I’ve not blogged since March because I’ve been in hospital and not been up to it. I came into hospital mid March for a planned admission to reduce or come off completely my opiate medications. I had seen one of the gastro consultants in clinic who suggested that the high doses of fentanyl, codeine and morphine could be slowing my bowel down significantly and be either causing or contributing to the bowel obstructions and problems I had been having over the last 6-12 months. I knew that it wouldn’t be easy to come off them but I was willing to give it a go.
Within the first week I had stopped taking codeine and reduced my fentanyl patch from 100mg to 75mg. The plan was to reduce it in 12.5mg steps every 3 days when the patch needed changing (as the doses the patch comes in are 12.5mg increments). I found the first 2 weeks pretty easy, had no withdrawal symptoms and thought that I would continue to sail through. How wrong I was!
Once I dropped below 50mg I started to really feel it. I had terrible diahorrea, felt sick and lethargic and didn’t want to get out of bed. I don’t think it helped that at this point my Hickman line blocked and I had to have a new one put in. When I went down to have the new line I told the doctor in Interventional Radiology that I needed to have sedation. I had a line inserted years ago without sedation and it was incredibly painful and I didn’t want to go through that again. I was assured sedation would be given but it wasn’t and by the time I was going to ask why they hadn’t given it to me they were almost halfway through so I thought I would just continue to grit my teeth and get on with it. Looking back now I wish I had spoken up; when I got back to the ward I was shaking and the nurses said I was as white as a sheet. The whole experience was extremely traumatic and incredibly painful. This was my 12th line in 7 years so my chest wall is extremely scared so it makes the line insertions harder and there is no way I will ever go through that again. When the time comes for number 13 if there’s no sedation given at the start then the procedure will not start!
The new line continued to be sore and bled for days afterwards which was unusual for me. I also had pain when my feed was being infused so the nurses slowed the infusion rate right down so my 2 litre bag was taking 20 hours to go in instead of the usual 12. I also developed what can only be described as something like restless leg but in my right arm, the side the new line had been put in. The pain in my arm and my Hickman line was unbearable. I couldn’t sleep and would roam the hospital corridors at night shaking my arm to try and get the pain and horrible sensation to go away. The only thing I found that helped was having the blood pressure cuff inflated so one night when the pain was really bad the nurse left the blood pressure machine in my room and I just reinflated the cuff every minute.
The combination of the problems with my line, the arm and the withdrawal symptoms were so bad that one day I couldn’t stop crying and was so, so low. By this point I had been in hospital for about 4 weeks and I was desperately missing Hubby and the kids as the no visitor rule is still in place. The nurses were so worried about me that they called DPM (Department of Psychiatric medicine) and 2 of their nurses came up to see me and check I wasn’t planning on throwing myself out my window or anything similar. They concluded that I was extremely sleep deprived and having a very normal reaction to a difficult set of circumstances and they prescribed me some sleeping tablets. Waking up after getting a nights sleep was amazing. I was still in pain but I found that I was mentally able to cope with it.
I’m proud to say that after nearly 5 weeks I was completely free of all opiates but was still in hospital because of the pain I was having with my Hickman line. The ‘restless arm’ disappeared as suddenly as it had started and was put down to being a strange withdrawal effect. The pain in my Hickman line was decreasing and the speed at which I was having my feed was increasing and we got it to 16 hours which would be manageable at home.
After 5.5 weeks I was discharged and I literally skipped off the ward and down to my Dad who had come to pick me up and take me home. I was so, so happy to be going back home to my family, to see the dog and start living life. I had spent the last year shielding and was excited that the restrictions would soon be easing and I would be able to see friends and family again. That evening my parents popped down to see my and we sat (socially distanced) in the garden and made plans to go to a garden centre and to walk the dog. To celebrate my homecoming the kids asked for a takeaway and despite the fact that I was no longer having any food and was on full TPN feeds I was happy to oblige and watch them eat! I was just so joyful to be sat on the sofa watching tv with them.
But then as I went up to bed I started to feel quite poorly and within minutes of being in bed I had to rush to the toilet to be sick. And once I had been sick it kept coming and coming. Hubby and I sleep in separate bedrooms because he snores so badly and I’m up and down to loo so often that we keep each other awake, but I was feeling so poorly that I rang him and asked him to get into bed with me to keep an eye on me through the night. By lunchtime I was so unwell and vomiting almost continuously that Hubby decided to ring the ward and speak to the nurses for some advice.
The nurse in charge told him that he needed to bring me back to hospital and that they had a bed for me on the ward (ironically the same one I had left just 24 hours previously!). But instead of going straight up to the ward like I normally would they wanted me to go into A&E to be checked incase I needed any immediate intervention. Hubby had to almost carry me to the car because by this point I was so weak and so poorly. I begged him to ring an ambulance but he didn’t want to wait for them to come- I think he was so worried about me. I lay on the back seat of the car throwing up into the sick bowl all the way. When we reached the hospital he wheeled me into A&E and at the moment usually nobody is allowed to go in with you but he said there was no way he was leaving me. He booked me in at reception where they immediately called a nurse who took one look at me and wheeled me straight in.
They got me onto a bed, did my observations and at this point kicked Hubby out. He said he went and sat in the car and didn’t know what to do with himself. I was vomiting constantly and every time I was sick I had uncontrollable diahorrea. Luckily the tena pads were soaking it up but it was horrendous. Within 5 minutes the A&E doctor came to see me, said he thought I had a bowel obstruction and that the best place for me would be the ward. Luckily one of my favourite nurses was the nurse in charge that day and she let Hubby onto the ward to sit with me. She later said that she had never ever seen me so unwell. I was sent for an emergency CT scan but when the porters came there was a problem with my bed and they had to get me a new one. By this point I was so unwell I couldn’t manage to stand up and take the two steps needed to move from one bed to another and ended up being PAT slided. When I went to have the CT scan the radiographer refused to scan me because I was being sick so much she wasn’t confident I could lie on my back long enough for the scan to take place and that if they put me in the scanner I could end up choking on my own vomit and need respiratory assistance.
So I went back up to the ward and was given IV antisickness medication and strong pain relief. I can honestly say that apart from coming round from a surgery I have never felt so unwell. I did actually wonder if I would make it through the night I was feeling so, so bad. The sickness finally stopped but after vomiting non stop for the best part of 36 hours I was exhausted. I managed to have the CT scan later that night which showed that all my small bowel was inflamed and dilated. The doctors were also worried that I wasn’t passing urine so they put in a catheter and also an NG tube.
The NG tube goes down your nose and the back of your throat and drains off the contents of your stomach which can’t pass through your bowels as normal. It’s not nice having it inserted but once it’s in you do start to feel better. The first few days of being in hospital I was too poorly to even answer my phone or send a text so Hubby was having to ring the ward and get updates from the nurses. I can’t imagine what it must have been like for him because if the situation were reversed I would be going crazy. The catheter stayed in for nearly a week and the NG tube for three. When that came out it felt soooo good and I could finally blow my nose properly!
Every week there is a MDT meeting. This Multi Diciplinary Team meeting is where the gastro consultants, ward sister/deputy sister meet with the surgeons to discuss complex cases. Apparently I’ve featured quite heavily in many recent meetings. My gastro consultant feels we’ve reached the end of the line in terms of managing my bowel issues and that surgery should be the next step. The surgeons are refusing to operate as they don’t know what exactly is wrong with me. Apparently they reviewed my entire medical history and noticed that I was diagnosed with endometriosis last year. They thought that this could be the cause of all the problems so wanted an ultrasound to see if that’s the case and also an MRI of my small bowel.
Apparently they don’t normally do MRI’s of the small bowel to inpatients as it involves drinking 2 litres of liquid prior to the scan and most inpatients can’t tolerate it and therefore can’t have the scan. When I went down for mine after a few mouthfuls I was being sick so the radiologist called the ward doctors down for them to put it through my NG tube. This was a pretty unpleasant experience and we managed to get about 1.4 litres down but I just couldn’t manage anymore. Luckily they said that was enough and I managed to have the scan. The ultrasound didn’t show any significant clusters of endometriosis but then I have been having an injection that puts me into an early menopause in order to control it. The MRI scan showed that there was a part of my small bowel, just above my j pouch, that looked worse than the rest so they decided I needed an endoscopy for them to take a closer look.
I had only just had a ‘camera up the bum’ in February this year but they decided that they needed to do another to see if anything had changed. I opted for sedation because it was either that or nothing. The last one I had wasn’t in the main hospital it was in the treatment centre across the road and they offer gas and air which I found made the procedure less uncomfortable and I would have had that again if I could. They gave me two doses of sedation but it didn’t have much effect but luckily they weren’t going too far in and it was bearable. Just like the scope in February it showed that crohns was not the cause of the inflammation and dilation of the small bowel so the gastro team were left scratching their heads again as to what is causing all these problems.
At the MDT following all these tests my gastro consultant stressed again to the surgeons that there was nothing else he could do and this time one of them said he would be willing to operate. Because he had an idea of which part of the bowel was problematic he had an area to aim for and he felt that now he could perform a surgery that might benefit me. A couple of days after the meeting the surgeon came to see me and we had a very long chat about the pros and cons of having the surgery. Because he has no idea what is wrong with me so would have to open me up and see what’s going on in there.
If it was endometriosis attached to my bowel then he may be able to remove some of it, he may not. Apparently it would have to be a pretty big cluster to show up on the ultrasound so it could still be the cause. The other cause could be adhesions which is internal scar tissue which forms as a result of past surgeries. Same thing as with the endometriosis, if they were the cause he might be able to remove them, he might not. But even if he did remove them the bloody things grow back. The other thought he could be the issue is that my bowel is twisting and that’s what’s causing the obstructions and the pain. He did say that he’s almost certain that I would come out of the op with a stoma regardless of what he finds and that would relieve the problems if it was twisting that was causing the issues. But he did say that he could operate on me and I end up being no better off or it could even make things worse, so it’s a big decision.
He wants to meet with Hubby to talk to us both because it’s a big operation with high risks involved. Because of all my past surgeries my abdomen is a complete mess so it would make the surgery very difficult and he wants us to be aware of all this before we make a decision. One thing I will say is that he’s not rushing into surgery lightly and wants Hubby and I to take our time deciding what’s right for us and our family. Usually surgeons are arrogant and desperate to cut but he seems a really genuine chap and I do trust him. I have to say that the thought of having more surgery terrifies me especially with it being a step into the unknown. I would have to consent for them to pretty much do anything to me and thinking about going under a general anaesthetic not knowing what I will wake up to is frightening.
The idea of having a stoma again doesn’t fill me with much joy either. I’m not bothered so much by the ‘having’ of a stoma- at the end of the day for many people they are life saving and give them back some quality of life but the whole reason I had j-pouch surgery was because my stoma was so problematic. The first stoma I had used to block up and cause me all sorts of pain and other issues despite having 2 revision surgeries and the temporary stoma I had for 6 months in between the J pouch surgeries was a nightmare to manage. It was extremely high output, up to 6 litres a day used to gush out, and I remember the stoma nurses spending up to 2 hours a day trying to get a bag to stick. I couldn’t leave the house because it would leak constantly and the only way I could cope psychologically was knowing it was only for 6 months. If I had a stoma like that again that I knew was permanent I honestly think I would have a breakdown.
But one thing the surgeon did mention was that one of the other gastro doctors suggested trying me on azathioprine which is an immunosuppressant drug. It’s usually used in crohns or colitis patients when nothing else has worked and although there’s no conclusive evidence of me having crohns (and I can’t have colitis as it only affects the large bowel and I had mine removed in 2009) I wanted to give it a go. My gastro consultant isn’t convinced it will do anything but I feel that I need to know I have tried absolutely everything before agreeing to surgery.
So that’s where we are now. I’m typing this while hooked up to my first infliximab infusion. It’s the newer, more modern version of azathioprine, but does the same job of wiping out my immune system in the hope that if it’s my immune system attacking my body and causing all these issues it will put me into a state of remission.
Fingers crossed this works (although I’m a realist so I’m not holding my breath) because if it doesn’t I’ve got a very big decision to make.
Comments
Post a Comment