My pouch hasn't been too great. I've been going to the toilet up to 20 times a day and 4 or 5 times a night, with some occasions lasting 5 minutes, others lasting an hour. I knew that something wasn't quite right and this was confirmed when I had an out patient appointment at St Marks a few weeks ago.
During
After
I saw Dr8 and my pouch nurse who told me that results from the pooing xray (remember that one?) show that my pouch is only emptying 10% of the contents and that suggests along with all my other symptoms that I have functional problems with my pouch. Test results also show that the muscles and sphincters in my bottom aren't working in sequence and that the signal from the brain is getting confused by the time it gets all the way down there. Brilliant news.
Plus I've been having the problems with eating. Everything hurts my tummy except rice and eggs again. Apparently that's all that Dynamo eats as he has Crohn's disease quite bad so at least I'm in good company.
All of this, along with my bowels refusal to absorb fluids, has them perplexed. They've never had this in another patient apparently. I'm unique. Which is all well and good but what can they do to make me better?
Not a lot apparently. The pouch nurse thinks that catheterising the pouch would be a good idea to help it empty all the contents. But she can't start me doing that until she has spoken to my surgeon who just happens to be on holiday. For 2 weeks. So for now I'm stuck.
So I left the clinic feeling a bit gutted. Because of the news I had received but also because it was the last time I would see Dr8 as his time on IFU had come to an end. I really liked him and respected him as a clinician. He cared about his patients (probably too much) but he always made sure that we were looked after and if he said he would do something then he always did, even if it meant him working 16 hour days to do it.
Back at home I'm starting to worry. If my pouch doesn't work then will I have to go back to a Stoma? I can't cope with a Stoma again, especially not one like the temporary Stoma I had last year. But if that's the only option what will I do? I can't take more surgery. I will have gone full circle. And for what? All this was going around my head. So when the pouch nurse emailed me to say that the surgeon was happy for us to try using the catheter I was pleased. Because at least for now it didn't mean having a Stoma. There was something else we could try.
I had the appointment all arranged when I realised that I couldn't get to St Marks. Hubby was working and I couldn't drive there, 1) because I'm on lots of pain meds and 2) because driving exhausts me and driving that far last time near killed me. Ok, slight exaggeration but I really felt dreadful by the time I got home.
So I sent out a message to friends asking rather cheekily if any of them could drive me in exchange for petrol money and sweets for the journey. But nobody could. Luckily Kitty came to the rescue. She drive to mine the night before the appointment and we had a girly sleepover and then she took me to St Marks the next day.
I had been dreading going and had, for once, not googled about it. If I had looked online and it confirmed my worst fears then I'm not sure I would have been able to go so I went in blind so to speak and shitting it (pardon the pun!) I was even more nervous when the pouch nurse called me just before we left to ask if I paid for my prescriptions as she was putting a prescription into the pharmacy for some local anaesthetic. It must hurt if that was required was all I could think during the hour drive.
When I got there the pouch nurse took me to her room along with another pouch nurse that had just joined the team. I had never been to her room before because I had always been an inpatient so she had come to visit me on the wards. So I sat there while she explained what the catheter would do and how it would work. I can't lie, I wanted to run out of the room because it was not going to be pleasant but I knew this was something I had to try. If it helped even a little bit then it would be worth it.
It basically involves putting a plastic tube up your bottom and letting the poo drain out. If it won't come or it's coming too slowly you squirt a syringe full of warm water up to help it all come down. But because the tube is quite big and my bottom is already quite sore that's where the local anaesthetic comes in.
The plastic tube is the catheter. It's 30cm long and 3/4 of it is inserted! The syringe on the left is the one I have to use. It's next to the standard 10ml medicine syringe for scale purposes.
The local anaesthetic gel has been specially designed by the St Marks pharmacy because there wasn't a product like it out there already. (Just goes to show how St Marks isn't like a regular hospital. If there's a problem they look for a solution and if it's not out there then they make it!) It's not licensed at the moment (which I think means that it hasnt undergone all the required testing yet) so we are not sure if my GP will prescribe it because they can be a bit funny about it the nurse tells me. If they will it will get couriered from st marks to my pharmacy and if they won't I will be making regular trips to Harrow.
So the time came for us to see if the catheter worked. "It's just like inserting a tampon" the nurse told me. "Well I don't know about you but I've never put a tampon up my arse" was my reply.
Imagine this. We are in the toilet that's in the pouch nurses office. That's me and the 2 nurses. The toilet is not much bigger than a cubicle you would find in a public loo so it's a bit of a tight squeeze. I try to put the catheter in but I can't quite get it in so the nurse steps in to help. I'm squatting over the toilet, a plastic tube hanging out of my bum and nothing happens. Typical.
"Wiggle your hips" the nurse tells me. So I start to wiggle as instructed, naked from the waist down, tube hanging out and with 2 pairs of eyes watching me. Awkward does not even begin to describe this. Then " I can see poo!" she shouts excitedly. This is so surreal. It can't be happening to me. I am not squatting over the loo whilst having a poo while two people watch me. This is a new low. Even the pooing X-ray wasn't this bad and I thought that was as bad as it could get.
And that's what we did for the next 20 mins. Wiggle, poo, flush with warm water. And repeat. And continue until I have no more poo or dignity left in me. The hardest part was maintaining the squatting position. I was bent over, leaning on the bin for support because my bad leg couldn't take it and started to get numb until it gave out completely. This is going to be tricky to do at home and I think hubby may need to be on hand to pass me things while I get used to it. Good job he's not bothered by all of this but it does add a new dimension to our relationship.
I have to do this every day morning and night. Some people do it when they're out and about but at the moment I can't imagine that. It's a bit much for me. After washing our hands and catheter (it's not single use amazingly, it has to be washed and used again!) we are chatting. I ask if my pouch function could be poor because of the mistake made in surgery when my vagina was sewn to my bowel.
The nurse doesn't think so. "You probably had a floppy vagina that just got caught up when they were stapling and sewing the pouch" she told me. And we fall about laughing at the thought of a floppy vagina. Something else to add to my list of ailments.
I was sent home with a bag of goodies, ok, a bag of catheters and local anaesthetic cream with a promise to ring her next week and let her know how I get on over the weekend. Kitty drove me back to hers and I ended up sleeping on her sofa covered in a fluffy blanket and with two hot water bottles.
Later in the day I was feeling a bit better so we decided to dye my hair.
Before
Yes. It's pink.
Hubby thinks I'm rebelling (against what I'm not too sure) but Kitty thinks I'm liberated and that sounds and feels right. I'm free now to enjoy life, to do all those things I've wanted to do but couldn't because I was too ill. So this, along with my new piercing is me grabbing life with 2 hands, enjoying the here and now and ticking things off my bucket list because you never know when it's going to be taken away from you.
NB x
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