I suck at being sick

by on Sunday, September 12, 2010 7:03
This entry is filed under: Medication

Omg you guys, I’m dying. Ok I’m not dying its a tad dramatic but I’m not recovery very gracefully. First of all, you should go read about my disaster of a surgery #2. Long story short….I didn’t get it, what I did get was the 6-8 weeks of recovery. Awesome. Also what i have gotten in the last day is CRAZY back pain, and also narcotics withdrawal. Yea.  So lets talk about that. I seriously felt like I was in the Basket Ball Diaries last night. Ok that was dramatic. But I was a mess of excessive burning up and freezing cold at the same time. How is that even possible. I had uncontrollable arm spasms, and crazy insomnia. Dude I even chugged some cough syrup to try to catch some Zzzs but it didn’t happen. Withdrawal trumps NyQuil?  I have been chowin down my pain pills like woa because this one has been super sucky in the pain department.  Normally as the pain subsides I taper my own pain pills, this time all of a sudden yesterday morning I work up and it just stopped. Like amazing. So like a moron, I didn’t think and just went on with my day….no pills. Jesus did I pay for it. Last night was easily one of the worse nights of my life…Has anyone else done this? Or am I the only sucky drug addict?

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28 Responses to “I suck at being sick”

  1. avatar

    Lizz says:

    September 12th, 2010 at 1:00 pm

    Girl I am soooo sorry to hear this. I read your other blog. This just sucks. I know it’s so depressing and frustrating when you can’t live a “normal” life because you are too busy being a sick person. It’s unfair and I feel that way a lot myself. I had always been really stoic about all this-being bigger than it, not letting it defeat me, ie, denial, but after my pouch twisted the second time and I had it “untwisted” by my surgeon’s fellows, no drugs, nothin. THEN had numbing stuff injected into my anus (oooouch) wide awake. Yeah, all the emotions finally came pouring out. I just sat on this table sobbing as hard as I’ve ever sobbed, shaking, hyperventilating. It was as much from the embarrassment and pain as it was from the sober realization that this was my life. It was a vivid moment for me. The twisting was such a freak thing. It made me feel like it was just my lot in life to have horrible things happen to my body that I had no control over.
    It still sucks, just because I seldom feel like myself. I’m a very energetic, fun, quick, witty person when my body cooperates with me, but that doesn’t happen that much anymore. And I hate it. It gets really annoying watching all these “inspiring” you-can-do-it movies, because I used to think that way. I used to have dreams and was the most ambitious person I knew. However, an autoimmune disease is something you only have so much control over, and like you, I realize that I have increasingly less and less. It sucks that I really do feel defeated by my body’s lack of cooperation. I am literally too busy being sick and tired and going to the doctor for one thing or another to hold down a job, keep plans with friends, you name it. However. I do get to do some stuff AND it “could always be worse.” But it sucks. I always try to focus on the good. What this has taught me, how it has shaped and matured me, but nobody likes being sick. Nobody likes feeling helpless, and especially, not feeling like they have the ability to be who they are. The things that give me hope are doing work for CCFA when I can and when I do have those random “good day” to just live the hell out of life! Dunno if you subscribe to this, but I will be praying for you-sending up and out good Jackie-get-better vibes. Stay strong, sister :*

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  2. avatar

    Eric says:

    September 12th, 2010 at 9:48 pm

    I tried narcotics after a surgery once and they slowed my innards way down. So much that it ended in projectile vomiting. Since then, and for the last 3 surgeries, I only requested ibuprofen. Everyone thought I was tough. In reality, I couldn’t handle the effects of stronger pain meds. Hang in there!

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    Eric Reply:

    Oh, and P.S. I’m on an anti-anxiety med leftover from when I used to psych myself out from this disease and make it worse by thinking about it. I often forget to take it and go into withdrawal. It’s not a nice experience; not the same as yours but just wanted to say, hey, “drugs” are a part of this disease.

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  3. avatar

    Lizz says:

    September 13th, 2010 at 11:11 am

    I agree with Eric. Drugs are part of it. I have a drawer in our kitchen devoted to my “collection” of pills-most of which I take on a daily basis.

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  4. avatar

    Jackie Z. says:

    September 13th, 2010 at 5:48 pm

    I totally have a mad drug store too. I’ve saved everything, just in case, and so when I’m done with all of this I can take a picture of it all together as a reminder of how much it all sucked, and how, hopefully, someday I will be done with it. Though that seems like forever away. Hey lizz, are you a gmail person? Are you ever on gchat? I’d like to chat with you, if you are.

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    Lizz Reply:

    Yes, ma’am! I too would like this! lizdavis83@gmail.com

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  5. avatar

    Sara says:

    September 15th, 2010 at 5:44 pm

    Yeah, yuck, Iv done th whole withdrawal thing too and it really is horrible. I called my doctor and was like what’s wrong with me????? He ended up giving me some Ambion. It worked like a charm!

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  6. avatar

    Todd says:

    October 12th, 2010 at 8:05 am

    Hi Jackie
    I just found this website. My daughter Isabelle was actually at Camp Oasis during the summer; perhaps you ran into her. She is 7 and has UC. The week after camp she had a horrible flare up and was hospitalized for 2 weeks. She is still on steroids, and we did the calculation and she has been on steroids for something like 4-5 months out of the past 12 months. As the steroids are tapered, the symptoms seem to come right back. Anyway, we are meeting with a surgeon for the first time shortly. We will obviously get a lot of info from the surgeon and the pediatric gastro, but we are definitely looking for some more first-hand info from people (particularlu children/parents of young children) who have also had to decide on surgery/no surgery. It seems like surgery “should” greatly improve the quality of life and the quality of these crucial “growth” years. But I also feel like we would be trading awat the possibility that a treatment develops down the road that would help my daughter without having to give up her colon. Your thoughts on this would be appreciated. Thanks very much.

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    Jackie Z. Reply:

    Hi Todd,
    Sorry its been a few days since I’ve checked this feed. Ok here is what I think about your daughter…how sick is she, seriously? Is it changing her life, limiting her friends, her school, all of that stuff? How emotionally strong/weak is she? Kids are resilient but they are also still kids. If a surgeon says your kid should have the surgery, he/she is probably right. Next question is where are you going to take her for surgery? Also so far, even though I have had MANY set backs, surgery has greatly improved my life. HUGE. I had a leak with my ostomy yesterday…and that sucks…and i was mad…but I had that leak in DC visiting friends. A place I would never have been able to visit if I still had that stupid colon. Heres the dish I really want to talk to you much more about this. Please email me. Jackie Zimmerman {at} gmail {dot} com. No spaces.

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    Bob Reply:

    Jackie,
    Have you had your final surgery yet? Just reading your blog today because it looks like I will be having my takedown surgery in October. My story is a bit different then yours. I was diagnosed with U.C. In march of 2010 after a week stay in hospital. I had been bleeding long before that time, but chose to ignore stand hope it would get better on it’s own. No luck with that!! Fast forward to Jan 2011, was hospitalized for 8 weeks before they decided that the only corrective course was colon removal. The bad part was i was so weak from being on my back for 8 weeks, that they told me I was not a candidate for pouch construction during colon removal. After another 3 weeks i was finally released and went home to recover. 
    In the surgery process they left approx. 20 cm of my rectum in-tact and that section is now infected with UC. (have pain and bleeding)  There treating me now with steroid enemas and mesalamine suppositories. They have said if bleeding does not get under control surgery will come sooner then later.
    I truly am afraid of the takedown surgery, in regards to pain but more importantly worried that this will not work. Please tell me how your doing and if the surgery was worth it?

    Bob h.
    Parklandtrans@aol.com

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    Jackie Z. Reply:

    Hey Bob,
    From what I gather people who have 2 and 3 step surgeries have different experiences in their take down surgeries. I actually had a 4 step…which sucked…but here is what happened for me. My takedown was a piece of cake. Honestly day of surgery I was walking around and talking. I was in the hospital for 5 days, and left not being on any pain meds. Since then, it has been trial and error but honestly….pretty fantastic. Easiest surgery so far for me. Least amount of pain, and least amount of things to get used to. My pouch has worked great so far, and hasn’t caused me any problems! Granted…everyone has different experiences, and I was crazy nervous before my surgery, but since then…I’ve been so good and SO GLAD that I did it. Honestly, what do you have to lose at this point?! 

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    ToddS Reply:

    Hi. My 8 year old daughter had her takedown a few weeks ago. She was fine at home for about a week, but has been having trouble keeping food and drink down since then. Was rehospitalized for a few days, but they could not definitively say whether it was adhesions, and she has thrown up a few times since then. No total blockage, as she can still go to the bathroom, and she has not really complained of pain, which seems to usually go along with adhesions. Her vomiting is a little odd; just a very calm and and smooth regurgitation, as if food is sort of bouncing off a trampoline down inside somewhere. Anyone have experience/thoughts on this? Just trying to understand how much and when to freak out, and hopefully avoid hospitalizations when possible. Thanks very much.

  7. avatar

    Chris ( cmd@kcmo.net ) says:

    October 12th, 2010 at 11:15 pm

    Ouch, so sorry; please hang in there, all of you/us. I do believe the good times during this gift of life are worth struggling through our bad times. Had J-pouch surgery (due to IBD/UC) part one in June, having part two (last one) Wednesday morning, 13 October 2010. Think positive thoughts for me… I too went through minor pain pill withdrawals (Hydrocodone) after the first surgery, very annoying symptoms as you described; I finally figured it out, then tapered off over a few weeks. Looking forward to recovering and doing great things with my next chapter of life.

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    Jackie Z. Reply:

    Hey Chris, Its always nice to see others who have had the same snafus. Ugh. It sucked but luckily I got over it. I totally missed this post but I REALLY hope your surgery went well. Please post and keep me updated.

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    Chris ( cmd@kcmo.net ) Reply:

    The surgery went great, and I’m feeling great. I have some more healing to do but I am absolutely amazed at the results. Ulcerative Colitis disease free and looking forward to living life to the fullest again…

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    Rachel Reply:

    Hi Chris, my husband is getting ready to have his reversal surgery done on January 13th. I saw you had your surgery on Oct. 13th which is when my husband had his first.  I also saw that you were feeling “great” by Nov. 5th. . . that sounds promising.  We are just praying that everything goes well, but still just curious as to what to expect after the 2nd surgery.  We have talked to the Dr., but it would be nice to hear from someone who has actually been through the same thing.  Anything you would like to share would be much appreciated.  Thank you!

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    Chris ( cmd@kcmo.net ) Reply:

    Part 2 of 3:

    Within just a few days I was eating normal foods and using the bathroom almost normal again. I was still concerned that I could have an obstruction (intestinal blockage) if I wasn’t careful with what I ate, but so far I have eaten just about anything imaginable without any problems at all… though it’s always best to be slow with introducing different types of roughage. The only that I’m annoyed by today (10 weeks later) is occasional skin irritation simply due to using the restroom anywhere from four to six times per day: get the most incredibly soft toilet paper that you can find, as your husband will learn very quickly to minimize his recurring usage of anything else; have some disposable wet wipes (baby wipes), as sometimes those are appreciated after so many visits to the toilet per day; and, just in case have some skin ointment handy, such as is used for diaper rash. At first I was using the ointments quite a bit, but lately it just doesn’t seem necessary, though if he uses rough toilet paper too frequently then he’ll be needing some pain relief via an ointment.

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    Chris ( cmd@kcmo.net ) Reply:

    Part 3 of 3:

    Everyone else who went through the two-step J-pouch surgery told me that the second surgery was a breeze and they were absolutely right. One can’t account for the rare complications which can occur in life, so who really knows what could happen, but odds are your husband will be surprised and amazed at the results after the second surgery. As with all matters of this nature, some patience and diligence will be required as he adjusts to the resulting changes. Ultimately, though, as others have also said, I agree: the trauma of going through both surgeries (and subsequent recoveries) have totally been worth it. I am disease free and my remaining “annoyances” are nothing really by comparison to living with recurring U.C. flare-ups.

    Feel free to send e-mail to be directly, we can exchange e-mail or even telephone numbers if you or he would like to speak further. Here’s wishing you all well.

    Chris

    cmd@kcmo.net
    ( cmd at kcmo dot net )

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    Chris ( cmd@kcmo.net ) Reply:

    Rachel,

    Part 1 of 3:

    Over the last few months I’ve posted numerous surgery updates on the “Ulcerative_Colitis” Yahoo group. If you are subscribed to the group, have a look at message number 18400 (which contains links three separate message posts).

    If those are not accessible for some reason then let me know and I’ll figure out a way to get those commentaries to you. Basically, though, the second surgery was very easy compared with the first surgery, in terms of both in-hospital and at-home recoveries. I was still in the hospital for close to a week, and the main thing on my mind with the second surgery was (a) being able to take a shower finally and (b) getting out of the hospital. With the first surgery I had an NG (nasal gastric) tube in my nose and down my stomach, and a urinary catheter, but upon awakening from my second surgery I was pleasantly surprised to find that I had neither of those tubes in me.

  8. avatar

    Chris ( cmd@kcmo.net ) says:

    December 30th, 2010 at 12:50 am

    Part 3 of 3:

    Everyone else who went through the two-step J-pouch surgery told me that the second surgery was a breeze, and they were absolutely right. One can’t account for the rare complications which can occur in life, so who really knows what could happen, but odds are your husband will be surprised and amazed at the results after the second surgery. As with all matters of this nature, some patience and diligence will be required as he adjusts to the resulting changes. Ultimately, though, as others have also said, I agree: the trauma of going through both surgeries (and subsequent recoveries) have totally been worth it. I am disease free and my remaining “annoyances” are nothing really by comparison to living with recurring U.C. flare-ups.

    Feel free to send e-mail to be directly, we can exchange e-mail or even telephone numbers if you or he would like to speak further. Here’s wishing you all well.

    Chris

    cmd@kcmo.net
    ( cmd at kcmo dot net )

    [Reply]

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    Rachel Reply:

    Hello Chris!  I want to thank you for responding to my message a couple weeks ago.  You really relieved some serious worries I and my husband had about this 2nd surgery.  It seems like there are a lot of horror stories out there (which none of those stories have been told to us from my husband’s dr.), so it was nice to hear that your recovery, etc. went so well.  My husband had his surgery today and he is doing well so far.  He is in quite a bit of pain, but he is in great spirits.  He did already get up and urinate a little.  Tomorrow his Dr. said he will be able to start clear liquids.  Just curious how long it takes (i know everyone is different, but roughly) before he will have a bowel movement?  I feel like I made a mistake tonight at the hospital by going to a msg board and reading more posts about what to expect after ileostomy reversal surgery.  There were some good stories, but a lot about how some people were basically consumed with the diarrhea and being in the bathroom (not being able to eat or work) all the time.  My husband is such a positive person and I am the worrier, but he says he doesn’t care how often he is in the bathroom as long as he doesn’t have the ileostomy bag again.  I really just wanted to thank you and apologize for how long it took me to get back to you.  I also wanted to let you know that I do not have a yahoo account to access the previous posts you have already made.  If you would like my email address to send me any more information, it is schnell@fuse.net.  Any more information you would like to share would be fantastic.  

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    Chris ( cmd@kcmo.net ) Reply:

    Here’s an export of those Yahoo message posts placed on another web-site that does not require an account or a password: http://cmd.kcmo.net/2011mjfn0114kjzm0408pqwk/

    He will probably have his first BM around the second or third day. The number of visits needed per day will change in the weeks and months to follow, and will eventually be determined (in part) by what he eats. As I mentioned before, make sure you stock up on super-dooper soft toilet paper, maybe Angel Ultra Soft or something like that, as well as baby wipes and diaper cream, just in case; because he will be using the toilet more often than “normal people” he might have the urge to clean himself more thoroughly. He may not find it necessary to use ointments, but they’re good to have on-hand just in case. I will copy this message to you via e-mail as well, just to ensure that you receive it.

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  9. avatar

    Chris ( cmd@kcmo.net ) says:

    December 30th, 2010 at 12:54 am

    I apologize for the duplicate and out-of-order posts… this message board kept rejecting my posts for some reason, so I kept trying different combinations. It looks like the problem was my earlier attempt to reference an HTTP web-site address as part of the message. Perhaps a forum moderator or administrator can delete the duplicate (or all of it) and I could just try reposting again from the beginning. Sorry!

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  10. avatar

    Lizziesmom says:

    June 6th, 2011 at 9:37 pm

    Nupercainal butt cream. You can get it at walgreens near the hemorrhoid creams. It numbs things up and I can’t live without it!

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