Waiting List Lifers.. 

Waiting List Lifers.. 

When my surgeon agreed to do my ileostomy he asked me if I would do him a favour. He is running a study of people on waiting list for surgery and hoped I’d partake. Of course, I said yes. In my opinion, the more doctors know about life as a patient the better. So, in that vein, I’d like to share with you my experience of waiting for my surgery date… 

It’s been about a month now, since my surgery was agreed. Over two weeks since my pre op. Still I have no date. Things may have gone a little faster, but my extensive and complex list of health issues threw a spanner in the works. As always. 

In order to be scheduled for surgery and receive a date you need to have the go ahead. ‘Fit to proceed.’ Whilst my tests at the pre op all came back ok (despite being told I’d had an acute kidney injury I wasn’t aware of recently) I couldn’t be pronounced fit without more information from my POTS team. Recently they’ve put me on medication for MCAD and the nurse who oversees pre op was, rightly, concerned this may affect my care needs whilst in surgery. My progress along the conveyor belt was halted until an email came back outlining the correct protocol to follow for me. 

Whilst I appreciate the fact that the hospital is doing their best to ensure a good outcome for me, the wait was maddening. Every day I was calling around, leaving messages on voicemail after voicemail. Until eventually I heard back from the lovely lady coordinating my pre op assessment to say that she had given the green light!! Fantastic! I was elated! Finally things could get going!! 

OR NOT… 

My surgeon was away most of May and will continue to be away in June. Meaning that, if I want to be sliced and diced before July I need to put my faith in another surgeon. A surgeon I haven’t even met. This is something I was dead against. I like my surgeon, I TRUST my surgeon. He is the best my hospital has to offer. I always said I would just wait to be seen by him. 

But this waiting is driving me mad! Each day I hope and pray that the post will fetch me a hospital letter with my admission date, or the phone will ring with a cancellation I can slot into. Meanwhile, my condition is worsening. The prolapses continue to get larger and larger, making it harder to pass anything. Anything at all. My insides hurt. They ache and they stab, twist and pull. My stomach swells and my kidney area feels about ready to explode. On top of all that sits the stomach cramps and absolutely crippling back pain. 

I’m trying to continue normal life. To still get out and about. But by the end of the day I’m yelping in pain like a wounded pup. Any movement takes such an effort that it’s leaving me on the constant verge of tears. I feel angry and disgusted with my body and what it’s doing to me. I’m afraid that my bladder will retain too much and give out unexpectedly. I sleep (for the little I can get) on a towel as I’m afraid of accidents. I’m afraid that soon my back will be so painful I won’t be able to attend to my complicated bathroom needs. I’m afraid that my kidneys are becoming damaged from the waste I cannot clear out of my bladder. I’m afraid that things are worsening to the point that surgery will have to be more extensive than we hope. 

On top of all the health fears, I have the fear of letting my children down. Letting my husband down. Being seen by him as a vile and grotesque creature. All these fears, the pain and exhaustion, they are all bubbling up inside me twenty four seven. Each day I’m left waiting feels like a lifetime as my mood plummets to depths I dare not think about. I am constantly walking a tightrope, a thin sliver of hope preventing me from falling apart at any moment. Tears and anguish are never far away at the moment. 

So, whilst I am truly desperate for MY surgeon to do the operation, I told the waiting list coordinator I would accept treatment from another surgeon. In fact, my exact words were ‘I’d let anyone do it. As long as they have a scalpel and a will to do it, I’m in!’ 

That’s actually how I feel now. The desperation to get it done outweighs the need for my doctor to look after me. But, even with my flexibility, it’s not that simple. A surgeon cannot simply be assigned a case and told where to cut. Surgery doesn’t work like that. Each different surgeon has to agree to the merits of the case. They need to read the file and understand why the patient was offered that road of treatment. With my health problems being so rare, that’s not guaranteed for me. I worry my notes could be passed round, with each doctor refusing to do the surgery. In the meantime my surgery date with the doctor I want is getting further and further away. 

So I wait. I wait and I worry. I wait and I cry. I wait and I grit my teeth and attempt to cope with the pain. 

Such is life on the waiting list. 

The Surgeons Decision. 

The Surgeons Decision. 

If you follow my blog you may remember the impassioned email I wrote my surgeon. I was honest and brutal about the difficulties I’m facing thanks to my prolapses; basically I begged him for help. He responded. Soon after I was sat in his office and given three options to choose from, repair, permanent irrigation tube or, stoma. After a lot of research and soul searching, consultations with my GP and POTS nurse, I decided the stoma was the right decision for me. 

A few weeks ago I saw my surgeon again. I told him how my issues had worsened. Seemed to be worsening each day. He began to suggest re doing tests I’d had months earlier. A year or more earlier in fact. I took a deep breath and stopped him in his tracks. 

No more tests. No more thinking. No more suffering. I told him I had made my choice and was ready for surgery. My voice shook as I spoke of the research I had done and my reasons for choosing this route. I spoke of the impact on my life each surgery could have and how my previous ‘fix’ of one of the prolapses has already failed. Failed to the point of being worse than it was. I made it very clear that I knew the pitfalls as well as the positives of having a stoma. This is in no way the ‘easy’ option. There was no easy option to choose. All were fraught with complications and changes to my life. It is just that this path gives me more chance of change. Of no longer suffering with pain in my stomach and back all the time. Of not living my life around my bowel. 

Eventually I stopped talking. I sat there, shaking, awaiting his response. ‘Right, we will get you on the list for surgery then.’ 

HE SAID YES!!

He agreed. Immediately. No more appointments. No more tests. I would be put on the waiting list for surgery! Not only that, but he decided to do an ileostomy rather than a colostomy. This will bypass all of my large bowel, hopefully bypassing all my problems with it! He’s going to do a keyhole loop procedure for now, if that still leaves me with pain from the prolapses then he will consider a larger procedure at a later date. I can understand that decision, after all I do have a bajillion things wrong with me. Why have a huge procedure when a relatively small one could do the job? A procedure that only takes forty five minutes will hopefully change my life completely. 

He left the room to get the required paperwork and I dissolved into a puddle of tears. My friend comforted me as I sobbed. My tears weren’t sadness; they were relief, joy, fear and excitement all mingled into one cocophany of emotion. As each breath rattled through my lungs I felt a weight lifting from my shoulders. Soon, within eighteen weeks, it would all be over. I’d be through the surgery and on the road to recovery. I could hopefully start living again. 

But at the same time, I knew it would all just be starting. My recovery. Adapting to a new way of functioning. Living with a bag and evolving my life around that. It was a truly terrifying and liberating thought. 

The surgeon returned and was perplexed at my tears. ‘I thought you’d be happy?!’ ‘I am!’ I exclaimed, explaining the explosion of emotions overwhelming me. As I left I hugged him and thanked him for saving my life. Because whilst the problems with my bowel aren’t at the point of killing me, they are stopping me living. Hopefully, with this change, I’ll be able to take part in my own life again. 

NB. During the appointment my surgeon spoke of how refreshing it was to have a patient be so open and frank about their condition. He really appreciated my in depth emails. Whilst it is not always possible to write to a doctor directly, we can advocate for ourselves during our appointments. As a patient, I urge you to research your condition and your options. Take notes to appointments if needed so you can speak clearly about your problems and the way you want treatment to go. NOBODY knows more about your body and your life than you, you are the expert in that field, so be confident in yourself. If you’re not happy with treatment plans, request another opinion. This is your body, it is you that has to live with the treatment being offered. You cannot simply end a shift and walk away from things, so advocate for yourself. Always. 

Testing Times. 

So, I have a problem which I haven’t really spoken about. Partly because I’ve been digesting this new issue for myself. Partly because I’ve been embarrassed. But I shouldn’t be. This is a medical issue. A complication of one of my conditions, and it’s not my fault. 

Last night I went for a test on this problem area. A test I was terrified of having. It was then that it struck me. I’m not the only one going through this. I’m not the only one scared about these tests. The fear of the unknown can be a terrible thing. So I’ve decided to share my most intimate of troubles and my experience last night in the hope that it eases other people’s fears. 

Here goes… My name is Jennie and I have prolapses. Yup. That’s plural. I’m not going to sugar coat it. My bowel and back passage are pushing up into my vagina. My bladder is pushing down. My uterus seems to have dropped towards the front of my vagina and my back passage also prolapses out of my anus when I pass a motion. Basically my nether regions are one big old mess! Living like this isn’t fun. But explaining why is something I’ll brave another time. 

Luckily I’ve been referred to an excellent doctor who is determined to fix me. Even though, due to my underlying health conditions, I’m a very complex case. The first step on the road to surgery was a test called a defacating proctogram. This can be done either with X-ray or MRI. I was to have the MRI, and let me tell you I was terrified. 

My basic understanding of the test before I went was I would have something (I thought maybe barium) pumped into my back passage and then I’d have to poop it out in front of someone. My experiences of anything going up that area has always been incredibly painful. So I was nervous to say the least. 

The test was in the evening at Weston Park Hospital in Sheffield. Due to the time and location I travelled alone. The hospital was easy enough to find, and parking was abundant and free. Always a good start. I arrived a little early and buzzed the bell to let them know I was there. The nurse had a quick chat with me, as they were concerned about some bleeding I’d had previously, then I had a short wait until my turn. I apologised profusely about it being my ‘time of the month’ but they assured me if it wasn’t an issue to me it wasn’t to them. 

At the time of the test another lady came to collect me. By this point I must have looked like a dear in the headlights. Again she questioned me about my bleeding. She was also very reassuring about the upcoming test. In total there were three very kind and comforting women looking after me. 

For the test itself you change into a gown and then empty your bladder. Any metal must be removed for the scan and it’s advisable to leave your valuables at home. Then you enter the scan room and lay on your side on the scanner. 

 

Looking #hospitalglam in my gown.
 
I had two women in front of me and one behind, at the business end so to speak. The two ladies in front kept me chatting and relaxed whilst the one behind filled me up. In total she put 600ml, of what turned out to be the gel used for ultrasounds, inside my back passage. The aim is to fill you up to just around your sigmoid. Honestly, the srynges looked quite scary, but it didn’t feel too bad. The nozzles were small and they had been put in warm water to heat up the gel so it was body temperature. The sensation was definitely strange, and mildly uncomfortable. But not painful. Every now and again it would make a popping noise when air trapped in the srynges would pass into my bowel. That felt odd, but again not painful. 

You then carefully roll onto your back and a cushioned plastic ring is placed under you to collect what you expel. You’re also given a headset to protect your ears. A tray thing called a coil is placed over your abdomen. This helps get better pictures. 

At this point the ladies all left the room and I was popped into the scanner. My head was pretty much completely out, so I didn’t find it claustrophobic. First off they took lots of scans just with the gel inside me. Then I had to push as if I was trying to release it whilst keeping my bum clenched. This sounds a lot more tricky than it actually is. It takes a bit of thinking about, but it’s nowhere near as hard as patting your head and rubbing your tummy at the same time! 

At this point the lady who filled me up returned. She told me the time had come and ran through what I needed to do again. I’d be told to release and then I just had to push the gel out. Easy right? Wrong. For me this was the most difficult part of the test. I pushed and I pushed and I pushed. I swear I pushed harder than I did in labour. My veins bulged. My muscles strained. I even saw stars! But that gel was not moving. Eventually I shifted a bit of it. But only a bit. This part of the test apparently lasts two minutes or so. But it felt like much longer. 

Afterwards my lady returned to tell me what I already knew. I had failed in my task and was still full to the brim with enough jelly to cater a children’s birthday party. So after a quick clean up with the wipes provided I toddled off to the loo to evacuate the rest as best I could. Then it was back on the scanner for a final few images and that was that. Scary test over. 

Honestly the fear of the test was much worse than the test itself. I have been left with some discomfort the day after. But I think that’s mainly because I really went to town trying to ‘release’.  I’ve strained just about my everything. If I have any advice it would be not to push so hard that you feel like your eyes are going to burst from their sockets. Otherwise it’s really not too bad. Of all the tests I’ve had this is one of the few I wouldn’t be too upset if I had to repeat it. 

I hope that if you’ve got this test coming up I’ve helped ease your fears a little, and I wish you luck with your treatment on the whole.