this point, I’d been in the hospital for almost 2 weeks and was receiving blood transfusions just to keep my hemoglobin at an acceptable level.  I was experiencing excruciating bouts of pain.  I couldn’t eat (Well, I have a liquid diet.  I swear I will never eat Jello or plain broth ever again) and was receiving fluids and vitamins via IV.  Options had run out and surgery was the only was I was going to get out of the hospital again (or be able to care for myself unassisted – I was extremely weak).  I was told surgery would be done the next day and I could get the j-pouch surgery in 2 to 6 months.  I consented, though in reality there was no other option.  Every morning I would fast and then someone would come in to tell me that my surgery was cancelled for the day.  This happened for a few days when finally a definite surgery date was set for 9 days after the original date.

The night before my surgery, my bowel perforated.  Because of this, my surgery could not be performed laproscopically (I had the old-fashioned cut right down my abdomen).  My abdomen was basically contaminated and my lungs got infected.  I developed Acute Respiratory Distress Syndrome and was on and off life support for the next couple of weeks.  The incision was infected and had to be reopened to be cleaned. The doctor’s gave me a 50/50 chance of surviving.  I thankfully don’t remember the 10 days following surgery.  I remember going into surgery and I remember waking up with a tube down my throat which was doing my breathing for me.  I weighed 93lbs (I was a healthy 130lbs previously) and I couldn’t walk on my own.  A tube inserted through my nose was feeding me. I couldn’t even shift myself up in bed (the nurses would slide me around by my sheet).  My lungs had little holes in them from the life support machine and air was leaking out in my chest and neck.  My lungs collapsed a few times.  The most painful part was the chest tube which was inserted (4 times!) to drain the air and fluid.

Finally, finally, finally I was sent home after 2 full months in the hospital.  Recovery was surprisingly rapid in the first little while.  I went from using a walker to get around and not being able to get up off the couch unassisted to driving within a month.  The progress seemed to plateau at that point, as I was functional, but very tired.  I am still very tired (I’ve started working but only part-time and I am still on medical leave from school). My partner continues to remind me that I’m not feeling any less tired but I’m doing much more.

As stressful as all the sounds, it really is a worst-case scenario for most people and less than 3 months later I’m doing pretty well! It is sometimes frustrating to not feel normal, but given how I felt a couple of months ago (or in the days prior to surgery) this isn’t so bad! I’m adjusting to life with an ileostomy and I have a consultation to determine when the second surgery will be on October 16th. It is unlikely that it will be any time soon (probably in the spring) but the healthier you are going into it, the better the recovery. A few extra months with my friend (Lil’ Stomy, I like to call him. I think it’s normal to anthropomorphize your stoma. It doesn’t really feel part of my body. More like an extra appendage that needs attending to. Or a pet.) is worth improving the next surgery and recovery period.

If anyone would like to get in touch with me, please feel free to email me at jenellepower@gmail.com

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13 Responses to “Photos: Jenelle”

  1. kathy said

    Wow Jenelle – you sort of did it the hard way, didn’t you? I’m so glad you’re doing so much better. I agree with you about this site – Mark and Megan are pretty amazing people.

    kathy

  2. Kristen said

    Hey Jenelle,

    I love your blog . . . got to get my own started soon — I’m scheduled for surgery next Friday and I’m getting pretty nervous about going in again, especially since the last time was so stressful and scary (you win the scary colectomy award though!).

    I hope we can meet up before my surgery. If not, you’ll have to come visit me while I’m recovering.

    Kristen

  3. jenellepower said

    Hi Kathy,

    Thanks for the nice comment (my first blog comment ever!). It certainly wasn’t the most straight forward route, but I am feeling better, slowly but surely.

    Jenelle

  4. jenellepower said

    Hi Kristen,

    I’m sure that anxiety must be rampant. I sent you an email about getting together; chatting before you leave would be great.

    Can’t wait to read what you have to write!

    Jenelle

  5. I’m pretty calm about the whole thing, as if getting upset would change anything. I try to save any energy for really seroius things, you know, husbands who do the opposite of what you want. My surgery hasn’t been set yet, tho I’d like to get it over with as soon as possible, after all, Christmas is coming. I’m thinking about suggesting that they also do a tummy tuck while in there, a twofer if you will. This is a great site. My Mum had colon cancer and had her colon removed, oc course, this was back in the early ’90’s and I’m sure things have changed.

  6. ucvlog said

    Hey, I’m glad things are working out. I recently had a first surgery and a second surgery to remove my colon and construct a new j-pouch. One more surgery to go in December and hopefully life will go back to normal. Ulcerative colitis is a tough thing but thankfully it can be beat.

    Check out my new site at UCVlog.com. Similar material, but presented in video format. Take care.

    Dennis

  7. Jenelle said

    Hey Dennis,

    Thanks for the message. Your site is neat – the videos are an interesting way to tell your story. I really have to get on getting some more pictures up to personalize mine, although I look pretty different and am a little camera shy right now. I’m jealous you are getting your surgery so soon! I don’t think I’ll be getting mine before the spring, although the date has yet to be set. Seems like the surgeries happen in much closer succession in the USA.

    Anyway, good luck with your surgery and the site. I’ll be sure to follow for future posts.

    Jenelle

  8. stephlws said

    I agree with Kristen that you definitely win the scary colectomy award, but after so many trials and tribulations, it looks like you are finally improving. Welcome to the club! No more UC!!!!! We’re certainly happy to have you and as someone recovering myself, we just take it one day at a time, girl! Woo! Glad you’re getting better!
    It certainly takes strength to tell your story, to relive in your mind what you felt, experienced, etc. Way to go! Kudos!
    Take care of yourself and “Lil Stomy” he he!

    All the best,
    Stephanie

  9. jenellepower said

    Hi Stephanie,

    Yes, I’m seeing the light at the other end right now! Thanks for the enthusiastic message, it made it smile.

    Jenelle

  10. gknafelc said

    I agree with your statement that the stoma feels like more of pet! I actually named mine Rover!
    Gil

  11. Yves & Nathalie said

    Thank you for chearing your story!
    I was so sad to read how you had to go through…I’m glad you feeling better!

    My partner, my love..my…like you I don’t know what would be the best word after 15 years!!! lolll! So…my partner had his first surgery on september 17th because like you nothing works even Remicade and like you he wouldn’t stop working. He’s a firefighter and I can’t tell you how worry I was seeing him going to work after a crazy night going to the bathroom!!! He gains back 25 pounds and still eating! I think that’s because he know that he will have to be cautious soon cause he will have the jpouch surgery on the 20th of january.
    Did you had yours?
    Tell me the best way I can take care of him…

    thank you!
    Take care!

    Nathalie

    from Québec…so that’s why my english writing is not so good…sorry!!!

  12. John said

    Hi my name is John and I was diagnosed back in April of this year with moderate UC. I was put on asacol hd, and the doctor suggested that I do a short prednisone regiment to get me into remission, I declined the pred and the asacol did the job by its self. Now five months later I am having very small signs of a flare again and I was just wondering when you said you had regular flares a little extra medication would get things back to normal, what the extra meds were?

  13. Geoff said

    just read your story l had my op in January doing ok and hoping to have j pouch soon think you had a bad time
    regards Geoff

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