Rectovaginal fistulas

Hi ladies,

 

I'm currently back in hospital. Had another vaginal bleed friday night. Which slowed the clots and frank blood after taking 8 tablets of tranxemic acid. Yay! Then developed old blood discharge vaginally which changed on Saturday to faecal. Had CT today to have a closer look as well as bloods etc and now waiting to see gynae onc team in the morning to discuss results and surgery options. But it seems most likely that I have a rectovaginal fistula now.  Hoping if they are going to progress with surgery that they let me do the work up while waiting for a date from home. Bit disappointed in the new turn of events.... But oh well.... am dealing with it. 

Hi Bexter, 

sorry to hear your news.  I‘m hoping you get some suggestions on the way forwards tomorrow and then can proceed in the next stage of recovery. 

 

Just wanted to say I’m thinking of you and hope things get better soon x 

Oh Bexter, so sorry to read this. Hope they can do the surgery to help you soon x

Thanks sooze and sussanLaughing

 

They are going to keep me for a few days and do quite a few scans, maybe colonoscopy and maybe examination under anaesthetic. It may not be repairable so i might need a defunctioning colostomy formed to solve the problem. Will keep you updated.

Sorry to hear this Bexter after all you have gone through already. Good luck with the hospital admission and really hoping they can repair the fistula. Keep us updated. All the best xx

Ach, you've been through so much already! Am rooting for your team to 'get to the bottom of this' (pardon the pun!) and find a solution that allows you to be free of pain and hassle so that you can recover properly. Still thinking of you and keeping everything crossed through all of this. x

Thanks Rachel and cheery!

 

Everything still up in the air! Having an urgent pet scan tomorrow to see what's happening. Then they were going to do a eua, biopsies and sigmoidoscopy friday but they cancelled that as they think they might have to do more scans first because they have concerns that it could involve my small bowel rather than large. So I think it will be a lot of scans dependent on the pet scan. I'm seeing radiation oncology today as an in patient. Quite confused by everything at the moment and waiting for the big bosses to assess a plan amongst themselves. 

Phooof, thanks for the update, you're going to be exhausted by the time they've finished! Can you find someone to give you a neck & shoulder massage, or a foot massage or a facial or something? It sounds like you could do with some TLC.

Hahaha too true cheery !Laughing

 

Likely plan is the urgent pet scan tomorrow to ensure no new nasties anywhere. If no cancer, Then they might want to do more scans to check nothing funky going on with bowel function that will impact. I will then finish workup for a defunctioning colostomy. Given time to heal post op then start hyperbaric oxygen therapy to treat all my damaged tissues. They're not sure whether or not it will be reversible. Depends on whether my body will be able to heal but at least after the surgery some of the diet and nausea issues might settle. Not sure if they will make me stay in hospital or let me go home to get ready for surgery. They gave me a few hours at home today. Really helped cheer me up. 

Thanks for the updates Bexter, I've been thinking of you. Hoping they get something sorted soon and you can start to mend x

Thanks sooze. They have let me go home while I await the pet scan results before they can further prep my surgery. They gave me strict instructions to call them for readmission if I am not coping with pain, bleeding or nasty faecal discharges or have fevers. Always happier when home though. It's great for the head and soul. Don't know if I should be more worried about a recurrence as the gynae onc and radiation onc are as a potential for my current problems. I will try and forget about everything for the next few days and enjoy being home.

I have been thinking of you too and your pet scan you are having in 2 weeks. Hopefully we both can look back in a month or two and be on the mend. Much love xx

Thanks Bexter. I phoned the oncology secretary today as I still haven't heard about the scan. I had a blood test sent that needed to be done before it and got that sorted. She said that another consultant should have arranged it and she'd phone me back.. but no call. I'll phone her again tomorrow Frown

I agree with you about hospital and home. You can relax and sleep much better at home... and the hospital food here is disgusting !!

Love to you too, chin up and keep a troshin' as we say in Norfolk.. 

Goodluck with the follow-up phone calls chasing the pet scan with the nurse. When you have a date it will make it easier to get mentally prepared. I always get a bit nervous with the pet scan... not because of the scan thats easy (mind you my bladder tested its limits this time) but because I think about the impact of the results. I Have a copy of pictures at home but haven't opened the packet and sneaked a look because I know i will just stress if I do. Hope all goes well sooze and you get the best possible result for the scan. Take care xx

Hi all,

 

My radiation oncologist rang me to tell me the results. Pet scan was good news lymph nodes ok and no obvious lesions. I have increased uptake in the pelvic region but they think that is more indicative of inflammation rather then cancer. Now just to wait til next week to get a plan for colostomy work-up and for gynae oncology to contact me.

 

Ah Bexter that's great news, you must be SO relieved! That report put a big smile on my face just now. Now you can just concentrate on being at home for a few days and giving your mind and your body some much needed down time before the surgical preparations begin. I'm so pleased for you. x

Great news on your good Pet scan , that's a big worry off your mind. How did you get a copy of the pictures ? They have never given me any or told me any results beforehand.

Hope you're having a good rest at home. x

 

oh BTW .. my scan date is through Tuesday 17th

Thanks cheery Laughing I am so happy. I was a bit scared of recurrence as they didn't want to plan any investigations til they got  the pet results. Makes it much easier being radiation damage. 

 

Hey soozeLaughing , In Australia. They have always given me a book with pictures each pet scan i have had. The ct scans tended to be loaded on to their xray portals but they have given an a4 size binded book for my pet scans.  I'm glad they are not going to make you wait weeks for the pet scan.... that would be awful. I'll check and see how you are going Wednesday.  My radiation oncologist (I'm lucky) is a kind man so he usually tells me the results as soon as possible to reduce the stress. He rang my mobile yesterday to let me know. Gynae onc have their meetings and make you wait longer til you have a follow-up. Hopefully it all goes well for you. I will be thinking of you.

 

Much love to you both xx

Brilliant news ,no recurrence 

ive been quietly following your posts and wish you good luck with your next treatments to alleviate your symptoms x

Thanks mousehouse Laughing

Hi ladies,

 

Long day. Went for sigmoidoscopy but they cancelled as my heart rate was elevated and they were concerned I might have a clot on my lungs. The CT of my pulmonary arteries was all clear. The colorectal surgeon did a vaginal and rectal exam. And my fistula is about 5cm. She recommended to get a colostomy as soon as possible. She is going to put it in on Thursday 26th. She said It will be much better than what I am going through currently with the fistula. She will look at doing a sigmoidoscopy down the track but really I just need the surgery now. I will see the stoma nurse early next week for a bit of education first.

 

I am just tired of it all and it will be good not to leak anymore. It might even make the pain more bearable. 

Take care everyone. .Will try to keep you updated but might be a bit slow as going into hospital again. Xx