My Burning Belly/Stomach Ordeal (long but hope it helps others)

I’ve been meaning to post about my burning nightmare and just haven’t gotten around to it until I saw Alice’s post today.

 

 

The night of my surgery (Thursday), my belly area starting burning, but I figured it was because I sometimes have a rash and irritation develop from bandage adhesives.  That night, I don’t know how many of those “bust with your hands and shake” ice packs we went through on my belly.  It was enough that the nurse told me there were no more in the wee hours of the morning and we resorted to cold rags until they could order more to be delivered up to the floor.  I was begging for more, but she said it would be morning before she could get some. I couldn't understand why she couldn't call another area and borrow some or make some sort of bag with ice in it!

 

 

The next morning, I was in dire pain and told the nurse we had to do SOMETHING.  She removed the bandages from my “holes” but there wasn’t any red irritation.  I began noticing that the entire area was ON FIRE, not just the incision areas. 

 

 

 

The kicker was that when I would get up and start moving, it felt like somebody had a HOT clothes iron and was holding it on my belly!  As soon as I’d take one step, I was screaming in pain and would have to lie back down.  I was worried (as was my sis) because I needed to be up walking to prevent blood clots, but I couldn’t even walk 5 steps to the bathroom.  She called Dr. MacDonald and came back to tell me he said he’s never seen this before but ordered some ointment from the pharmacy to see if it helped.  The ointment is Triaminolone 0.1% CR#15.

 

We’d rub some on periodically and it would give me a little relief for 20-30 minutes.  When he made rounds that night, we discussed this and again, he said he’d never seen this before and not sure what to do.  I had few small periods of time I could tolerate the pain, and I took one walk… down the hall to meet and visit Alice.

 

 

 

WELL, when I got home, (Saturday) anytime I would get up from chair or bed and take just a few steps (less than 10), the burning would come on like the wrath of hell!  I’d S.C.R.E.A.M. all the way to the bathroom (20 feet).  As soon as I’d sit on the commode, it would stop.  Walking back to chair or bed and it was right back. There were so many times from Saturday-Monday that I’d simply just have to sit or lay back down immediately because the pain was so bad, tears were shooting out of my eyes from the pain… instant and immediate excruciating pain.  I had NO pain when sitting or laying in the bed, just when I’d be up and start taking a few steps.  But as soon as I’d sit or lay down, w/in 30 seconds, it would completely stop.  I kept ice packs on my belly 24 hours a day for days on ends. 

 

 

 

On Monday morning, I called and talked to Bobbi, (Dr. MacD’s nurse).  She said she’d talk to him and call me back.  Well to be honest, I was pissed at what she called and said.  She said he had no idea what to tell me and that (again) he’s never seen such.  He referred me to my primary care doc!  I’m thinking that this man who just performed surgery on me a few days ago is passing me off and I was NOT happy about it, but it turns out to be a blessing!  I called my doc’s office and was able to be seen right away (since one of my best friend’s works there).  He’s a great doc and has seen everything since his days as a doc in Vietnam.  He’s also a dermatologist.

 

 

 

I thought what he told me was hogwash, but realized not.  He told me that what I had was “rare” and that he’s only seen it once or twice in his career.  He said that sometimes, the gas they pump in us for surgery gets trapped and starts embedding in our skin/cells and the carbon dioxide “settles” in the layers of skin in the belly and the gas causes the burning!  The gas is trying to get OUT and taking a “different” way out!  The whole time he was “kneading” my whole belly area.  At first before we chatted in depth, he was going to put a shot of cortisone in my belly to relieve the pain, but then he said that would impede healing and didn’t want to do that.  He said Capsasian cream “might” (or might not) help.  So we stopped on the way home and got some, but when I got home and read the insert and saw “in some people, may cause burning sensation for up to 48 hours,” I knew there was NO WAY I was going to add THAT to my already “on fire” belly.  I did ask him for a RX for another tube of the ointment, thank GOD. 

 

 

 

Well, low and behold, in a couple of hours, gas started flying out of me like crazy!  I could only think that was due to all the “kneading” he did.  That continued all night. Then, when I woke up the next morning, the burning was completely gone!  I was amazed AND elated!  (This was Tuesday morning.)

 

 

 

Well I was fine for a few days, but then on Thursday night/Friday morning, it started again, in a lesser way. (I had continued to “massage” my belly all week like the doc did to continue breaking up that gas in my skin and gas continued to “leave” me.)

 

This time, it only burned in the getting up/down process.  Once up, unlike before, I was fine.  During the night Friday night, I lay in bed and sobbed because I needed to get up to pee and I was SOOO thirsty, but I hurt terribly to get up.  About 3AM, I just clinched my teeth and got up!  I SCREAMED at the top of my lungs.  Those 15 seconds of getting up/down seemed like hours.  The best way I can describe it is that of a dagger being pulled from hot coals of a campfire, stabbed into my left belly, and twisted like a drill.  Again, once up, I was fine. 

 

The next morning my neighbor came over to visit and I asked her if I woke them up with my screaming in the night! LOL  This went on during Sunday.

 

 

 

Again, Monday into Tuesday, it subsided again.  I went to Dr. MacD Tuesday for my first follow up.  That day was a good day but Bobbi and he were both glad to hear what my doc had told me.  She apologized for having to call me with no answer because she said when their patients are in pain, they want to help, but that Dr. MacD just didn’t know what to do.  I told her that it did **** me off when she called and told me he said to go to my primary care doc, and she said that would have made her mad too.

 

 

 

My sis came to get me to hang out at their house for Halloween on Wednesday night.  It was nice to be out, but I was miserable because the tank top I put on under my shirt fit close to my skin, and I had to sit and hold it off me.  I’ve had that sensation/irritation since.  It’s irritating for my bed sheet to lie across me and also sometimes, even my gown is irritating.  But when I uncover my belly, I get chills.  I’ve since worn the most loose-fitting things I can pull out.

 

 

 

I do believe that the burning was gas related like my primary care doc told me, but I also think there’s some nerve issue(s) going on.  I’ve not had the burning since Monday (6 days) but now it’s more of a tickly/tingly/heebie-jeebie/creepy-crawly sensation (for lack of better terms). Just air on my belly is uncomfortable. 

 

 

 

I tried searching the forums here 2 weeks ago the day after I came home in hopes of finding some sort of clues for my doc but didn’t come up with much.  That Sunday and much of Monday after I came home, I spent hours online searching, trying to find some clues to give my doctor.  I did find a couple of nerve related things that are sorta what I’ve experienced.  I even asked Bobbi that day (and my own doc I went to see) if I needed a neurologist! 

 

 

 

These are things I could find that are similar to what I’ve experienced:

 

Allodynia: http://en.wikipedia.org/wiki/Allodynia (“a person with allodynia may perceive light pressure or the movement of clothes over the skin as painful, whereas a healthy individual will not feel pain.”)

 

Hyperalgesia:  http://en.wikipedia.org/wiki/Hyperalgesia

 

I also found this article where this can be “induced” by even small does (2) of Morphine, so I wonder if that could have something to do with this too!  http://www.anesthesia-analgesia.org/cgi/content/full/97/1/18 3

 

 

 

I’ve really been using the ointment the past few days.  It helps for longer periods of time now that it did in the hospital for that burning.  It sorta numbs the skins and calms the “heebie-jeebies.”  I rub it all across my belly first thing in the morning to “calm” these sensations.  I put on more about mid-day.

 

 

 

I’m wondering NOW, since Alice and I both were at Pitt, if it’s the kind of gas they are using and may be something new since Dr. MacD, who has done thousands of surgery, has never experienced! I’ve had gas pumped into me to have an ovary removed, gall bladder removed and a complete hysterectomy all in same areas of my belly for the most part, and never experienced this. (I did end up being taken to ER by EMS the night of my ovary removal for severe chest pains that turned out to just be gas.)  Stranger things have happened, so maybe we’re on to something here and maybe Pitt is using a new product!  I’m going to mention this possibility to Dr. M when I go back in a couple of weeks.

 

 

I hope this post helps folks now and in the future.  If I learn more, I’ll post it.  I just hope I don’t have some sort of nerve damage that is going to be long term because this is SO ANNOYING!

I am sorry you've had this too, but it is a relief to know it's not just me. I will be seeing Dr. Chapman on Tues and I plan to talk with him about it then.  I may even call their office tomorrow morning.  If I find out anything, I'll post it. 

I had a similar situation after my c-section with my daughter.  I felt like raw sores on the nerves of my belly and it burned like heck.  I remember crying from the pain of these sores/burns/unviewable scars/scabs lesions, what ever.  I think i had a chemical reaction to what ever i was given for my csection.

 

My god send was Aquaphor - this stuff is everything in one it helped so much.  My mom even got hooked on it for her feet because she had diabetes.  It cannot hurt to try you can get a tiny tube for a dollar or two and see if that works.  I always keep some on hand now for any and everything.

 

I never would wnat to feel thhat pain again.  I've had additional surgeries and never had that burning pain again.

Today is a good day.  I haven't applied any ointment and the clothes I have on aren't "irritating." I surely hope the worst is over!