My son's cleft lift 7/31/12

[LILLY]

My son's cleft lift is scheduled for this coming Tuesday. I have talked some about how we got to this point and what a role the people of this forum have played in getting us here. I think it is important to continue the conversation about cleft lift surgery so I wanted to start a thread documenting his progress- and questions I or others might have about the process. I have left his name out on purpose thinking that maybe if he were anonymous he may find it easier to share his surgery pictures. To me this is funny because as a mother of teenage boys I have made an effort to keep them from putting pictures of their butts on the internet and now I am trying to convince my 16 year old to let ME post his butt pictures. It's a strange new world.

I'm sure I will get more into the details of our backstory but for now I just wanted to ask if those of you who have been through it can say a few words about what your first week was like so I can get him ready.

Thanks so much.

 

[UnluckyOne]

Haha you already know my whole story but I just want to say GOOD LUCK!! His life will become much easier after this and I'm just happy you got on here and researched enough to get this worked out for him. Can't wait for the updates!

 

[LILLY]

Hi UnluckyOne. Yes I know a good bit about your story. Did you say you started sitting some at day 3? Oh and I forgot to ask this but I have heard a good bit about the coccyx cushion but I wasn't sure if people were mainly using them with the open excision surgery or is it also helpful after the cleft lift?

 

[UnluckyOne]

Yes I started sitting and driving at day 3. It's very awkward and a tad uncomfortable at first, but that's to be expected. Like we all say on here.. you must teach the area how it will be stretching, so the sooner he can start sitting (even just 10 minutes here and there), the better.
I am probably one of the only people on here who had surgery and didn't ever get a coccyx cushion. Most people stand by their coccyx cushion and say it helps a lot. It's a big help to people going back to office jobs after surgery so obviously it does relieve the discomfort in sitting..
I wouldn't say y'all HAVE to get it though because if his healing and progress is as fast as mine was, he would only use it for a few days before he's healed enough to no longer need it.
I would just suggest having him start out sitting on more comfortable furniture (not plain wood chairs without padding or anything).

 

[LILLY]

I'm thinking maybe we'll wait on the cushion. I think he would probably fight using it anyway-you know boys. Driving at all after three days is amazing to me. The second closed excision surgery my son had kept him from driving for nearly two weeks. I know you went back to work pretty quick too like within a few days. Did you still need your pain meds at that point? I know it's a lot of questions. As we are getting closer he is asking me more.

 

[UnluckyOne]

Haha don't worry about the questions it's the best way to get all of this figured out beforehand (which is the best way to go about it). I did go back to work 3 days afterward which is why I had to drive and I did still need my pain meds, definitely. I took them minimally the whole time that I was recovering, though. The meds made me pretty overheated and nauseous (I was on 3- oxycodone and 2 antibiotics) and I threw up quite a few times in the first 48-72 hours after surgery. The prescription said to take 1-2 every 4 hours but I usually took only 1 every 6-8 hours.
That kind of thing will be different for everybody but most of my pain was gone once I got the drain out (for me that was 6 days post-op).

 

[LILLY]

Thanks UnluckyOne. Throughout this process I have been telling him all that I have learned here. He has been very casual about the whole thing. Now he has started asking more specific questions and I thought maybe he was getting nervous about it-but I think I figured it out just tonight. It seems he is making plans with his girlfriend for the week and I think he is just trying to determine when he will be up to seeing her. You know -important stuff.

 

[LILLY]

Ok let's talk about cleft lift surgery.

Surgery day.
The surgery took around an hour and a half. The surgery went well. We were told that the extent of his disease would probably be considered moderate and that it was somewhat low but no where near as low as Dr. Rosengart has seen. Out of surgery there was pain but nothing that couldn't be managed with medication. He had a large bandage over the majority of his butt and he had a drain as we knew he would. At first he had no nausea but when he stood to go to the bathroom the nausea really hit him. This obviously has nothing to do with the cleft lift as everyone handles anesthesia differently. Because of the nausea we stayed in recovery a bit longer. I asked for a prescription to combat the nausea and we were given that(which worked really well) and an oxycodone prescription for pain and he was discharged. We were staying at a hotel because we live over 3 hours away. We checked into the hotel and he slept off and on through the day and was able to eat a full dinner and then slept well through the night getting up only once for meds and to go to the bathroom.

Day 1 post op
He had an appointment with the surgeon that morning. The large bandage was taken off and we were able to see what it looked like. It really looked pretty good, better than I expected and not scary. We were shown an area toward the bottom of the incision where there was scar tissue from previous surgeries. Dr. Rosengart said that the scar tissue makes it harder to close because there is no give to it like normal skin has but that he expects all will heal fine. He treated the incision with betadine and did the cigar roll gauze trick in the "crack" and then taped it with strips of regular medical paper tape you would find at the pharmacy and intructed us to do the same each day until we saw him again on day 3. There was a fair amount of drainage so the drain needed to stay in, but for most people he pulls the drain the next day. This was now Wednesday and it was determined that we would need to come back Friday to have the drain pulled. My son really wanted to go home and drive back in two days so that's what we did. He laid on his side in the front seat reclined and slept off and on comfortably. That night at home he watched tv and played video games with no problems. He has continued to take his pain med on time and his pain is managable. He slept through the night without problems.

Day 2 post op
He woke up this morning and was ready to take a shower which he was cleared to do. We thought the tape would easily peel because it looked, well, like paper. We were wrong. I remembered people here talking about showering with the dressing on to soften the tape so that's what he did. After the shower it peeled off easily but he was left with lots of tape residue. I learned from UnluckyOne how to get that off. We will start working on that tomorrow and I will explain what she told me and how it worked for us. At this point, half way through day 2, he has been spending most of his time on his side but has been able to sit for brief periods leaning forward as the surgeon has instructed. We have been giving him his pain meds with food because without eating he gets nauseous. He has stopped taking the nausea medication and feels like all of the effects of the anesthesia have worn off.

I am trying to be very detailed so people can use our experience as a reference. If I have left something out please ask and I'll answer the best I can. Tomorrow we go back to Pittsburgh and I will document hopefully in a timely manner.

 

[leist22]

Glad to hear that all is going well so far for your son. How has his experience post cleft lift compared to his experiences post closed excision? Any difference in pain levels/discomfort?

 

[UnluckyOne]

Ah I'm so happy to hear how well it's going! That is amazing that he's sitting at 2 days (leaning forward or not, it's still an achievement)! I wish I had gotten some nausea medication but I didn't know how bad it was for me in recovery so I didn't tell them I was feeling very sick.. I was very groggy and just wanted to leave. I couldn't hold down any food the first day so he's lucky.
I hope my technique for getting the residue off works for y'all and good luck with the rest of the healing process! I'll keep an eye out for your updates.

 

[LILLY]

Hi leist thanks for checking in. I actually asked him the same question today in regards to comparing pain levels. He said the cleft lift hurt more the first day because it encompassed the whole butt( or at least it felt that way) but he said the pain was not horrendous and it is dropping off quickly compared to excision. After his second excision he was afraid to ride in the car for a week because of the pain and couldn't sit at all for 5 days. With the cleft lift he rode home day 1 post op and today day 3 we went up and back to Pittsburgh and he was fine. The recovery seems lightning fast.

 

[LILLY]

Thanks UnluckyOne. When we were in recovery I thought of you and how sick you were. I remembered my kids having a nausea medication when they were small and asked for it. I said out loud I wishUnluckyOne would have had this because it would have made such a difference.

As I expected he is starting to become annoyed with the tape residue but he doesn't want to be messed with today- it's been a long day so we are thinking tomorrow. I'll come back and update tomorrow.

 

[LILLY]

Day 3 post op - drain came out
On this morning he woke up again after having a full night's sleep and was ready for a shower. He has had an easy time of showering without any assisstant both days. We had the routine better worked out and the tape removal went well. Before we dressed the area he tried to go to the bathroom. He was feeling pressure like he was ready to have a bowel movement for the first time since surgery. The first time is something that a lot of people here have talked about and there is a good amount of fear of pain and clean up and all. He was also a bit afraid and that morning it didn't happen. I gave him some gas X which did seem to help with the pressure. We traveled to Pittsburgh and he was in the same position as the first trip home. On his side reclined in the front seat-using a pillow behind his back, one under his butt, and one under his neck. The traveling is easier on him than I expected. When we got to the office the drain was removed and he said it really was no big deal. He said the feeling of the removal was a sting that was a bit stronger than getting a shot. He has been asking for his pain med less often so we have been slowly backing it off. He has been sitting normally for meals and sitting leaning forward for short periods through the day. The surgeon said we could give him a ducolax (stool softener) to help move things along so he did take one before bed. I didn't want to give him any actual laxative because we didn't want things to get going too much.

Day 4 post op
I will say today he is moving around with more ease. Everything seems a bit easier. He had a shower and was able to have a bowel movement without any problems. The dressing of the area is still about the same but we need to tape a piece of gauze over the opening where the drain was as it is draining still from that hole. We were told this is normal. He has only been taking one oxycodone every 7 or 8 hours. Tonight he went to a friend's house so he must be feeling pretty good.

 

[seeksanswers]

Dear Lily and Leist, Thank you for sharing your stories. I have a son, 16, who had pilonidal excession in February/ 2012. Of the 5" incision that was made, the bottom 1/4" to 1/2" has yet to heal. Dr. Vankatesh, a colorectal doc in Alpharetta, said it should take 2 months to heal. 6 months later, he is still suffering with this. It seems to get better (not very deep at all) and then it will be about 1/8" deep when I check a few weeks later. We have tried silvasorb cream and biweekly visits to the doctor where he has administered silver nitrate. I went to see a general surgeon, and he said there just isn't much information on the subject, and he could do exploratory surgery to see what was keeping it from healing, but it might not fix the problem. I think I will call Dr. Bascom after reading your stories and see what he has to say. I assume my son's is low in the cleft too, as it is close to his anus. I know he doesn't want me to keep shaving him for the rest of his life, so we need to find an answer. I wouldn't say there is a noticeable amount of drainage, per say, but it does look like a wet wound....not scabbing, etc. Will keep tuned to hear how everyone is doing. Thank you!

 

[LILLY]

Day 5 post op
Day 5 was a lot like day 4 with more drainage. His incision is pretty long and the surgeon warned us that it could continue to drain from the hole where the drain was and also from the bottom of the incision. That is what it is doing. It's not a tremendous amount but we do have to keep an eye on the dressings. The pain level is about the same and he continues pain meds every 8 hours. He is still taking it easy and is spending most of his time on his side. We did start to work on removing the tape residue. UnluckyOne instructed us to use a piece of gauze (the type that looks like netting not cloth) with water and a bit of soap. You have to scrub up and down and side to side. She said it might take some elbow- and it did- but it worked! Thanks again.

Day 6 post op
Today was his first date since surgery. It worked out pretty well that his girlfriend was away this past week. By today he was feeling pretty good and ready to see her. They stayed here at the house and watched movies which I was glad for because I was afraid he would try to overdue it. He didn't drive and doesn't feel ready to yet so my older son drove. In the car picking her up and dropping her off he did sit up normally (with a pillow under his butt) but he said that wasn't too much fun. At this point he is at the end of his pain med prescription but has asked that I call the surgeon to get a few more days. He has found a couple different ways of sitting that feel comfortable to sit for short periods. We were told whatever he feels comfortable with is fine. He is now able to walk normally (regular pace -non-hunched)and without pain. He is still having a fair amount of drainage and I see that continuing, but overall so far so good.

 

[LILLY]

Hi seeksanswers. Your son's case is a lot like my son's. He had his first closed excision surgery near the end of January 2012. After 2 weeks of stitches it looked like it closed. Then it began to pop open in different spots and the surgeon tried all the same tricks that you mentioned. We were having weekly appointments and mid-March he said he wanted to open it back up clean the edges and re-close it. The first surgery was pretty simple to be honest. He assured us the second one would be even less invasive. Well, once he opened it he saw tracts. This turned out to be a bigger ordeal than we thought. He said he got it all out and then stitched it again. My son had a good bit of pain and long story short the wound never was able to hold closed. It took an MRI in May to show that there was a large deep cyst and it again had sent up tracts. The truth is the only surgeons who have put effort into learning about pilonidal disease are those who perform pit picking and cleft lift. I would not let anyone else cut your son. Find a surgeon from the list or call Dr. Bascom directly. Please keep us updated. The fact that you are here means you are on the right road!

 

[seeksanswers]

Hey Lily,
Gosh, it does sound like our son's cases are similar, but where the original doc has wanted to keep it "status quo" since August, yours at least urged you to have it redone in March. I will take your advice and look for docs in the Atlanta area that specialize in pit picking and cleft lift. I have seen good results from a man named Dr. Pelta, and think I will make the call. I wish you luck with your son's continued success in treatment and recovery!!!!! Blessings, Seeksanswers

 

[LILLY]

Dr. Pelta is UnluckyOne's surgeon so you are in good hands. Good luck to you and your son!

 

[seeksanswers]

Unfortunately I just tried him, but he is in the heart of downtown and only has morning appointments; therefore, my son would miss school which isn't an option right now. Will keep looking...

 

[LILLY]

Day 7 post op
I did call to ask for a continuance of pain medication. I wasn't too convinced that he needed it but I also didn't want to deny him in case I was underestimating his pain. He was given Hydrocodone-Acetaminophen. The prescription allows him to take one every six hours but he only took one the entire day. It seems that he isn't in too much pain per se but the area is more sore and tender. I believe this is because of the drainage from the lower half of the incision. Others, who do not experience as much drainage, may have been farther along at this point. We are changing the gauze a few times throughout the day just to keep it as clean and dry as possible. We are using one larger gauze pad each time and it isn't soaked but it is stained a good bit each time we change it. The top half of the incision is much farther along in healing and the drain hole left from the tube has closed.

Day 8 post op
I don't think he took anything for pain. He is moving around like he didn't even have surgery. Sitting is still difficult. He is sitting more often and more upright (if that makes sense) than he had been. I think he may be more careful with the area than he needs to be but I am letting him take things at his own pace. He hasn't wanted to drive yet. The drainage remains about the same but the area of swelling which the drainage was coming from has gone down. I can see the area more clearly now where Dr. Rosengart said healing would be more difficult. I think anyone who has dealt with this disease for any amount of time knows that each new surgery brings hope and fear at the same time. I am trying very hard to concentrate on the hope!