Well that Month was a mixed bag

 

We went to Rome with some friends. It was a fabulous place and although super hot, the places we went were astoundingly beautiful. I have been once before when we were on a cruise, but we only stopped for a day and managed the Vatican with St Peter’s square, the Basilica and the Sistine chapel. This time we got all the main places in those three days. The evenings were wonderful with great company, great food and of course, drinks.

 

During that previous week and onwards I have had a lot of bother from the vaginal fistula draining. With it being hot and having to wear pads, it was nothing short of unbearable. As I always say, you will never know what is happening with someone just by looking at them. This drainage carried through to my Rome trip and I leaked a few times through to my shorts and was generally run down by it all. To add to that my leg didn’t want to walk and it caused me undue stress and had to rely on my husband and friend to help me.

All in all there were lots of great things this last month with some hideous bits thrown in just for good measure.

On the day of our return from Rome, I started to feel a bit off and thought it was probably me being run down from the heat and walking and leaking. I decided to do a lateral flow test and low and behold it was positive. Because I am in the vulnerable club I did my PCR test which was also positive. I was feeling quite poorly from then and it took some time to recover ( I was given anti viral drugs but because I felt I was improving by then, I didn’t need them, not going to lie, I was worried about taking them as I knew nothing about them and after reading up, it didn’t do anything to convince me otherwise. If I had been worse or not improving then I would have used them)

Also on the flight home we had a delay when we were on the plane, so take off was probably about an hour away and we all just sat there with the Ryanair staff hiding so we couldn’t ask them anything. The problem with that was I needed to use the toilet as I had a leak from my stoma, yes a bloody leak on a plane that hasn’t taken off yet. Eventually a Ryanair chap came over, and I was a bit distressed by it all as I was sat next to my husband on one side and another man whom I didn’t know, so didn’t want to say, “by the way I am leaking shit can you move please, and can I get to the toilet?”

So my husband came to the rescue and said could I have a private word. I followed the staff member and explained my situation. I will give him his due, he was lovely and told me not to worry.

I went in to the tiny toilet room, and didn’t know were to begin. I had never changed my bag in an airplane loo before and there was no room to lay my things out. I struggled through and not long after I had the bag off and was cleaning, it came over the tannoy that we would be taking off in 5 minutes. FIVE MINUTES? this gave me more stress and the more I tried to rush, the more of a mess I was in. If I held up the other passengers I would be in very bad books. Would they take off with me still in there? I eventually made it out in time and very flustered, I would love to know where everyone thought I had been. I got a few looks on my way back to my seat, and then just cried a little to my husband, the stress of it all had got to me.

I went to see my new surgeon recently about the results of my MRI. That ended up being a surprise, I knew I had large hole in my vagina from my other fistula surgeries and I thought the leaks were because I still had a sinus tract. In essence this is true, but it actually stems from a chronic pelvic infection which I have had to suffer for years, with many surgeries, some of them major, to try and repair the complications. I will be having a surgery in the near future ( when I can be fitted it) for the surgeon to have a good look and potentially flush out the crap, but if all else fails then it’s back to the drawing board. The only thing that is worrying is the fact that that gunk has been inside my pelvic cavity for years, what on earth is it doing to me?

So all in all a mixed bag of a week, and always a difficult one for those of us with chronic conditions. I was upset with my problems and have blamed them for the bad days on my trip and I only hope that any future trips will have me in better health. I hope that what can be done for me, can be done quickly.

6th year stomaversary

 

Today marks 6 years since stoma surgery and it always gives me a jittery feeling thinking back. It was such a long and difficult journey which I wasn’t sure I would survive, so remembering those times can be unsettling.

APRIL 3rd 2016

12.30pm I was being put to sleep and for the following 7 hrs approximately, I was having my life saved. Around 8pm I remember waking up with an NG tube down my nose and my family around my bed on the high dependancy ward.

The next three days are a slight blur, but I remember snippets of things that are vaguely daunting and just a bit scary. Tubes and wires, the awful NG tube scraping my throat so that it was painful to swallow. The central line in my neck that needed resiting to the other side.

Then ten weeks on the ward, the most difficult of all my hospital stays. Sepsis and rectal catheters, high temperatures, another NG tube but this time for feeding me. Tears and depression, fear and exhaustion. Scar opening up and needing packing, more tears wondering how on earth I am going to cope, seeing my stoma for the first time.

Then a turn for the better, with light at the end of the tunnel. Sunshine, a better future. Getting acquainted with my new side kick Tomas, feeling better and stronger each day. Feeling well.

This is just a very short version that began on the 3rd April 2016. A lot has happened since those early years with Tomas the stoma, good bad and downright painful but I think we make a great team.

 

Time for Tomas to have a makeover

Since getting my stoma five years ago to now has been a bit of a rollercoaster of leaks, trying different bags and seals, discomfort etc to now needing a refashion of Tomas. Unsure yet if they will keep it the same side or have to move it to my left side.

The last few months was a worry for me because my stoma now doesn’t work or produce output, but weirdly the fistula does it all now. it’s very near my skin so very difficult to make sure my skin is protected and another thing I have found out is that the pressure of the fistula doing it’s thing can cause the leaks because it is against the base plate where the force is. ( hmmm very jedi )

Anyway, I think it is time for Tomas to be reborn. That pesky fistula has had it’s day and I just hope another one doesn’t form, three’s a crowd.

My most recent bag change has cemented my feelings, I get sore skin even though output hasn’t always leaked, from the general tight skin and a vein that is visible and uncomfortable coming from the area of the fistula, with smaller veins coming from the stoma, I am sure the fistula has caused all of this. All I want is to have a nice stoma without added extras, I have kept going with this for 5 years. The fistula pushes the stoma to the left so it is awkward as F to put the bag on in exactly the right place.

The Eakin seals have helped so much these last years and without them I feel sure my skin would be so much worse.

It has been a few months since my surgeon has passed me on to a colleague due to retirement but I haven’t heard anything probably because of backlog covid etc. I have managed this long so a bit longer is neither here nor there. I have such a love hate relationship with Tomas, if it was a normal stoma with no issues I would be so happy because the stoma actually is great ( when it was working) . I rarely got partial blockages, and have never had a full one, it just seemed to cope with whatever food was given, with no trouble. Even a pea popped out in full like it was being shot from a cannon, hilarious. A slither of mushroom, no problem just popped out too. Peanuts on the other hand can be troublesome for me, I did have a  partial blockage from too many handfuls of peanuts, I just massaged around and drank plenty of fluids, luckily it seemed to work.

So to have to change because of an added complication is a worry.

As you can from these photos through the years, you can see the fistula changes, and I suppose it will only get worse.           

very small fistula
Slightly bigger but still manageable
Starting to cause trouble
Not a pretty one
double trouble
Double trouble
Comical side, to help me through the difficult bag changes

 

 

 

If it’s not one fistula it’s the other

I am now being referred to St Marks hospital in London for my vaginal fistula / defect. I have had issues ” down there” for years since my first surgery, and since the rectum removal so a bit longer won’t make much difference in the scale of things. Just hope they can help me.

Why do things occur or worsen straight after seeing your surgeon? you wait for ages to see them, then as soon as you are back home, things suddenly get 100 times worse. My stoma fistula has now decided to over power my stoma. For the last few weeks the fistula has decided to produce all the output whilst my stoma has none. The plumbing has altered and I don’t know what this means for the stoma. Will it wither and die? or will it keep on moving as if output will pass, but it never does?

 

Have you ever seen Scrad from Men in Black 2 with Jonny Knoxville? well this is Tomas and the fistula ( the fistula being the annoying second character attached to the first)

I think I need to consider a refashion sooner rathe than later and maybe re-site Tomas to the other side of my tummy, and just hope that I don’t get another one. My surgeon is retiring at the end of May so I think I need to ask for his advice re another surgeon.

Anyone else had a refashion or siting? how was your recovery? how long were you in hospital for?

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