So I went in for a colostomy reversal on 12/27/11 as you may know, and everything went textbook and went well. I was released from the hospital on 12/30, and all seemed to go fine. Through the course of that night, I started running low-grade fevers and took ibuprofen, and it went away by morning. So I thought it was all okay. Over the course of the day, I started getting more frequent abdominal pain, and by evening ended up back in the emergency room. I was vomiting and running low-grade fevers again. Well, turns out I had a perforation and had peritonitis and went back in for emergency surgery to repair, and now the colorectal surgeon says that my colostomy is permanent. She stated that my intestines have poor integrity due to the super aggressive diverticulitis caused them to thin out more, and even though all went textbook, she will not risk it again. So now at least I know how to deal with having one and how to maintain it. It's okay, and the surgeon stated maybe after 5-10 years we can look into it getting reversed. But after all the pain and being in the Intensive Care Unit for a week and total hospital stay for 2.5 weeks after the second surgery, I don't think emotionally or physically I could put myself through it again. My family suffered having to see me go through it again and almost dying a second time. I don't think I will ever bother and just be comfortable in the fact that I am alive and that my wife and kids have me around still. What sucks is that I wish I could go back and have my old stoma back. It was in a much better spot, and now I have a convex stoma that barely even sticks out, making a tough seal when it comes to the barrier and appliance. So that blows, but nonetheless, I am alive and kicking and on my way back to recovery and can't wait to be functional around the house again. Now knowing what I know now, I wouldn't have bothered with trying to get it reversed, but it was worth a shot at least. Now I am on heart medication to regulate my high heart rate that I didn't have before the emergency surgery, but I think it isn't something I am going to have to continue. The doc said that it was from all the stress and infection from the perforation. I also ended up with a secondary drain in between my ribs. I guess somewhere through all the crap, I accumulated around 3 liters of fluid around my lung and diaphragm, causing poor breathing and whatnot, so that drain got pulled on January 20th, and seems much better now. It was much better than getting the drain pulled from my abdomen. It was actually painless, which was cool. So just trying to keep anyone that has read my blogs informed. And even still, anyone that has the opportunity to get a reversal, I would give it a shot. As for me trying again. HELL NO!!!
Can't take that ever again. I will, God willing, a very long time from now, die with my bag. My wife loves me as much as the day I met her, bag or not, and I have nothing else to be concerned with. So I am here to stay, everyone!!!
Dear Stoma Stan.
You have been so brave and been through a lot. Like you say, you have your life and you have a wife that loves you. If I had had a loving partner, I may not have bothered to go through it all.
I was told I was high risk of my reversal failing due to the Crohn's, but it was fine. It is this hernia repair which has left me in a state.
Good job we get to read other people's stories as it keeps you strong.
Kind regards, Sunny.
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Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
Hi there StomaStan, you really have been through hell and back. I'm truly sorry for your awful journey. But I am ever grateful for your sharing this with us. As well as all the positive stories, it's no harm to have a reality check and see that reversals aren't everything. You certainly have made me think twice about my own reversal, but I feel I owe it to myself to at least try. If it fails, I'll try and not let it upset me too much. You certainly are blessed, like Sunnydisposition says, to have a wonderful wife and family for love and support. It makes the world of difference. So thanks yet again for sharing this with us. I really appreciate that it can't have been easy. Here's wishing you the very, very best with your recovery and please do keep us posted. Take good care, Colm
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StomaStan -
I am so sorry to hear that your reversal didn't work; but I do understand when you say you had to "give it a shot!" I am scheduled for a reversal on 2-1; and according to my surgeon, I am a great candidate for it; but I, too, wonder if it will really work. And the only way to KNOW that for certain IS to give it a shot!
You can now wear the proud badge of permanent ostomy survivors; and I can honestly say that I am humbled by your recent sufferings as well as the sufferings of others here as compared to my own situation. Your life after your recovery period should be much better....so it is important on these difficult days to keep your eyes on the prize of wellness and recovery. You will be in my thoughts and prayers!
Darla
My Ostomy Journey: Bruce | Hollister
Hi Stomastan, my heart goes out to you in going through so much, but like you said, you had to try to go through with it. It's such a pity that your stoma is the way it is now, and not like the one you had before. No one knows how things are going to turn out with ops. I think you have been so brave in coping with the trauma. Thank you for sharing your story, I'm sure it won't put others off in their reversal. Unfortunately, in some cases like yourself, it doesn't work out. I hope you find it easier in some way to cope with your new stoma. Tc ambies...
Thank you so much for your kind words, Ambies. You know, while I was sitting in ICU with the gastro tube down my nose and all the drains and everything, I was getting very depressed and regretted even trying to get the reversal. And thinking on it now, that was just me having my small pity party, and with a defeatist attitude at that. After being home for 2 weeks now, and having my family there for me, I honestly am glad that I tried, because I can say that I tried, I didn't give in or give up. And now I am on the road to recovery. The hardest part is the fact that I was 161 post-op, and now after gaining 2.5 pounds, I am up to 132, at 6 feet tall. So if I turn sideways, I disappear! LOL. But all in good time, I will gain it back and my stoma seems to be cooperating a little better (sticking out a bit more), but still very convex and indented. I am just very grateful and happy that I have folks like yourself and my family as a support group, or I would be in a world of hurt! And I certainly would encourage others that are eligible for a reversal to give it a shot. My situation was just that...mine... and I have heard way too many good outcomes for ANYONE to give up. And you know what? There is a certain amount of relief and contentment knowing that me and Mr. Stoma are life partners because there is a certain finality to it that actually sets my mind at ease, because I know how to deal with it and it helps me move on and get back in the groove of things. Thank you so very much, Ambies...and K.I.T.
Thank you Bag n Drag, I appreciate you saying so. And you are right, it would be giving up or giving in to not try and get it reversed, but if it doesn't work out well, we know how to move on and be ourselves, bag or no bag. I really wish you the best and will have you in my thoughts and prayers that it goes textbook perfect, and your recovery is speedy. What is kind of cool speaking of permanent badges, is after the emergency surgery because of the perforation, the way my surgeon cut me back open, my incision scar is like a huge question mark, so it's like I could call myself the Riddler from Batman! LOL Though I have no feeling whatsoever in that whole area, it's actually kind of cool! This recovery has been a little tougher because after the same situation occurring back in 08/2011 where I had the back-to-back surgeries in less than 5 days, and then another 2 back-to-back in less than 4 days, I seem to be having more pain, but emotionally I am healing a lot faster than before. Through it all though, I know God is with me and I am incredibly blessed and highly favored because I am still here, and have the greatest wife EVER! If it wasn't for her, Lord knows I would have given in and thrown in the towel. Thank you everyone for all your thoughts and prayers and input! You guys are awesome!!!
Awwwwww, you're so very welcome. I'm pleased that your stoma is cooperating, lol. By the way, if you ever want to read one of my poems, I wrote about my stoma. Go look on my profile on my blogs, and it's called "Alfie and Me". I posted it some time ago, and it went down well with all on here. It's a funny poem and my way of dealing with my stoma antics. So if you do read it, hope it lifts your spirits. I hope you continue to progress in all aspects of life. It's good that you have your family to stick by you, it makes all the difference. I'm sure you will gain your weight back in good time. You have a great attitude in dealing with things. Anyway, take care. Look forward to reading more of your blogs for updates. Happy thoughts, ambies.
Darla
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I was just wondering how you were doing and how your surgery/recovery had gone over the holidays. I'm very sorry to hear that you and your family suffered a setback with your health. It's hard when elective surgery doesn't work out the way you want and I can certainly understand the self-pity party. Despite your struggles, you sound very optimistic and have an intelligent perspective on the situation as a whole. If mine doesn't work out, I hope I'm as emotionally balanced as you sound, especially after all you have been through the past month.
Although my ostomy is temporary, I can understand somewhat that sense of familiarity you speak of... in knowing how to handle my bag day in and day out, skin care, dietary changes, supplies, etc. It's what I do, it's now part of who I am... I think even if my reversal is successful, I will consider myself a better person for having been an ostomate.
You continue to take great care of yourself! Love your family, harbor no regrets,
Fable
Hi Stomastan, congratulations on how well you have handled a stressful situation. You are so lucky to have a wife who stands by your side for better or worse, as that really makes a big difference in how well one does. I will have my colostomy for life and when my surgery was done it was an emergency and done out of state. Well, the surgeon was not a specialist and he placed the stoma so low that the bag is halfway down my thigh, and the stoma is flush against my stomach. For a long time, I didn't know this wasn't done right, and I suffered so much but kept telling myself I just had to get used to this. After coming back to my hometown, my PC doctor saw my stoma and said, "My gosh, who did this surgery?" Then my oncologist said, "Who did this surgery?" Now I knew something was not right. Well, unfortunately, they don't want to do surgery on me as I have COPD along with other medical problems, so I live with what was done wrong. I am sure you will get used to a flush stoma and with your wonderful attitude, it won't take long. Best of luck to you and your family, Joyce.
Hi Stomastan! You truly are blessed with your family and mental outcome from all the surgeries. My initial surgery left me with a 12" abdominal scar and ileostomy...4 days later, I had to have a ventral hernia repaired on the midline incision. I also had drains, but in my abdomen. I spent 4 weeks in ICU and another 2+ weeks in a rehab facility to gain strength back, to eat, walk and learn to take care of my stoma! So, I can truly sympathize with you. Don't worry about your weight. I had lost 35 lbs. during this timeframe, and am happy to report that I gained all of the weight back in the first year after surgery...in fact, now 3 years later, I'm a bit overweight! My stoma has become more flush with my belly and I use Convetec ostomy barrier seals in addition to my actual barrier seal. I wear a 2-piece ostomy suite (the seal and bag that attaches to the seal)...the Convetec product seems to be working very well for me. It gives me the added protection from having the bag blow out or the seal leaking. Call your ostomy product supplier and explain your situation with the ostomy being flush...my company advised me to try the Convetec seals and I'm very happy with them! I usually can wear the seal/bag for about 5-7 days without changing them. The seal only gets weak after multiple showers. I wish you the best of luck in your recovery. I have decided on a permanent ileostomy after researching so many negative results from ostomy reversal surgery. So, we're a permanent ostomy partner! Continue being blessed!