The Gimpy Colon*

*No, it's not another trendy bar.

The Ham Sandwich…

on October 5, 2013

I put that title there because I wish I could have one.  But alas, nothing is going down properly except rice and mushy things, like… rice.

Lots of things came out of my last colonoscopy.   I got switched to Cimzia from Humira.  I was taken off Pentasa, and I got two referrals.  The first was to a surgeon at Penn State Hershey, and the other was to a Crohn’s specialist at the University of Pennsylvania.  I think this is a slick way of saying…  the Gimpy Colon baffles all….

I was happy about the surgeon referral which is a 180 from the attitude I had when I first diagnosed.   Crohn’s disease doesn’t just affect the digestive system.  It causes pain.  Lots of pain.  It different for different people.  All CD sufferers are different.  Mine is in the lower right side right around the appendix and it kind of curls around to my back.  My GI doctor described it best when he said it feels like a toothache.  Kind of a raw pain that’s not so debilitating that you need immediate medical attention, but bad enough to keep me from sleeping or walking, or wanting to leave the house.   So I take a lot of pain killers.  My favorite is Ultram, but I hear my liver is going to explode from taking too much of it.  Vicodin is my second favorite, but I can’t drive with Vicodin. That said, I’ve had enough with all of this and am willing to give surgery a go if that’s what everyone thinks I should do.  If it ceases my dependence on pain killers, even better.

Farmboy and I went up to visit the surgeon in Hershey the other day.  He was a nice enough guy… for a surgeon.  He said that since my terminal ileum is such a mess and it’s really just that area where most of my troubles are, that doing a ileocolectomy will be my best option.  We went over everything the surgery entails.  Recovery time, things like that.  The surgery is scheduled for a date in November so that I can still go to see the specialist in Philadelphia.  I’m pretty sure I’m still doing the surgery, but since the surgeon I’m using and the Philly specialist know each other, I can get a quick second opinion and also discuss with Philly guy what the best course of action will be after the surgery is over.

The surgery is scheduled the week before Thanksgiving week which doesn’t bother me at all.  What does bother me is that the boy has a big soccer tournament that Saturday, so I have approximately five days to recover enough to hobble onto a soccer field and sit myself down on one of those fold-a-chairs.  Of course, there’s a shot that I won’t even be released before that time, which means all of that fretting about making the soccer tournament is moot.  So it goes.

In a few weeks, my BFF, Butter (not her real name) and I will be taking a road trip (the first one we’ve taken in zillions of years) over to the city of brotherly love to meet with yet another member of my lucky, lucky medical team.  Because Butter and I rarely do anything that doesn’t end up in some kind of usually bizarre story, often but not always, involving potatoes… I’m sure I will have a tale to tell.

Stay tuned!

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4 responses to “The Ham Sandwich…

  1. dfish3 says:

    Hi there,

    I think I actually came across one of your posts recently on a Crohns forum. If not, your story is very similar. Anyway I was dx in Sept ’13 with Crohns and a large mass of inflammation in my terminal ileum (5cm). I was treated with prednisone, Flagyl & cipro for 3 months before the mass was small enough to start Humira. However, within a week I was back in the hospital showing the mass was back to 2cm. I met with a surgeon & my GI doc and we decided to stay on Humira but add back the antibiotics. I still felt crappy everyday, but was told the Humira would just take time to work. Within 4 weeks, I was in the hospital again and the mass was back to 5cm with a fistula to my ascending colon. Surgery was ordered for 2 days later, resulting in an ileocolectomy but luckily there was no need for an ileostomy – I did have to be opened up though nc the mass was too big to be taken laparoscopally (sp?). Recovery in the hospital was long and gruesome (ng tube, etc.), but 11 days after surgery I was discharged. Now it’s a week and a half since I got out and some days I’m ok, but others I’m miserable. The past two days I’ve been achy all over, sinus & ears clogged and low grade fever. Conveniently all after my surgeon follow up Monday. Now I’m up @ 2am, unable to sleep, and really hoping for some advice/encouragement. Also – what do you think about Humira? I had the two loading injections then one regular before the surgery. My GI doc said I’ll start back the beginning of Feb. Honestly, I never saw a benefit except for the initial loading dose. I just don’t know if I should ask about Remicade. Thanks for having your story out here – I’ve found this disease to be incredibly frustrating, confusing, & illogical, but reading stories of people going through it has helped tremendously. Thanks.

  2. gimpycolon says:

    dfish – Thanks so much for your comment! First of all, I apologize for not responding or even approving this comment until today.. I should go to blogger jail. As I probably made crystal clear in my last post, I did have surgery last November and I’ve had a really surprisingly easy recovery thus far. I haven’t written an entry about it, because truthfully, I forgot. I’m sorry you had such an awful time, but rest assured that thanks to the wonders of the internet, you are not alone!

    Ok so, Humira. Humira took away the joint pain I was experiencing from the Remicade (and by joint pain, I mean, hands curled up all arthritic like, moaning when I got up out of a chair or sat down, the useless feeling when just sitting on a chair was about all I could handle)… that sort of joint pain. It was by far the darkest days of my experience with Crohn’s disease. The funny thing is, it wasn’t even really classic Crohn’s symptoms, so that made it even worse. I wasn’t excited about moving from Remicade to Humira because Remicade was a more “fun” delivery system. I got to talk to nice nurses (I don’t get out much) and put my feet up and drink sodas and eat snacks. Humira was a home thing, so I didn’t get to get out. (I really don’t get out much)

    As for side effects of Humira, all I can say is that it made me tired. I just took the shot right before I went to bed and that cleared up. As for Humira helping? Not so much. At my last scope, my Crohn’s was worse than ever which made my GI send me to the surgeon. I’ve been in pretty good shape ever since (although I think my gallbladder is acting up, but that’s a whole nother story)

    Anyway, these days, I’m on Cimzia which is in the same class of drugs as Humira. Honestly I don’t know why they want to keep me on anything if I’m feeling ok, but such is life.

    Hang in there. I know it sucks, but I hope that after you are healed from the surgery, you’ll do a lot better!!!

  3. Sometimes I’m concerned that the origin of an auto-immune disorder is bacterial. An example would be Lyme disease. I come to this view by looking at the geographic distribution of MS (inflammation in the brain in those over 45) and the geographic distribution for known Lyme. Diagnostic would be a ‘Herx’ reaction in bowel impacted patients; ie. a ‘negative’ response shortly (or a week) after a strong antibiotic hit (say with Doxy). (Western Blot tests mean next to nothing regarding actual infection). What has happened after strong antibiotics?

    • gimpycolon says:

      Cary – I’ve only been on antibiotics a few times in conjunction with the Crohn’s disease. Once in the very beginning (did nothing) and lately because of the impending surgery (which I’ve already had). I wouldn’t call them super strong either. I’m not a fan of meds really since the one I’m on right now is really painful (Cimzia) and also since I’ve revamped my diet (basically gluten and dairy free) and have been having much success, pain-wise, doing so.

      I’ve read that the auto-immune response could stem from a lack of probiotics in the system. Which makes sense, I guess. But if you can’t tolerate dairy and there’s all sorts of dairy in probiotic yogurts and you can never be too sure about the pills and whether your body eats up the probiotic before it hits your intestines…. well it’s rough.

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