As it’s six months since my last MRI, my consultant suggested we do a new one to check progress or not, as the case may be. Add onto this the fact I have been unwell with some other oddities for the past few months, it seemed like a good idea.
My GP had given me antibiotics a few weeks back and I did think they were helping – the output from the fistula was less and things weren’t looking so angry. My eye seemed to be settling down but I had developed a cold sore from hell on my face! It started off as a spot by my lip and grew into something oozing and angry, just amazing, I’ve never had these problems before and found it quite embarrassing walking around wifh this giant Zit on my face. Anyhow I transgress……..
On Friday the 2nd of February I had my small bowel MRI with contrast. It’s ok, not painful but not pleasant. You have to drink a litre of a carob bean based drink to line your intestines – it actually acts as a laxative which is not great for anyone let alone me. You then have to lie flat on your back for an hour ( painful for me ) whilst you are transported into a coffin like tube . They give you earphones as there is lots of noise as the magnet does its job. They speak to you via the headphones asking you to breathe in for 20 seconds etc. At one point they bring you out for a needle to be put in your arm to administer the contrast. They also give you a shot of buscopan to relax the bowel and warn you it may make your vision go very blurred. On the basis I’m blind as a bat without my glasses, I didn’t notice any difference. After what seems like a lifetime they say ‘all done’ and out you slide. They aren’t allowed to tell you anything but say they’ve had some good images – they like scanning me because I’m interesting apparently. I’d rather be normal and boring thanks.
My increasingly unsympathetic husband sulks that we cannot go shopping 🙀and have to drive straight home. All I want is the security of my little bungalow and a nice cup of tea, whilst watching The Chase, yes I am BORING! The journey home takes an hour and a half and we have to stop at the services as the carob bean does it’s job and makes me quite unwell. We then nearly have a nasty smash ( not his fault ) as a massive juggernaut type vehicle kindly pulls out without looking. Husband is then even more angry whilst I am a quivering wreck……..
A few days later as luck would have it I had two consultant appointments, one scheduled months ago and one for the results of the MRI. Owing to the limitations of the NHS I went private for this MRI as I needed to know what was going on, hence the quick results, I’d normally wait 6 weeks. I saw my first gastro consultant at our local hospital who immediately stopped the antibiotics the GP had prescribed saying how bad they are for the gut and will do more harm than good. She said in the absence of elevated white blood cells, antibiotics play no part in this. I said I did feel better on them and she said well I may do for a little while until all my good gut bacteria were gobbled up and I would feel worse. I told her how upset I feel that there is no treatment for this and I just have to go through life feeling under par. She sympathised but agreed it is a very difficult condition and I am unusual in that there is no obvious cause, without an obvious cause, there is no treatment as such apart from when I get really ill and then I can have antibiotics. Oh lucky me.
So our next appointment is in Cardiff and we travel in silence as the strain of this illness tightens it’s deadly grip. I have to be cheerful and positive all the time to be bearable apparently and I do struggle with this requirement. I was very disappointed at the antibiotics being stopped as I thought they could give me some stability so I could feel better, but this was not to be. We arrive in Cardiff and I see my consultant ( the main man) who is his usual lovely self. He says the MRI hasn’t shown anything new, just confirmed this cavity in the pit of my pelvis which is ruining my life. The cavity is probably attached to the small bowel and the radiographer suggested another scan for more definition. It did say it was no worse and all my other bits and pieces were good, Nothing abnormal detected in kidneys, liver, pancreas etc. No Chrons disease evident. So what is causing this. I am an enigma it seems. He agreed I look run down ( could hardly miss the ZIT). I look tired he said and I should rest. My cousin has an apartment in Tenerife and I’m so tempted sometimes to take him up on his offer of a long long break. Away from the stressful life I sometimes have, but I have commitments to the children who I love so dearly, and I would find it hard to walk away from them. But I am tempted sometimes to do a Shirley Valentine 👏👏
So what else has happened. I’ve spent most of my days on the phone to stoma companies who are helping me find a suitable pouch for the fistula. i potter around the house and see my granddaughter and nephews who make me happy. I watch TV and rest, my husband is returning to work so I’m on my own a lot of the time which is fine by me.
Yesterday was my mother’s birthday. We all went to see her in the home she is in following her brain haemorrhage almost 6 years ago. She was awful. When we got there I could see her shouting at the carer. She looked ill, has lost weight. She cried, I cried. I said to the carer I thought she’d looked pale to which the carer replied ‘‘well when did YOU see her last’’. That hurt, cut through me like a knife. Il admit I hate going there and I know it makes her worse, she sees me and thinks I’ve come to fetch her, I’ve been so down physically and mentally I haven’t been since before Christmas and this particular carer rather nastily reminded me of that. As if I didn’t already know. My sister has been there of course but she doesn’t tell me much as she knows how I struggle with everything at the moment.
The house by the sea dream is heightened, I’d take my mother and hire a carer to help me. She needs 24 hour care but she needs us too and I can’t do it alone.
Off to buy a lottery ticket, I can but dream.