The waiting game.

 

This is my first post on my shiny new site. I am quite pleased with myself because I have designed  and made it myself. Ok, it was a complete and utter mare doing it as I am quite a technophobe and it was far from simple, even reducing me to tears at one point because I lost a few things after pressing something or other and just did not know what I had touched to undo it again. Luckily it was just hiding and all was calm again.

Anyway todays post is back to bottoms. As you may remember I had my Barbie butt ( rectum, anus etc) removed in November after having lots of issues with the pelvic abscess still leaking through the back passage and rectal stump. I then acquired a sinus ( hole) that leaked. My surgeon said I may need another smaller operation to drain it but I was to have an MRI to see how deep etc it was. Anyway, just a few weeks before the MRI the damn thing stopped completely. I know this sounds like I didn’t want it to, which is not really the case, I just wanted to know what was happening down there and was worried that nothing would be seen. He had said he would see me at my next appointment to discuss my options.

I wasn’t too worried because it had stopped , so I could afford to wait to see him and explain that the leak was no more. My appointment was cancelled and rescheduled to May, again I thought ok. Then as that got nearer it was cancelled again this time until the middle of August. Again I was ok about it.

Well, that’s when it all went tits up in June. The leak has returned worse than ever and I now have to wait to see the surgeon. They have no cancellations and I still don’t know the result of the MRI. What if I see him and tell him that it stopped before the MRI but it is now back and he suggests another MRI as the first one did’t show anything and I have to wait again ? Will it still show a sinus tract anyway? I can’t even ask anyone. So I am in the waiting game , worried that they may cancel my next appointment too. He is obviously busy and doesn’t cancel clinics unless absolutely necessary but I am still concerned.

When I rang his secretary to see if he had looked at the MRI , even that was against me, the extension wasn’t in use anymore and I was redirected to another secretary who was temporarily looking after my surgeon too, so I don’t think she was very interested in my problems. But to live with a near constant leak from your bottom (that was removed and sewn shut I might add ) does your mental state no good. I am getting through Tena lady liners like no ones business, ( I like them because they are long ) and am forever aware of the horrible wet feeling. Not to mention how sore you get. It is strange but I almost know when it is about to cause a problem, I get a feeling of pressure like the hole has closed but is about to be stretched open again, I also get uncomfortable ” down there ” and don’t like sitting on hard chairs again similar to when I had the proctectomy. I try and think how lucky I am as I have recovered well over all, but the niggling bits are a right pain.

I am not alone. I have seen many posts from people who have the same issue, some have had many more surgeries to fix this awful issue. The one option is to have a gracilis muscle flap operation. this is quite a scary looking operation ( Yes, i have googled and youtubed it ) and i hope I don’t need it in the future. It involves using a bit of muscle from another body part  and using it like some sort of packing. ….OMG I was just googling again to check the details ( yes I know ) and I have come across the name of a book that caught my eye………. ……………..” Grabbs encyclopedia of flaps”………….. excuse me while I have a childish giggle. Also wide excision and split-thickness skin grafting !!!! It all sounds too mind boggling for a mere mortal like me.

I shall certainly let you know what happens, I know my bottom is a riveting subject 😉

 

 

 

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5 Replies to “The waiting game.”

  1. Well Clare you write very stoical. I look forward to reading your progress and you explain everything so a mere mortal like me can understand quote he he. I feel angry that with what you have you have to wait it in my mind be a priority at every stage. Sending love xx Yvonne xx

  2. I am going through exactly the same as you. I had a total panproctocolectomy n March 2013. That is the year Boris my stoma was born. I have suffered with a sinus tract ever since and have had 7 operations on my anus. The most recent one on the 9th of May 2017. My surgeon went deeper and wider this time. I had 7 weeks of daily packing. He said it was doing well and the packing could stop. But as per usual the pressure and gunk is BACK. I am seriously losing the will to live. I hate it. I am extremely exhausted constantly. My relationship is non existent. My partner is fed up with me being tired and miserable. Not to mention the lack of physical contact. I am going to insist on the muscle graft. I want a life x x

    1. Hi, you poor thing, it is a right game. I havent had any extra ops yet so don’t really know what to expect. It is so disheartening to go through a surgery for it to fail, and 7 times!!!
      Good luck with whatever surgery you have and please let me know how it goes.
      I love the name Boris
      Clare x

  3. Hi ya. I can understand your frustration. I had a few surgeries leading up to having a Barbie butt recently. I have been going through tens like nobody’s business and that was before and after the surgery. But I would love to know how everything goes for you. I look forward to your next post.

    Sarah xx

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