What Next…

by on Thursday, April 8, 2010 11:50
This entry is filed under: Coping/Support

Hi, all! Well, I have a bit of a mixed bag here today news wise. Here are my updates. Got a decent severance package from the firm that “fired me” because I missed so many days when I was sick. However, they still keep calling me to ask for help…Hmmm…Went to see the new surgeon yesterday and he was good-seemed very knowledgeable. He scoped me in the office just to get a look at what was going on with my J-pouch. When I told my best friend this (who is a doctor) she said, “Did they give you any sedation or anything?” I replied “No…” Her next question, “Did it hurt?” Me: “Um, not really. I mean, it didn’t feel good, it felt weird and was uncomfortable, but I’m so used to it, I guess I don’t think much about it.” Let’s face it, after IBD you get so used to things going up your ass you just look away and go to your “happy place.” *Think about the beach…um…puppies…” Anyway, good thing he scoped me because although the pouch “looked good” he saw some “white stuff” in there. I did have the barium study about a month ago. When he was “lookin’ in there” he said, “It shouldn’t be barium, that was back in March, that should be long gone.” So…his hypothesis-I have developed a sinus tract/cavity on my J-pouch which is collecting mucus or infection. He ordered a CT scan to see what’s happening. Hopefully this is not the case, because sinus cavity on your anal parts=more surgery for Lizzy. Lizzy does not want more surgery, guys! Lizzy has had ENOUGH surgeries for the first 27 years of her life. (Did I mention today is my birthday??!)
In other developments, my right thumb is really swollen and I can’t bend it. This is making cooking and picking things up hard. Man, that opposable thumb is something we really take for granted! Anywho, went to the doc (again) today and he thinks it is just IBD-related arthritis. I have had enough of these “Ritis” brothers. Col-itis, Arther-itis. The Itis family sucks! Anyway, I’ve had it for years, but my joints have never been swollen and unmovable before. It’s kind of a pain in the ass.
Anyway, I am feeling better overall thanks to some Augmentin I’m taking for a (nasal) sinus infection. Keep your fingers crossed for me that the “white stuff” in my ass-region doesn’t require force-able removal.
However, if it does, I’ve decided that THIS IS IT! I’ve had it with this surgery, being sick crap. No, I know I can’t do TOO much about it, but I guess I’m just sick of fighting it. I never wanted to give into this, but with all the truly bizarre-o stuff that’s happened to me (J-Pouch twisting twice requiring surgery), multiple other complications including Crohn’s and strictures (requiring more surgery), I’m truly fed up. I still feel better than I did before the J-pouch surgeries-no comparison, but I’m tired of being “fixed” all the time. I’m 27, I just want to be a healthy “normal” under 30 young person and wear bikinis at the beach (not an ileostomy bag), be able to open doors with my dominant, right hand. I am just tireddd, ya’ll. I need a break and I’m afraid I’m never going to get it. I have always tried to have (and for the most part have succeeded) a positive attitude, but given my past medical history, my optimism is starting to feel more like denial. I think the reality is that I’m sick, weird shit happens to me (even my doctors joke about this), and that it’s not going away anytime soon. I think I’m going to bite the bullet and file for disability. My COBRA runs out in 18 months, and if I stay on schedule I’m going to need another surgery in another couple of years. My future husband’s insurance is a whopping $500 a month to put me on, and with unemployment running out soon after that I don’t think we can swing that. I’ve also got the “pre-existing condition(s)” going on and although I’d love to work, I just don’t think I can be a reliable employee with all my doctor’s visits and random health problems. So, I have to come up with a plan for the future that will allow me to rest and go to the doc when I need to, give me time off for surgeries should I need them, recovery time, lengthy sick leave when necessary, and health insurance. I’d love to work when I’m able, and I know that with disability you can work some. It is an option I’ve avoided for years despite the suggestions from friends and family, but reality is setting in.
Anyway, that’s the update. I’m off to have a lovely birthday dinner with my fiance and enjoy the rest of my day.
Stay well!

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10 Responses to “What Next…”

  1. avatar

    Brevin says:

    April 9th, 2010 at 9:06 pm

    Happy Birthday-itis!

    [Reply]

  2. avatar

    Jessica says:

    April 12th, 2010 at 3:46 pm

    Lizz, I know just how you are feeling!! I am just a year younger than you, and know what it feels like to just want to be “normal”. I battled severe UC for over 6 years, and just this past Sept started the series long 3 surgeries to get to the end with a j-pouch. I am having more than normal problems with my Loop-End stoma right now, and my surgeon told me he would up my last surgery up by a month. Cant wait to be ileostomy free!! How far along are you in the surgeries? I am very nervous about this last one and am trying to gather info bout what to expect. Will be thinking of you. Stay strong!! :)
    Jessica

    [Reply]

    avatar

    Lizz Reply:

    Hey, girl! I am actually through the surgeries. I had my take down 4 years ago. My surgeons and doctors have brought up the topic of ‘pouch removal’ a few times when hearkened me back to the bag days I mentioned in my post. I was diagnosed with Crohn’s shortly after takedown surgery. I’m feeling better since starting some antibiotics and am having a CT scan Wednesday to find out what is going on with my Jpouch. Hopefully it’s nothing! Good luck with your surgeries. I know that ileo is no fun!

    [Reply]

    avatar

    Jessica Reply:

    So sorry for the misunderstanding! And sorry to here about your Crohns diagnosis. My doctor had me tested 3 times for Crohns because he was so sure that I had it. All the tests came back negative thankfully! Hope for your sake as well that the texts come back with nothing wrong with your j-pouch. I promise to read more carefully :) Thx! Jessica

    [Reply]

  3. avatar

    Daniel says:

    April 16th, 2010 at 3:47 am

    I have my takedown in a few hours.

    I am sorry the doctor mis-diagnosed you with UC. I was diagnosed with Chrone’s for the first 5 years pre-surgery, but my test came back as UC a few months before the surgery. Fishy??? I had never been tested before, it was an assumption based on family history. Stories like yours make me worry that the doctor’s could be wrong in changing their assessment.

    Stay strong, we are never given more than we can handle. We’re not dying, it just feels like it some days.

    As for going back to this bag…no thanks. I know we may not have a choice, and it is better than UC, but I have hated the last 3 months. My only justification was the surgery pending. My insurance covers well enough, but they only provide 10 bags/month, which I would assume is average. These bags do not last 3-4 days very well ime. I never felt comfortable running or playing basketball with them. And, I have a beautiful wife…I want my body back, selfishly.

    Most of the stories on this blog have happy endings following many struggles. The struggles are never enjoyable, but if they are leading toward a happier ending, I’ll fight through it. Fortunately, our attitude is the only thing we can control through this seemingly uncontrollable process.

    [Reply]

    avatar

    Lizz Reply:

    Daniel,

    I’m sure you’ll do fine! I’m a “weird case” as admitted by my doctors and surgeons. Normal things just don’t happen to me! They are still rationalizing whether or not I have Crohn’s. My top-of-the-line Vanderbilt GI is sure of it-recent ones out here in Oregon are reevaluating me. I decided I don’t care what it is as long as it’s treatable and I feel good! Right now I feel good. I seem to be fine as long as I take antibiotics, Humira, and Canasa suppositories. I was doing amazingly well before I stopped taking antibiotics in December last year. CT results today-keeping my fingers crossed for non-bizarre-o complications! I hear ya on the bag though-I know it’s vain and maybe a little childish, but I like my hot bagless body, and my fiance does too. He and I met soon after my takedown and I know he would think I’m as beautiful as he does now, but I wouldn’t. Aside from that, it’s a pain in the ass (ha) to take care of. I, like you, felt like I was so focused on knowing I wouldn’t have to have it in a few months, that’s what got me through it. I am excited for your takedown! You need to remember to give your pouch time to adjust-at first it will be hard. I still love my J-pouch and am going to hang on to it for dear life!

    [Reply]

  4. avatar

    Beatriz says:

    April 16th, 2010 at 10:58 pm

    Hi Lizz! I was supposed to have j pouch and rectal removal surgery three days ago. However it was stopped bc the surgeon found a fistula. He thinks I am in the 20-30 percentile grp where they can’t figure out if I have uc or cd… He thinks I have crohns and doesn’t want to proceed with the j pouch surgery. I js can’t believe it bc I felt healthly for past 7 months with my temp ileostomy. I am soooo ready for the j pouch and beach body ready for this summer… Is there a specific test to know if for sure u have crohns? He has asked me to get a second opinion… Which I am! I js feel like no surgeon in Houston will do the j pouch surgery on me now. I hope you feel better and chin up always! You seem like a strong chic! If you time I would love some advice. Thx! B

    [Reply]

    avatar

    Lizz Reply:

    Welllll, I’m not sure how helpful my advice will be. The “best” test aside from a biopsy is the Prometheus blood test. However, this is not 100%, as no test is. I had tons of tests before the surgery to confirm that I did not have Crohn’s, and was always textbook UC. It was decided that I had Crohn’s after the pouch surgery when I had a bad stricture and inflammation and ulcers above the pouch that did not respond to antibiotic therapy=not pouchitis. However, some docs here are evaluating me again because they are perplexed that my Prometheus results lean towards UC. I think they just determine one or the other based on your clinical history if your tests don’t line up with the evidence. They are similar and confusing diseases, even to the experts. I would get a second opinion, especially since your doctor suggested it. Good luck, girl. I know the bag is not fun, but the important thing is to get you in better health ASAP before you consider your surgical future.
    Good luck.

    [Reply]

  5. avatar

    Bruce says:

    May 19th, 2010 at 7:11 am

    I have my takedown in a few hours.

    I am sorry the doctor mis-diagnosed you with UC. I was diagnosed with Chrone’s for the first 5 years pre-surgery, but my test came back as UC a few months before the surgery. Fishy??? I had never been tested before, it was an assumption based on family history. Stories like yours make me worry that the doctor’s could be wrong in changing their assessment.

    Stay strong, we are never given more than we can handle. We’re not dying, it just feels like it some days.

    As for going back to this bag…no thanks. I know we may not have a choice, and it is better than UC, but I have hated the last 3 months. My only justification was the surgery pending. My insurance covers well enough, but they only provide 10 bags/month, which I would assume is average. These bags do not last 3-4 days very well ime. I never felt comfortable running or playing basketball with them. And, I have a beautiful wife…I want my body back, selfishly.

    Most of the stories on this blog have happy endings following many struggles. The struggles are never enjoyable, but if they are leading toward a happier ending, I’ll fight through it. Fortunately, our attitude is the only thing we can control through this seemingly uncontrollable process.

    [Reply]

  6. avatar

    Jessica says:

    May 19th, 2010 at 11:37 am

    I had my take-down surgery one week ago on Wednesday, the 12th. I just came home from the hospital yesturday, and even then my doctor was stretching it by letting me come home. Thursday, the day after my surgery, I could not stomach drink ing water. When I did try, I trew it right back up (and we all know how it feels to throw up after surgery)! Things got a little better on Friday when I worked all day to drink 1 juice, but I did, and I kept it down. Saturday, I was able to drink a little more and eat some good vegetable broth from Whole Foods. Sunday seemed to be going even better when I ate a yogurt and kept it down just fine. I will add though that in all this they still were giving me regular doses of anti-nausia due to how sick I had continued to feel, and it did help to keep the liquids down. Sunday night is when it hit me. I was sick all night, and began to run a low grade fever. All day Monday I was so sick, and on the verge of throwing up all day. With 4 doses of anti-nausia Thats all I could stomach all day was 1 glass of water. Thankfully Tuesday I was able to drink enough water to show my doctor I would be able to keep fluids down at home. So here it is a week after my surgery, and I am still not able to eat solid foods yet, and battling with the nausia. Thankfully I have 2 different meds for the anti-nausia, and hopefully it will be sooner rather than later that I will be able to start eating something. Has anyone else faced this bad of problem with being sick after the let down? Of what Ive read, so many of you are out of the hospital within 2-3 days.

    Can i ask one more thing? Since Sunday I have spent (litterally) about half of my time in the bathroom. I am having so many pains that feel so much like my UC and the urges. But then sitting on the toilet, I often can’t seem to empty my J-Pouch. Is this normal? And how long will this last? Last night I was up in the night 2 hours total on the toilet. :(

    Thx! Jessica

    [Reply]

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