I had my surgery (removed ovaries, appendix, omentum, large cyst and scrapings from diaphragm and bowels) on 14th August. Everything has gone really well, until Friday. 2 weeks ago I went on holiday, had 9 hour flight, but took all the precautions and felt better than usual after a long-haul flight. We had a great holiday and I set off home feeling wonderful and ready to go back to work. Half way through the flight my stomach started swelling and was uncomfortable. By the time we landed it was as big as before surgery (HUGE!), rock solid and painful.I thought it could be fluid retention or maybe I had lifted something too heavy (although I knew I hadn't) and would be gone in a day.
Anyway, my stomach has gone down a bit and it isn't as hard but the centre 4" of my scar (scar is above bellybutton to pelvis) is still quite painful and it's hard to the touch. I'm back to being aware of all movements, 'setting' when I sit down and I'm very aware of my clothes touching the scar. Otherwise I feel fine.
I wasn't too worried but had an appointment anyway with my GP so mentioned it. She examined me and thinks it could be a hernia or cyst, she's trying to get in touch with my gynae/obs or PMP specialist (I don't think it's anything related to my pseudomyxoma, more general wound) to have a look at the CT scan I had done 3 weeks ago and for advice. I don't expect to hear from my GP until tomorrow at the earliest. I'm getting worried now!
Has this happened to anyone else? What does it mean, is it bad?
Sorry to read you're having trouble with your scar. I know that when I had an infection after my first surgery 16 years ago I had a very high temperature for several days which antibiotics could not bring down. I don't think you need worry about infection. Also if there had been anything untoward like a cyst or hernia, then the scan would have picked it up I'm sure although it is good that they are checking it out again. I know that when I went to Ireland I felt terrible discomfort after the flight - itching and bloating - and that was only a half hour flight! Also I do know that muscle strain is quite common especially near the scar area where the muscles are weakened and this can lead to inflamation and tenderness. The physio told me only pelvic floor muscles for six weeks after the op very gradually working up to a more rigorous regime. She said if I didn't do this the complication was muscle strain which was a devil to get rid of.
Tomorrow will come soon enough and I hope they find out what the cause is preferably something that is easily corrected.
I'm glad you had a wonderful time on your holiday!
I'm pretty sure it's not infection - I feel fine otherwise and the scar is looking pretty good - I sunbathed in a bikini (with a respectable sized tummy, then!) and have a white stripe down my scar where I stored my book-mark to keep the sun off it!
I'm just hoping it is nothing too bad that will interfere with my big surgery. I've got my first appointment with the PMP specialist on the 23rd so no doubt I'll find out more then but I really wanted to go in there healthy so there's no question about having the surgery done. I'm sure it can't be the PMP either - it is too slow growing and they said they got a lot out last time.
I read a wonderful book whilst I was away - Love, medicine and Miracles by Bernie Siegel, all about positive thinking, visualisation, meditation etc, made me really confident and came back ready to take on anything, then I start panicking when I get a twinge. I'm going to set my visualisation fairy on it tonight!
EEK!!! I've just had 2 phone calls from my GP from home. First to say she's trying to get hold of my PMP consultant and she may send me down to the general hospital to have it looked at if she can't get hold of her. Then 15 minutes later another to say she spoken to the PMP registrar and he's going to be ringing me back, if there's a bed I'll probably be going back into Christies today.
I've just spoken to the registrar, he's got me a bed, but we've decided that I'll just go down to see him this afternoon so he can have a look and do a few tests, then if I need to be admitted he will. I don't think I need admitting, I feel fine apart from a sore tummy - I was on my hands and knees scrubbing the kitchen floor yesterday morning, that's how bad I feel! I think my GP is worried cause the PMP is odd and she is just being careful, better safe than sorry though.
Just got back from Christies. I saw two of the PMP team - I've been dying to meet them after reading such a lot about them. Both really nice. The doctor thought my pain is due to the scar tissue inside coming apart a bit and has started to reheal, I'm so relieved.
He told me I'd be getting my big surgery YEAHHHH!!!! He didn't tell me an awful lot because he says there is such a lot of stuff to go over when I have my appointment in 2 weeks and it would be disjointed if he told me half the story. He did say that I've got an area of deposits and dodgy cells in the small bowel which is clumping everyting together, they saw that when they were called into my operation. Small bowel involvement isn't usually very good, and often means an ileostomy for a minimum of 6 months from what I've read, but at the end of the day it's a small price to pay!
I'm not one for self-help books as a rule, I sell a lot of them on Ebay though. This one was sent to me by a friend of my sisters who is a psychoanalyst and I was very sceptical to say the least! Bernie Siegel is a surgeon and he noticed what he describes as 'exceptional patients' or the 20% that defy the odds and get far better outcomes than they are expected to. I could instantly recognise them and their characteristics from working as a nurse so it instantly struck a chord with me. It's given me a lot of reassurance that all the weird behaviour, coincidences and stubborn beliefs I have about my condition are very good!
I'm going to be concentrating my visulisation on small bowels now, with a bit of luck I might surprise them!
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