Deciding on a new (more minor) surgery for the butt wound, sigh

It seems like the doctor acknowledged that there is a risk of not fixing the problem with this surgery, or of being on bed rest for longer than expected. But is it possible that this surgery will leave the wound in a WORSE state than before?

I think if there's a risk of ending up with a worse wound in the end, I would leave it alone. If that isn't a risk, then I'd go for it, and I agree that the "winter doldrums" are probably a good time to do an elective surgery and maybe be off your feet for a few weeks or a little more.

And yeah, I agree, what a luxury to be able to schedule it

blue, your post touches home.

The big question for me, which of course there is not a black and white answer, is if you have this fix surgery, what are the possible risks, complications? And what are the impact of those on how you want to live your life?

Can the wound get worse? I don't understand fully the problem with your wound, but will he be removing, the unhealed bad part, getting all the way down to core tissue, so it can heal properly from the beginning?

I wouldn't be worried about when to do it, that's an easy decision.

The big decision is, can the benefit outweigh potential risks. I mean if all you have to do is use a cushion every now and then, is that really a big deal? Verse, what if you end of with a bigger wound, abscess, or other problems. As I said, I don't really understand what your plastics guy is doing and what is wrong with your wound. But maybe if you can take it out of the surgery details and look at it in terms of impact on your life. So using a cushion, not using a cushion, are you in pain, will you be able to do more activities, etc..? You said "more function".. so what does that really mean in terms of your quality of life. Maybe try to really detail that out for yourself.

I know this stuff is hard and discomforting decision. My chronic butt wound problems are different than yours, but I can relate to the difficulty in having to make a surgery decision. Think I've had 9 EUA surgeries and multiple experimental endoscopy injection procedures trying to get the wound/sinus tract to heal in the last 15months, some of which resulted in a week long hospital stay. I just got a confirmed date today for a colorectal/plastic surgeon "double doctor" surgery for gracilis repair for my butt wound. Big big surgery and because I have two top CC surgeons involved, it isn't scheduled for a few more months. So I have plenty of time to keep thinking about it and might just back out of it!

For me, I am in pain, it increases when I try to get back to physical activity- like walking a lot, forget running. I miss my active life - biking, want to be able to sit or stand without pain increasing for longer periods of time. Some experimental things that were tried to heal it.. seem to have caused other gynecological problems.. probable fistula (MRI later this week to check on that!).

I am petrified of my upcoming surgery as they will be cutting the gracilis muscle out of one or both of my legs and using that to fix the wound after the wound is cored out (think auger) and made much larger to get to good tissue. In my head, I am thinking about what if this surgery doesn't work, I will have a larger unhealed wound and potentially a messed up leg or two, and of course all the normal "whole body" risks and potential complications from a major surgery.

So not to switch your post to focus on me, just wanted you to see what I've been thinking about for months. And it was strange to see your post today, when I just got a surgery date confirmed today.

Post Edited (ddd45) : 6/24/2013 9:44:04 PM (GMT-6)

Thanks everyone. I think it is a good idea to ask the surgeon if there's a possibility of this getting worse, and I will do that. At this point I think it's better to stick w/the surgeon who has followed the wound than to get second opinions. He's top notch; I don't think the problems were related to his competence.

ddd, great to hear from you; I've been wondering what's going on w/your situation. Congrats on getting a surgery date, and I can understand why it's terrifying.

Just to clarify, my current situation is completely different than yours, and relative to yours is barely anything. To explain mine better, it's like if I had a wound on my belly or my arm, and it healed so there was kind of a little crater or hole, like the opposite of a mole.... sort of a hole that goes inward, but not really a hole because it's covered with skin (epidermis) on the inside. If it were anywhere else, it would just be a little ugly and weird, but mine is about an inch away from my vagina, so it gets stretched and moved all day long, and the very bottom of the hole (kind of the top since it opens downward) tears and bleeds and hurts sometimes.

I suppose "loss of function" is an exaggeration in some ways, but I need an inflatable pillow to sit on a hard surface for more than about five minutes. I can't sit cross-legged, sit on a picnic table bench, ride a bicycle, need to avoid a variety of yoga poses -- that sort of thing. Not a big deal in terms of what you are facing or what I was facing w/the other surgery, but it is something I have to think about all the time.

If the wound were most anywhere else, this "surgery" would be closer to getting stitches in the office after a relatively minor sports injury or something like that.... I doubt there's a huge risk of making the wound a lot worse. It's just the irritation of having to stay off it and try to not move it around or tear the stitches so it can heal.

My last surgery was like yours but not as extensive -- I had the double doctors, but the wound was small enough that I didn't need flaps. At first I thought it was a giant step backwards, as they made the wound way bigger than it was, and it seemed like I was back to square one with dressings, visiting nurses etc., plus I had to live for months w/out sitting and bending. However, now I have no problems at all w/where the the original butt wound was, that part has progressed through all the appropriate scar tissue phases, and my colorectal surgeon doesn't even know about this new situation, which is at one end of the part they made bigger.

One thing I would strongly recommend since you have two months is to meet with a PT and/or OT (preferably both) to go over how you are going to cope with the recovery time. You may need to learn how to do things like use tools to put on your socks and how to get in/out of bed. If you are going to be laid up for a long time, then the bed rest itself has consequences, and it's good to be on them in advance (although it sounds like you've dealt w/variations of this before). Not sure if you ever read my blog post about my bed rest, but some might be helpful: http://tinyurl.com/c4no2pk .

Also, my friend I mentioned to you, not sure if you ever connected, got a special bed after his surgery. Not sure what it's called, but it was much easier to get in and out of than a regular one and it took pressure off the wound. He had anal cancer, and his surgery was more like yours. He's doing great now.

You are very intelligent and I'm sure you will decide with what best works for you.

You have a great plastic surgeon, that has been with you since the beginning. No need to change.

I feel that the possibility of it getting worse is not the issue. It's, is it going to improve? He said 50/50. The original area healed nicely and had wonderful scarring phases. Just this didn't. Because of your constraints, and of the pulling and bleeding, maybe it's worth it. You need more function and based on your description of the area and in what proximity, it's problematic. Removing the top layer and reattaching might have a probability of creating a stronger adhesion. You are not sick as before, so your healing won't be compromised. But it is weeks of bed rest again, and for a 50/50 outcome. You know how debilitating bed rest is, if you could withstand it....I say do it. But after your vacationing, please don't ruin your summer.

Keep me posted!

one thing I want to add for you to think about is something that several of my doctors continue to tell me... because you have IBD... even though your colon it out,.. you can still have issues. So therefore, healing CAN be compromised because of the underlying autoimmune disorder which you still have. That is one reason I have gone through the lengthy time and experimental injections is to avoid another surgery as my CC GI is very concerned about healing.

oops blue we posted at the same time so I'm editing and adding on. Yes, I thought maybe you were understating your limitations. You said bleeding, no biking, etc.. those types of things can be expounded on to a pretty long list of things you probably cannot do right now. Be real with yourself. Get out the pen and paper.

No worries about your friend. I am glad to know someone out there had it succesfully done! The plastic surgeon is very optimistic. colorectal surgeon says that's the only thing left to help me. Urogyn and GI docs very concerned about potential complications. But as we all know by now, its never black and white. My GP said if there is no right answer, then there is no wrong answer. So just make a decision!

Post Edited (ddd45) : 6/25/2013 1:43:58 PM (GMT-6)

I have UC. But all of my CC doctors (even my urogynecologist) say colectomy is not a CURE. The underlying autoimmune disease is still there. And I think its not just because you may have current inflammation which would be seen in the bloodwork. Its just the personality of an autoimmune disease. I don't want to add more for you to worry about, just sharing what I have been told by my docs and my own thinking process.

I remember trying to decide whether or not to have my second surgery last year due to the worry of pyoderma coming back again, the problems not being solved, etc. I really struggled with what to do, but in the end, I did go through with it because I really did want my quality of life to improve and thought it was all worth a shot.

I think a lot of it boils down to how much quality of life could potentially change if you do have the surgery, and if it's all worth it. The tough part about this decision, is the list of all of the things that can go wrong seems much longer than "improved quality of life" on the pro side, but if everything does work out completely, there is nothing better than improved quality of life.