Crohn’s Disease Can Constantly Change Your Life
Posted by: James Lewitzke in How Awesome am I?, Lightning ShockSome of you may have noticed that I haven’t been online anywhere over the past two weeks or so. OK, I know, another excuse for not updating my site, but I think this one is a pretty good, as it takes a more personally tone.
WARNING: Some Graphic Pictures are ahead, view them at your own risk, if you can handle all the bodily gory type of stuff.
The Beginning
About 10 years ago I was diagnosed with Crohn’s Disease, which affects the digestive system, more specifically within the intestines. It’s not a fun disease to have, but it’s been manageable with daily tablets of Mercaptopur.
Yes, I have Crohn’s, it’s not transmittable to other people or anything, but it’s still a pretty major disease that affects my diet, my weight, and my energy levels.
More Recently
For the past month or so I started to notice frequent aches in my back that wouldn’t get better as time moved on. They started around the beginning of Summer Vacation, so I figured the pain was due to the immense amount of time I spent on my computer at home, or due to lack of exercise. This clearly wasn’t the case.
On Independence Day, July 4, the pain was so unbearable I was emitted to the emergency room. Let me just say here that Morphine is gooooood, very relaxing. The emergency staff couldn’t find anything wrong with me, so they sent me home with a Brett Favre Starter Kit (Vicadin). Luckily though, I already had a regularly scheduled Gastroenterology appointment coming up next week Wednesday, so my Doctor could help find out what was wrong with me.
That day was when he told me I wasn’t going anywhere. I was given a CAT scan, a large abnormal abscess around the size of a baseball was discovered eating away towards the end of my small intestine, I required emergency surgery. (An abscess is basically a globby pile of pus created by the Crohn’s Disease.) If the abscess were to have ruptured, I could have easily gone into shock and died.
The Surgery
The next day, Thursday, was when everything all went down. The surgeon was able to remove the abscess without rupturing it, along with about a foot of my small intestine.
Waking up in the recovery room was horrible though. It was the worst physical pain I had ever felt in my life. But overall, the surgery was successful.
The scars aren’t very pretty either. For one, I received an ileostomy and now have a stoma for excrementation. Basically, it means I have a hole in my belly for pooping from my small intestine:
A bag is placed over the hole so waste droppings can come out without me feeling a thing. The bag is usually emptied about three times a day, it still freaks me out. Luckily though, in my case, this sort of condition will 99% likely be reversible.
Also, here is the incision wound from removing the abscess, along with an ileostomy bag placed over my stoma:
It heals on it’s own, with the aide of a wound vacuum. They kept it open like this to drain the rest of the infection easier. There are also bandaging and foam inserts that must be changed three times a week. It hurts every time it gets changed. I don’t remember what day the photos were taken though, I think it was on the Sunday after surgery.
You wouldn’t believe how much that vac pack values in at.
$100? Nope.
$1000? Not even close.
$10,000? Keep going.
The system has a rough value of $25,000. Yeah, I know VERY expensive. My family’s not paying for it though, we’re only renting it for the duration of the healing process. And the insurance company is covering most of the costs.
The Aftermath
I spent the next week recovering from the intestinal surgery in a hospital bed until I was finally healthy enough to go home.
Obviously now I’m currently able to type and still use a computer while functioning properly, that started today. The wound should heal over a total of eight weeks and we’re still discussing with the doctor whether reattachment surgery is a possibility. Obviously this has indefinitely postponed my project, I’ll update in awhile, but I won’t be working on it for a long time.
This whole sidetrack also affected my school plans for the fall, which I’ll have to work on to see just when and how everything will work out.
I’m glad the GI doc was able to find the abcess when he did and get you into surgery quick enough. It sounds like you have a pretty rough couple of weeks but are on the up side now. I will keep you in my prayers
He was a great Suregon too, Kandi, his name was Dr. Regan. My GI Doc didn’t actually perform the surgery, he recommended the surgeon, and said Dr. Regan was one of the top 3 guys in the state (I think).
And thanks for the best wishes
Wow unlucky dude. I really hope that things get easier for you in the future. I’m glad you’ve got things sorted out so far and it’s diagnosed. Good luck and I look forward to your next blog post
Thanks Dan,
Actually right now I’m feeling 10X better than when I was in the hospital. It’s like I can feel myself healing, I didn’t think it would be going by this fast.
I feel very week while reading and seeing your pics… I have phobia with organ or blood related disease,glad I was able to read your blog out of curiosity.
I’m glad to know you’re feeling okay now.. I’m hoping for your steady recovery! Goodbless!:)
I know how gruesome those pictures look, that’s why I put the warning label at the top, as some may not have been able to handle it, I’m glad you were able to though.
And I appreciate the concern too, every day it’s going by faster and faster.
James … I’m so sorry! A close friend of the family struggled with Crohn’s for most of his life, so I can begin to imagine what you must have gone through. All I can say is how happy I am to hear that you’re on the mend.
It’s alright Forrest, thanks for the story. Hopefully your friend was able to deal with it pretty well also.
I just had a dressing change today with the wound vacuum and while the pain wasn’t as nearly as bad as it has first been. The most annoying part about it though is getting an absolutely tight seal. Today we had a little trouble with that. Even the smallest leak of air caused the machine to beep and cease, it took about half an hour or so to find and cover the small leakage in the tape surrounding the foam.
I’m just glad that part is over with for the next two days. I’ll have a check-up with the surgeon on Friday to find out how well progress has been coming along.
wow, sounds alot like what we are going through right now…. My son is 19… we are now on the 6th abscess eight weeks post surgery, he too has an ileostomy… although he has had that since he was 2.5 years of age…
would you be open to emailing us?
Things are going well, actually, I’ll be getting reattachment surgery a month from now.
If you have any more specific questions about what going on, you can still comment and reply on this post here, as I’ll be more prone to responding sooner.
However, if you wish to keep matters private, then feel free to email (as I mention on my feedback page).
i was diagnosed with crohns 2 years ago and i also had the surgery to removed an abscess which spanned from my groin to above my kidneys, i was fitted with an ileostomy 2 years ago after 3months in hospital, and have had the procedure reversed in june of 2008.
from looking at your photos, i can see you have the same incision as i do and once you have your ileostomy reversed will also have the same scars from the reversal. the reason i say this is because im a 18 year old girl, who is really affected by these scars, and was woundering if you would open to talk via email. i have never found anyone who has been through the same ordeal as we have, and i was hoping that it could help.
Many Thanks
Chelci
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