ash5181
05-23-2009, 12:28 PM
Hi, I just found this site and this is my first post. I have really needed to talk to anyone who can relate to what I have been through.
I am 28, and was diagnosed with Crohn’s disease ten years ago. After being nearly asymptomatic for three years I was rushed to the ER on 9/15/08 and was ultimately determined to have had a spontaneous perforation at the terminal ileum. I underwent an emergency bowel resection at 2 AM, done by a very old surgeon I had never seen before who two days after my surgery underwent an operation so that he could see again, and has arthritis so bad he can barely move his hands.
I spent ten days in the hospital and went home with a barely-closed six-inch long incision that kept opening and draining over the next month. It took two months before it finally closed. This is the very short version of my story.
I have just had so much emotionally going on since this happened…I just really need to hear from anyone who has felt this way. I am angry that this happened to me. Also, I am very guilty about being angry since I know it could have been a million times worse, or I could have died from the peritonitis. It feels so surreal…sometimes I just look in the mirror and think “what happened to me??” I used to feel pretty, but now I feel so unattractive, mutilated, and freakish. I have been so depressed and have to fight it every day.
My scar is about half an inch wide since it healed so weird. And honestly, much worse than the scar for me is the “puffiness” that is now in my lower abdomen. It has been over eight months since the surgery so it’s no longer the fluid they kept telling me that it was. It looks like I am 4-5 months pregnant and I can’t wear any of my fitted clothing. Myy stomach has always been flat. When I told my doctor he said he had never heard of anyone being “puffy”. I am at such a loss to figure out why in the heck it is like this. I was wondering if anyone had gotten any cosmetic reconstruction? What can they do for you?
I know that some reading this might be thinking I should thank my lucky stars that I am alive, and do not have a colostomy, etc Please believe me, I am!!! But just because I am grateful that it wasn’t any worse, doesn’t mean I can deny the feelings that are inside of me. Please understand I am just looking for someone to relate to me. To say they went through it too, and had the same feelings and experiences that I did. I really need that. Thanks!
I am 28, and was diagnosed with Crohn’s disease ten years ago. After being nearly asymptomatic for three years I was rushed to the ER on 9/15/08 and was ultimately determined to have had a spontaneous perforation at the terminal ileum. I underwent an emergency bowel resection at 2 AM, done by a very old surgeon I had never seen before who two days after my surgery underwent an operation so that he could see again, and has arthritis so bad he can barely move his hands.
I spent ten days in the hospital and went home with a barely-closed six-inch long incision that kept opening and draining over the next month. It took two months before it finally closed. This is the very short version of my story.
I have just had so much emotionally going on since this happened…I just really need to hear from anyone who has felt this way. I am angry that this happened to me. Also, I am very guilty about being angry since I know it could have been a million times worse, or I could have died from the peritonitis. It feels so surreal…sometimes I just look in the mirror and think “what happened to me??” I used to feel pretty, but now I feel so unattractive, mutilated, and freakish. I have been so depressed and have to fight it every day.
My scar is about half an inch wide since it healed so weird. And honestly, much worse than the scar for me is the “puffiness” that is now in my lower abdomen. It has been over eight months since the surgery so it’s no longer the fluid they kept telling me that it was. It looks like I am 4-5 months pregnant and I can’t wear any of my fitted clothing. Myy stomach has always been flat. When I told my doctor he said he had never heard of anyone being “puffy”. I am at such a loss to figure out why in the heck it is like this. I was wondering if anyone had gotten any cosmetic reconstruction? What can they do for you?
I know that some reading this might be thinking I should thank my lucky stars that I am alive, and do not have a colostomy, etc Please believe me, I am!!! But just because I am grateful that it wasn’t any worse, doesn’t mean I can deny the feelings that are inside of me. Please understand I am just looking for someone to relate to me. To say they went through it too, and had the same feelings and experiences that I did. I really need that. Thanks!
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auntjudyg
05-24-2009, 09:10 PM
ash, Surgery is not fun even under the best of circumstances. When it happens suddenly and it is not your own doctor, it is just that much more unsettling. You are not alone in feeling mutilated after surgery. Many also feel like their body has betrayed them and it is a while before they feel confident that something else is not going on.
Yeah, eight months out there should not be any inflammation. I wonder whether there might be some possibility of a hernia? Have you tried moderate exercise to tone muscles? I'm kinda grasping at straws, but who knows?
Any other symptoms? Bowels moving regularly? Diet as usual?
Yeah, eight months out there should not be any inflammation. I wonder whether there might be some possibility of a hernia? Have you tried moderate exercise to tone muscles? I'm kinda grasping at straws, but who knows?
Any other symptoms? Bowels moving regularly? Diet as usual?
ash5181
05-25-2009, 12:06 PM
Thank you so much for replying!! Hearing that feels so good in an unexplainable way - thank you thank you! You know, no one has mentioned the possibility of a hernia, but that is a great suggestion and I will be looking into it. I never thought of that. Under the approval of a different surgeon (I moved out of state), I returned to exercise in late January including major ab work with a personal trainer. This was four and a half months later. Too early??? Well, maybe we're getting our answer. I think if it's not a hernia, my next step in trying to solve it will be to just continue with moderate ab toning for the next year and see if that helps any. Yes, I have had symptoms and as a result, another colonoscopy. It did not look good: 25 lesions in the first 5 centimeters of my ileum. I don't think it's related though. Thank you so much again, for just writing back to me...knowing others feel the same way is healing :)
ash, Surgery is not fun even under the best of circumstances. When it happens suddenly and it is not your own doctor, it is just that much more unsettling. You are not alone in feeling mutilated after surgery. Many also feel like their body has betrayed them and it is a while before they feel confident that something else is not going on.
Yeah, eight months out there should not be any inflammation. I wonder whether there might be some possibility of a hernia? Have you tried moderate exercise to tone muscles? I'm kinda grasping at straws, but who knows?
Any other symptoms? Bowels moving regularly? Diet as usual?
ash, Surgery is not fun even under the best of circumstances. When it happens suddenly and it is not your own doctor, it is just that much more unsettling. You are not alone in feeling mutilated after surgery. Many also feel like their body has betrayed them and it is a while before they feel confident that something else is not going on.
Yeah, eight months out there should not be any inflammation. I wonder whether there might be some possibility of a hernia? Have you tried moderate exercise to tone muscles? I'm kinda grasping at straws, but who knows?
Any other symptoms? Bowels moving regularly? Diet as usual?
Redneon82
05-25-2009, 02:27 PM
I too have a "puffy" section of my abdomen, only on the left side. It's very noticeable. I was checked for a hernia and I don't have one. I finally insisted on seeing my surgeon...what happened was, he tried to cut between my abdominal muscles, but unintentionally cut through them instead. Therefore, they were split and healed back together unevenly. He also told me that it's difficult to cut in the exact right place, and that it's permanent. If I do crunches, it will just strengthen the lopsided muscles and make them stick out more! So all I could do was diet so that my stomach is as flat as possible and it's not as noticeable.
My scar is 4 1/2" long and half an inch wide at spots, and is very crooked. It's also very dark. This is difficult, but I've actually learned to get used to it. I forget about it sometimes! I had to retire the bikini and bought a tankini. I had a boyfriend who didn't mind the scar at all, but we broke up, so I'm facing the prospect of finding a man who doesn't mind the scar. I'm nervous, but what can I do? Oh, and my surgery wasn't emergency...my surgeon just seemed to be more concerned with getting the surgery done than in worrying how I'd look after.
I totally understand...but you do get used to it in time.
My scar is 4 1/2" long and half an inch wide at spots, and is very crooked. It's also very dark. This is difficult, but I've actually learned to get used to it. I forget about it sometimes! I had to retire the bikini and bought a tankini. I had a boyfriend who didn't mind the scar at all, but we broke up, so I'm facing the prospect of finding a man who doesn't mind the scar. I'm nervous, but what can I do? Oh, and my surgery wasn't emergency...my surgeon just seemed to be more concerned with getting the surgery done than in worrying how I'd look after.
I totally understand...but you do get used to it in time.
ash5181
05-26-2009, 10:42 PM
omg, mine's much puffier on left too! Hearing from you what your surgeon said was so helpful....thank you so much for your reply. I talked to my doctor today after doing a lot of research on incisional hernias (at the suggestion of Judy below). The symptoms and pre-dispositions for this type of hernia sounded EXACTLY like what I am experiencing. However, I had already had a CT scan of my abdomen done for an un-related reason and when he re-read it today, he saw no hernia. I was very disappointed to hear that, because then there would be something to "fix". I have also seen a cosmetic surgeon who said he could fix my scar by excising it and when doing it also wanted to do liposuction. I told him I did not think the puffiness was fat..b/c I didn't have fat there before the surgery and come on, I lost like 20 pounds. How long ago was your surgery? And yes, I agree, it's like I have to be super super skinny now so that I don't look preggers. It's so discouraging, but yes you are right we have to get used to it! I too bought a couple tankinis. If you let yourself, you can get really down, thinking about how you used to look, and thinking about all the why do I have to have this disease questions...then I just have to think of all I have to be grateful for : ) Like, the fact that my boyfriend also does not mind it and is wonderful about it. The next person who you consider special enough to be your boyfriend will also not mind it...but I can totally understand your feelings...I too have thought about what it would be like to be back in the dating pool now. Thank you, again, for your input - I am feeling better already!!!
PS If you (or anyone reading this) ever wants to just talk or vent or express your feelings about this to someone who can relate, feel free to email me!! I know how therapeutic that can be, especially when most others, even counselors, cannot understand what it really feels like : )
I too have a "puffy" section of my abdomen, only on the left side. It's very noticeable. I was checked for a hernia and I don't have one. I finally insisted on seeing my surgeon...what happened was, he tried to cut between my abdominal muscles, but unintentionally cut through them instead. Therefore, they were split and healed back together unevenly. He also told me that it's difficult to cut in the exact right place, and that it's permanent. If I do crunches, it will just strengthen the lopsided muscles and make them stick out more! So all I could do was diet so that my stomach is as flat as possible and it's not as noticeable.
My scar is 4 1/2" long and half an inch wide at spots, and is very crooked. It's also very dark. This is difficult, but I've actually learned to get used to it. I forget about it sometimes! I had to retire the bikini and bought a tankini. I had a boyfriend who didn't mind the scar at all, but we broke up, so I'm facing the prospect of finding a man who doesn't mind the scar. I'm nervous, but what can I do? Oh, and my surgery wasn't emergency...my surgeon just seemed to be more concerned with getting the surgery done than in worrying how I'd look after.
I totally understand...but you do get used to it in time.
PS If you (or anyone reading this) ever wants to just talk or vent or express your feelings about this to someone who can relate, feel free to email me!! I know how therapeutic that can be, especially when most others, even counselors, cannot understand what it really feels like : )
I too have a "puffy" section of my abdomen, only on the left side. It's very noticeable. I was checked for a hernia and I don't have one. I finally insisted on seeing my surgeon...what happened was, he tried to cut between my abdominal muscles, but unintentionally cut through them instead. Therefore, they were split and healed back together unevenly. He also told me that it's difficult to cut in the exact right place, and that it's permanent. If I do crunches, it will just strengthen the lopsided muscles and make them stick out more! So all I could do was diet so that my stomach is as flat as possible and it's not as noticeable.
My scar is 4 1/2" long and half an inch wide at spots, and is very crooked. It's also very dark. This is difficult, but I've actually learned to get used to it. I forget about it sometimes! I had to retire the bikini and bought a tankini. I had a boyfriend who didn't mind the scar at all, but we broke up, so I'm facing the prospect of finding a man who doesn't mind the scar. I'm nervous, but what can I do? Oh, and my surgery wasn't emergency...my surgeon just seemed to be more concerned with getting the surgery done than in worrying how I'd look after.
I totally understand...but you do get used to it in time.
kizzy678
05-30-2009, 09:00 AM
Following my semi planned surgery I had a sub total Colectomy to try and stop me having to have a bag it’s the last thing in the world I wanted. The surgery seemed to go pretty well at the time I was a UK size 10 and feeling great however following the surgery I then found I was allergic to lactose for a number of months all I passed was watery stools and still suffer. My scar is 9” long the whole length of my abdomen but my surgeon also removed my belly button as he wasn’t sure which side of my 2 previous scars where the blood supply to it. I now have the most awfull lumpy bumpy belly it looks like a road map there is that many scars and tight stitches in it. I have just spent another 3 days in hospital to find that all the surgery I had last year may now be to no avail. The specialist now thinks I have a redundant bowel and may need the last bit taking out and a bag put on. At the start of all this I was a single parent I have since met a lovely guy who doesn’t bother at my scars, lumps and bumps all he cares is that I am healthy even though I have given him every excuse to walk out even tried to make it easy on myself and dump him first only to find him sat at my bedside following the surgery saying he didn’t care its what was inside that matters. I am the one who has the huge hang-ups over everything I am now facing the possibility of further surgery again but maybe this time alone as he is away with the army in Canada for the next 3 months unless I can get him home. Please if someone says they care let them in even if you do as I did and warn them you have walls of stone around you and why it may work mine have and I am fingers crossed getting married in Jan 2010 before he goes out to Afghanistan. I will never wear nice tight clothes but with someone close it makes it easier to deal with.
Sorry if I waffled on.
Sorry if I waffled on.
ash5181
05-31-2009, 06:54 PM
Kizzy, thank you for sharing your story! You are right, the most important thing is having someone who loves you; if you have that you are very lucky and blessed! I am so glad you have a good man in your life. I have the same, thank God!! Like you I also tried to push him away, at times thinking, "why would he want to be with someone so sick?"
Best wishes with everything you are going through right now. I know it must be very scary for you. I hope, like me, talking to and sharing experiences with others who can relate is helpful to you. We are here to listen! God bless, Ashley
Best wishes with everything you are going through right now. I know it must be very scary for you. I hope, like me, talking to and sharing experiences with others who can relate is helpful to you. We are here to listen! God bless, Ashley