Wednesday, September 23, 2009

When Pain Comes Back

There's a reason why I say my Crohn's Disease is like a ticking time bomb in my abdomen.

For many months I have been feeling nearly perfect. I was even starting to introduce foods I have not eaten for years- like grape jelly (joy!). I was regularly working out again. But the time bomb never goes away and 2 weeks ago I started getting pains again. Aching pain and tenderness with occasional stabs of pain during the day. At first I thought this was a direct result of stress + fatigue + a huge meal of Chinese food + a tenacious cold. But now, a couple weeks later most of those possible causes have been resolved and I'm left with no excuses.

I have an appointment with my GI scheduled in mid-October, but after a verbal flogging by my loving boyfriend and a reminder that I need to be a vigilant general overseeing my "troops" (you gotta love the dorky-sweet analogies of someone who loves you and is desperate to talk some sense into your stubborn brain any way he can), I called the GI today and got on the waiting list for a sooner appointment should someone cancel. BF was right of course... if it's bad enough that I'm in tears of fear about it- then I should darn well call the doctor and try to get in sooner.

Funny how you start to believe you are just fine and you've put this disease behind you... and then bam! The return of pains can reduce you to a terrified ball of misery. I should not have been blindsided by this. When I had my abscess surgery a year ago, the surgeon (a wonderful woman with a fantastic bedside manner), told me that my section of small intestine had major fibrosis (hardening of scar tissue) and would have to come out "sooner rather than later". My Mom and I had exchanged scared glances and asked what she meant by "sooner". She said something like "a year or so". At the time I sighed in relief that I was not getting a resection then and there, but my my my how fast a year goes by. I now wonder whether these pains are the harbingers of that fateful prediction the surgeon made. Am I headed down the road of a resection surgery?

I pray that option is not in my future, but since I can feel the 3-4 inches of hardened small intestine by lying on my back and feeling along the path of it - like a piece of garden hose in my abdomen - I will not be surprised if that's my only choice. It's just frightening.

Have any of you readers had a resection? How do you feel now?


  1. Hi BrightSide,
    It's been five months since my resection and although I have good and bad days, I can say I'm living again with Crohn's - not just dealing with it. Before I'd come home from work in pain and lay in bed for hours. I've been active and (mostly) pain free. When I spoke to the surgeon after my surgery he said there was no way we could of salvaged that foot of small intestine they removed, so I'm at peace with my decision. I understand your abdomen being a "ticking time bomb" - every cramp makes me pause. But I'm at peace with my decision because I feel like myself again and I can enjoy life (and for me, there was no other option). I try to remember that not everyone (about half) of Crohn's patients don't need repeat surgeries. And I'm trying to live in the moment and enjoy what I have now, health-wise; I will never taking feel well for granted again. As awfully cheesy as this sounds, my heart goes out to you - mulling over surgery and the "what if's" and all the ramifications is more depressing than many people can realize. A big hug and all my best.

  2. Thanks Kathryn!

    Thankfully I'm not at the point yet where I have to make that decision... I just have it at the back of my mind, scared of it.

    I'm so glad you're feeling well after yours- that makes me less scared! :)

    ~Bright Side

  3. Hey honey I just saw your post. Have you made it to the doc yet? Let me know what's going on? I am happy I had my made me feel human again. I'm praying for you. Hang in there. I'm always here for you!!

  4. Well, I will find out today what my doc says about all this. My appointment is in about an hour. Thanks for the well wishes!

  5. I had my resection in December of last year. Mine was completely unexpected and pretty much hit me out of the blue. I had not been on any meds or worrying about anything I was eating or drinking, etc. until a few days before Thanksgiving I got an obstruction and then I guess I just burst lol (got a perforation that is)! Boy did it hurt. Thankfully I was already in the hospital when it happened. This involved removing 1.5 feet of small intestine and 1 foot of colon.

    I figured at some point it was probably inevitable and I don't really spaz out too much about what I eat, though I won't sit down and have a bowl of popcorn if it just doesn't seem like a good idea that day :)

    As for how I feel now, I still have those moments when I'm thinking uh-oh... I am going through one of them now in fact. So I rest up, do what I can and get on with it. I still don't worry too much about the eating and drinking and all that, that just adds stress and we all know what that does.

    My thinking about the whole food idea is if you can do it, do it. If you need a break take a break. I used to worry about everything I would eat and spent a lot of time in pain anyway, then I stoppped worrying and had absolutely no predictive signs leading up to my resection. It's kind of like smoking and cancer I think lol. Some will get it, others won't, but if you do get it you have to do the best you can. This is a completely oversimplified way of saying, don't worry about it and don't beat yourself up over it!

    If you have a choice of getting a resection I would take the choice and get it before it chooses you!

    I would do it again in a heart beat and I probably would have had to have had one anyway if I would have been doing what I should have been which was going to the doctor and paying attention. Who knows - all the nerve endings were probably eroded away and that may have been why I had no pain or anything before that - jk!

    Either way hope you feel better and let us know how it turns out.


  6. hi brightside -- hope the GI had good news for you. i haven't had a resection yet, but this current flare is under surveillance for candidacy and at the end of the month i'll be in the same position you were a few days ago :)

    eager for an update on your recovery and treatment. be well.

  7. Hi Brightside,
    I have had an emergency resection, in 2004. So did my mom, in 2006. I had 12 inches removed. Small scar, only about 4 inches long. Yah know, it is not too bad.

    A pain in the a** for about a month, but recovery is nothing unbelievable, you just chill out! It's ok if you have to do it, the only stipulation I was not crazy about is that once you have surgery, chances are you will have more surgery in the future...

    There are far worse surgeries to undergo, if you have to have this one, it's ok! You will be fine!

    I found it helped for a bit (the obstruction is gone, yay!) but symptoms came back and you know my story, haha.

    I'm sorry you are flaring, I hope you feel better!


  8. I had a resection in 2005 after fighting the doctors for 10 years. I felt the doctor couldn't convince me that surgery was my best option. I keep on saying that I only have certain length of intestines that has to last me my whole life, so for me surgery was last option.

    I did however wait too long & had emergency surgery since I was in some kind of denial stage. I think the problem for me was that I didn't trust my doctor & I didn't make up my mind for myself but waited for other people to tell me what to do.

    If I can do it over I would still have the surgery but rather find out more about my options instead of waiting/ignoring it and ending up with more traumatic experience.

    You are getting to know your body. Listen to it, take the advice you get with a pinch of salt & arm yourself with facts & options available.
    Here is a webcast with info that I think would have helped me with the decision of surgery.

    Surgery can give you a better life but ultimately it's a decision that you need to have peace about :)