Feeling Overwhelmed by Complex Surgery Options for Unhealed Wound

Well, I just got back from seeing the plastic surgeon I was referred to - my surgical wound from the second operation that created Stefan the stoma in November 2010 has still not fully healed. He tells me that what I thought would be a simple skin graft is not the solution. Either I will end up with an open wound for the rest of my life or if he decides to operate - he will have to reconstruct my entire abdominal wall by shifting the muscles from the side of my body to the center. He will also insert a biological mesh (made from corpses) - yes, dead people - to tie/knit the muscles together. He says that the surgery is going to be extremely complicated and dangerous and is very experimental. He is only one of 3 surgeons in North America that is authorized and qualified to do this kind of surgery. Needless to say, I am sitting here and crying my heart out - the first thought was I've been through so much and I don't think I have the strength to go through anymore. I've always lived with the fact that if a body can do something quirky or react badly in a spectacular way, that it was going to be my body. It's been tough, but I've always fought back and survived - now I just don't know - how can one person keep fighting a losing battle? I've survived cancer, diverticulitis, divorce, the loss of best friends and lovers, and family. I'm so alone now and I just can't see my way forward. Don't get me wrong, I don't wish I were dead or anything like that, I am very grateful to be alive and all things being said, I am glad that I have Stefan - he really did save my life. But right now, this is proving to be more than I can bear. And to top this off, this was my first full week back at work after 18 very long months and I'm happier than you can know that at least I can now have showers and baths once again.

Thanks very much for letting me get this off my chest. Maybe it will help me to dry my tears and calm my spirit - screw it, maybe I should just get drunk... that's if I can stop crying.

Hi Tess, just finished reading your blog and I'm in tears with your dilemma. Firstly, I would like to say how strong you have been with your relationships and family loss. Secondly, I can understand the thoughts of you having a gaping wound for the rest of your life. I knew of this because I've had an unhealed wound in my bottom where my rectum was, and it's been going on for 30 years now. Anyway, what I'm trying to say is, you may be at rock bottom now thinking life's being a bitch and you have every right to. Having come so far in your life with all that's happened, and gone back to work too. But you sound like a strong person, you must be to withstand all your disappointments you have had to endure, and survived cancer too. Whatever you decide to do in the future with the open wound, I'm sure you're the kind of lady who will conquer and win. My thoughts and prayers are with you. Take care, Ambies...

Thanks so much, Ambies. Your words mean a lot to me. I like to think of you as a good friend that I was lucky enough to find and have. How have you managed to live with your open wound, and what challenges have you faced with it? Perhaps your experience will help me to understand what I would be facing if my only choice is to leave my wound open.

Hi Tess. You're welcome and I hope I can help you in some way. Mine started when my rectum was taken out, and I was left with a wound the size of my fist. The surgeons couldn't stitch my bottom as I was having infections and very bad abscesses. So the wound had to be left to drain, but it was in a very wet area and that made things worse for me. I had to have it cleaned out every six weeks in the hospital and packed. It was painful and debilitating my life so much, but I had no options really. I've suffered pain and discomfort and it did keep me out of work. I wasn't able to stand or sit for the pain. There was one operation my surgeon wanted to do that was to take some muscle from my leg and use it to fill in the wound, and like you, it would be complicated surgery. But also, I was told at the time it may not work, I decided not to go through with it as I had already had so much time in the hospital and needed to see if I could cope without. The wound needed to heal and granulate gradually and fill in. As the years have gone by, this has happened, not without pain and suffering, and constant antibiotics and pain relief. To this day, I still suffer infections and pain, but the wound isn't so big and there has been healing from the inside. My life has revolved around my wound and has caused me a lot of suffering. Had I not been in the hospital so many times when I first had ops for my Crohn's, I may have considered the muscle transplant. I had to have a hysterectomy some time in between all this with the rectum wound, and a gynecologist had said to me it's a good thing I didn't have the op on my rectal area because it would have made the hysterectomy more complicated to operate on. I can't say I had patience over the years with my wound, I've lost so many years in pain staying home not doing anything because of the pain from it. I don't regret not having the muscle transplanted, for my time living with the wound there has been a great improvement in the healing process. I would imagine with your wound being on your tummy, you should have a better chance of healing, having the muscles moved to your wound area even though it could be complicated. But I also think it could change your life around for the better, but at the end of the day, it's your decision. Hope I've been of some help in some way..tc my friend ambies..x

Oh Tess, my heart goes out to you. I was even a little jealous of you last week when you returned to work. I can wholly sympathize with you. It is very difficult at times coping with everything but having an outlet like this site is a godsend. It is very difficult going through this alone, but rest assured we're all here to give you as much support as possible. I'm delighted to see Ambies giving you some wonderful advice. I wish I could do the same, but I'm still relatively new to all this. Just remember you are not alone. We'll be here to listen. God bless and take good care, Colm

Living with Your Ostomy | Hollister

Hi Tess, it seems so sad that you have lost friends, family, and lovers at a time you need them most. I cannot imagine going through all that you are going through alone. But you seem like you are strong. Try not to feel lonely. You have all of us here to support you. I wish I could reach out and give you a big hug. Donna

Tess....I am so sorry for all the pain you are going through right now. You may have that wound that won't heal, but believe me when I say that you have a beautiful, open heart that radiates throughout this forum. You have given me so much encouragement and support, and I hope that we can all rally around you right now and just lift you up in our thoughts and prayers. Just imagine a huge circle of us, hands clasped together in a big, circular chain, with you in the center of this people fortress; radiating prayers, positive thoughts, hugs...things that you need right now to help you decide what to do about your situation. Let our energy flow through you.....and allow the spirit of calmness and peace to comfort your body and mind......your answer will come. We're behind you all the way. Darla

Thank the goddess for you all - I can imagine that circle you talk about, Darla, and it is lovely and warm. I am trying to keep weak Terry quiet and in the back of my mind. In a way, I hope that the new scan shows that the surgery cannot be done - decision taken away from me. But that's not really what I want. What I want and need is a warm body, a great big hug, a shoulder to cry and rage on, someone to tell me that I would not be ugly and look like some kind of horror film monster with the open wound if that is what ends up happening - what I need is information - has anyone had an open surgical wound that has never closed? Has anyone ever had this kind of surgery or anything even close to it? I guess the old adage is right - you have to accept whatever comes, and the only important thing is that you meet it with courage and with the best that you have to give. And you are all helping me to do that. Not sure what I would do without you all.

Wtf Tess, I still can't fathom all that's going on with your wound. But I can tell you, shit happens - Kellie has already had her operation to have her abdominal wall redone. I think if you can give her a message, I will try to get her on FB! You hang in there, babe girl, okay? I think her username is sh@thappens, the girl with the tattoo around her stoma and the dead people mesh thing. I wish I could have that mesh whenever I get any news with my operations. Honey, I lost my brother, my dad, my best friends too. I really wish they can help you and pretty much all of us, but we have had some chats and I think you're a lovely person, mate. I wish I had the words for you, but see, you have us. We are listening. Please send me your email address and we can have some drinks via video chat. I'm so in for that, honey, right now. Sorry, I have been MIA. Haven't wanted to come here for a little bit. Enough dramas as well. Sorry, I haven't been in to chat with you. Send me a message or something and we can $@##$%^* together, okay? MESSAGE ME. Girl, don't go down without a fight. I'm still fighting. Fall down and get back up. It's all I have ever known and believe me, we might fall down for a while, but slowly, slowly get back in there. I don't know how you can make this massive decision. It's so much, but let us know, let me know, okay? I'm slowly trying to get back on this site. Life's a pain in the arse sometimes. I know I haven't even got an arsehole, but it's still a pain. Okay, gotta go. I'm such a lucky duck right now. Need my Morphine. Just another arsehole of a thing, you know!! XXXXXXXXXXXXXXXXX :) :( xx love you all. You too, Ambies darling. I need to get my shit together too. Check ya later, mooza. Australia, the world, the Universe. xxxxxxxx :D Why does my body hate me? Also, I thought we were forgiven after 23 years, hey!!!!

Oh sorry, I read all these comments. Tess always jumps the gun a bit. Yes, I have had an open wound like Ambies, but not that big. It's taken 4 years for the rectum to get a lot better, but yeah, it can still hurt and itch. I had the rectum closed too, but yep, infection within 3 days and my bum was running like a tap. :( It's taken a long time. It's not entirely closed, but it's so much better than it was. I think I've only had about 10 breakdowns so far, but a huge one last year. I'm no way over it, but as long as nothing goes too wrong, I'll be okay. Not so great. So sorry I haven't been around. I'll try to get in and chat with you. As I said, message me email address or whatever. Okay, over and out. :P

No worries, Tezza. My Aussie slang pops up now and then. Not sure if SH is going to answer, but I will get some info off her hubby if I can, Tezz. Xxx Mare Moozeeeeeeeeee. Okay, I've got to go get my Morphy. Bloody doctors are hell here. 7:45 pm appointment. Just to top it off, it's also a methadone treatment place. Oh, happy days, not, considering the doc is trying to talk me into methadone to treat chronic pain. No liquid handcuff for this Ozzie (Aussie chook. :(((( P.S. Nearly did not too long ago. Thank God the meth patients turned me off. Okay, later off to the madhouse. Pron put up with ranting and B/S for an hour. Sheeeeeeeeeeeeeeesh. Xxxxxx

Hi Tess, God bless you. Better days ahead. Brad

Thanks, Brad - It's cold and snowing here. I guess we had to have a little winter; it is Ontario after all. What's it like where you are?

Cold 26 degrees near Chicago, Illinois, USA. Can't wait for spring.

Yep, I agree with you - it was pretty nice today even with the snow.... You know what spring means? Go Cubbies go unless you're a Sox fan.

Don't quit

When things go wrong as they sometimes will;

When the road you're trudging seems all uphill;

When the funds are low, and the debts are high;

And you want to smile, but you have to sigh;

When care is pressing you down a bit

Rest if you must, but don't you quit.

Success is failure turned upside out;

The silver tint of the cloud of doubt;

And you can never tell how close you are;

It may be near when it seems afar.

So stick to the fight when you're hardest hit.

It's when things go wrong that you mustn't quit.

Thank you, Brooklyn, for that poem - here's hoping that better days and nights are on their way for those in need.

Oh sweetie, I feel for you! I have had 13 major surgeries with the best surgeons! Hopefully, this will help!

I just wanted to let you know I had the same surgery in Dallas at Baylor with Dr. Steven Leeds—look him up!

I had a long-term peristomal hernia the size of a grapefruit that had destroyed the integrity of my abdominal wall—also with huge skin ulcers, fistulas under the pouch, etc.

It was a long surgery and required the help of a plastic surgeon, but he rebuilt my ENTIRE abdominal wall, biological mesh and all, moved my ostomy to the other side, and the plastic surgeon was able to help with the problems that were under the original pouch. It was a totally new area, took a while to fully heal, but no problems now!

So, it's not bad to get a second opinion or to question your surgeon. If he acts like it is, his ego is the issue, and you don't need him!

I'm sure Dr. Leeds or his PA, Brittany, would be happy to do a telehealth session with you to ease your mind and confirm they can, in fact, work wonders! Living proof

Prayers and hugs to you, sister.

(I don't know if this counts as giving out too much info—if it gets taken down, it is a travesty. We are here to help others and learn.) I can't stand to hear that you're so incredibly upset—I can empathize, which is why I'm trying to help however I can!