Comments on: Crohn’s Disease Can Constantly Change Your Life http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/ (Were you expecting a witty tagline?) Wed, 10 Mar 2010 14:30:41 +0000 http://wordpress.org/?v=2.5 By: michael Hoffner http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-2913 michael Hoffner Tue, 05 Jan 2010 09:08:13 +0000 http://www.lightningshock.com/?p=77#comment-2913 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 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

]]> By: Roberto http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-2896 Roberto Mon, 07 Dec 2009 13:27:44 +0000 http://www.lightningshock.com/?p=77#comment-2896 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 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.

]]> By: James Lewitzke http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1916 James Lewitzke Wed, 18 Feb 2009 01:23:38 +0000 http://www.lightningshock.com/?p=77#comment-1916 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. 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.

]]> By: Chelci Squires http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1853 Chelci Squires Mon, 16 Feb 2009 03:06:15 +0000 http://www.lightningshock.com/?p=77#comment-1853 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 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

]]> By: Crohn’s Disease Can Constantly Change Your Life Part II http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1405 Crohn’s Disease Can Constantly Change Your Life Part II Wed, 24 Dec 2008 22:58:07 +0000 http://www.lightningshock.com/?p=77#comment-1405 [...] I finally got my Intestinal Reattachment Surgery last Wednesday, whose condition I mentioned earlier in the [...] […] I finally got my Intestinal Reattachment Surgery last Wednesday, whose condition I mentioned earlier in the […]

]]> By: James Lewitzke http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1363 James Lewitzke Wed, 19 Nov 2008 01:40:23 +0000 http://www.lightningshock.com/?p=77#comment-1363 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). 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).

]]> By: Posts are Still Slow http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1361 Posts are Still Slow Wed, 19 Nov 2008 01:36:53 +0000 http://www.lightningshock.com/?p=77#comment-1361 [...] spoken with my Doctor and have a scheduled reattachment surgery (from my ileostomy) on December 17th (two days after my birthday). Also it’ll still take five to seven days to [...] […] spoken with my Doctor and have a scheduled reattachment surgery (from my ileostomy) on December 17th (two days after my birthday). Also it’ll still take five to seven days to […]

]]> By: Moira http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1358 Moira Thu, 13 Nov 2008 22:08:02 +0000 http://www.lightningshock.com/?p=77#comment-1358 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? 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?

]]> By: James Lewitzke http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1225 James Lewitzke Wed, 23 Jul 2008 16:29:37 +0000 http://www.lightningshock.com/?p=77#comment-1225 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. 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.

]]> By: James Lewitzke http://www.lightningshock.com/2008/07/21/crohns-disease-can-constantly-change-your-life/#comment-1224 James Lewitzke Wed, 23 Jul 2008 16:24:19 +0000 http://www.lightningshock.com/?p=77#comment-1224 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. 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.

]]>