Crohn’s Disease Can Constantly Change Your Life
Posted by: James Lewitzke in 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
What do you wish to know?
Commenting here is easier, faster, and more efficient. However, if you must keep the talk private, just check out my feedback page for email instructions.
Hi Chelci…. I have been a crohns patient for about 18 years now.. I had a colostomy done in 1999 and then in 2000 had an ilieostomy.. then in 2004 I had my rectum removed because there was some slight crohns activity. So the decision was made to make the ilieostomy permanent. Actually that decision was made before the surgery. went into surgery with the option of reversing it if we could or removing it. Unfortunately the latter happened. But I had 5years to prepare for it
To tell you the whole story would take up more space here than I can type. However to say that I am in the 3% of patients that have the absolute worst case of crohns. If it can happen it has happened to me. I most recently had to a stomal hernia repair back in sept of ’08 and then again this past aug ’09.. The amount of scarring I have it really something to be scene.. LOL.. but I have learned over all these years that to keep my sense of humor is the biggest victory of all.. Not that it is easy all the time.. it is not. You have to cry every once in a while just to keep your sanity.. However humor is my best friend. And always will be. My wife still gets mad at me every time I am in the hospital cause of the joking around I do. I can be in extreme pain and still cracking jokes. She gets mad at me because of the fact that I may not be taken seriously at how much pain I am in or how sick I am. But.. I overcome that as well.. I still do however am timid at letting the public see my abs sometimes. It took me a very long time before I even went swimming for the first time again.. 18 years actually. But with the things they have made today, it is covered up very well. I realize that I am a guy and you are a young lady.. I am still young.. 37.. however I can only imagine how hard it is for you to think and feel how you look not only to yourself, but to others. Especially us being in a world of how everything is based on how we look. It is hard sometimes, and sometimes people do look. But to learn to still laugh and even more so to laugh at yourself is such a boost to your emotions and esteem. I was very much worried what my wife ( girlfriend at the time ) would think, but once I told her about it and she saw everything.. she told me.. I am in love you with you.. not your abs.. which I say at the time were pretty good looking.. I just did not have a 6 pack anymore.. after surgery it became a 4 pack.. 
lol.. If you ever need to know more and just want to email with questions, I would be more than happy to chat with ya. ..Michael
I don’t understand when you say “vac pack.” Do mean a pump system for drainage of your of the open area on your abdomen? Did have to use the “vac pack” in hospital? Why didn’t the E.R. clue into you having a large cyst? Sounds like a lot of pain and suffering. I hope you get back to normal soon.
All the Best.
I read what happened and I also am someone who has crohn disease. I was diagnosed 5 times and all came up as crohns. My first diagnoses of crohn’s was 4 years ago. I have been through doctor to doctor and they all are amazed on how aggressive and extreme my case is. I’m 22 and have been through many surgeys. Infact just three weeks ago I had surgery and had many complications. When I came out of surgery every thing seemed fine but after three days the inside incision ruptured and I needed a blood transfusion. I was in the hospital for about a week. Well all seemed to go well after that but little did I know after being out of the hospital for three days my staples started to bleed out where i found myself sitting in a puddle of my own blood. I was ruched to the ER were I developed a extreme case of being jaundiced. They ran some CT scans and found out inside I had five abscess in my stomach infecting me were I would have died in the next few days if I didn’t receive an emergency right then and there. When I got out of that surgery I woke with a large bandages on my stomach and in lots of pain. When the nurse came to clean the dressing I saw an open wound similar to your in the lower picture. My wound was lower and closer to my groin area though and a larger hole about 4in deep at the bottom and no more belly button. I was at first devastated when I the wound it started to make my eyes water. I was in the hospital for a little over another week. I can relate to your story alot.
Sorry needed some editing
I read what happened and I also am someone who has crohn disease. I was diagnosed 5 times and all came up as crohns. My first diagnoses of crohn’s was 4 years ago. I have been through doctor to doctor and they all are amazed on how aggressive and extreme my case is. I’m 22 and have been through many surgeys. Infact just three weeks ago I had surgery and had many complications. When I came out of surgery every thing seemed fine but after three days the inside incision ruptured and I needed a blood transfusion. I was in the hospital for about a week. Well all seemed to go well after that but little did I know after being out of the hospital for three days my staples started to bleed out where i found myself sitting in a puddle of my own blood. I was rushed to the ER were they had found I had developed an extreme case of being jaundiced. The doctors and nurses ran some CT scans and found out inside I had around five or more abscess in my stomach infecting me from the inside where I would have died in the next few days if I didn’t receive an emergency right then and there. When I got out of that surgery I woke with a large bandages on my stomach and in lots of pain. When the nurse came to clean the dressing I saw an open wound similar to your in the lower picture. My wound was lower and closer to my groin area though and a larger hole about 4in deep at the bottom and no more belly button. I was at first devastated when I the wound it started to make my eyes water. I was in the hospital for a little over another week. I can relate to your story alot.
Wow! That was a lot worse than I had it. I also have Crohn’s Disease, and I understand that it’s not a fun thing to get. What I find creepy is that I got it on July 4th… I got it when I was eight, and I spent two weeks in the hospital. You seemed to have had a much tougher time with it though. I only got an MRI, a CAT scan, and a colonoscopy and an underanoscopy. I hope you have no problems with your disease in the future!
hey guys, it good to read so many things about chrones disease of younger ppl. i was soo sick wen i was 16 and wen i was 18 i got diagnosed with chrones i was on my death bed bout to die i lost so much weight ended up being 35 kilos and i couldnt walk, no one belived me that i was sick they all just thought i was faking it or it was peirod pain, any way im fixed now after being in hospital for a month and few weeks wit a big scar on my tummy but thats life, i would really like some one to email me or sumthing and get to no other ppl that has chrones and lives in brisbane would b great to meet up
as i feel like a freak coz i dnt no any one that got it 
xx
hey mate good to c some one my age has chrones wel not good but yeh im 21 now and got diagnosed wen i was 18, plz email me any time it be good to get to no eachother n-o-f-x.babe@hotmail.com
I also have crohns for roughly around three years and just had the same surgery 8 weeks ago. I had an abscess and eight inches removed from my small intestine. Everything went well with the surgery but ten days later when I went to get my staples removed, my incision opened back up again so I had to get the wound packed and the dressing changed everyday for six weeks. It should be healed completely in two more weeks.
same here