Posted 11/6/2015 3:24 AM (GMT -7)
Hi everyone, I'm really sorry for the late reply. My depression got overwhelming and I just kind of withdrew from talking to people at all for the past few months as I couldn't cope.
So after my post above, I kept pestering the doctors, and it turns out that the doctor had reduced my dose of Asacol by mistake, and no-one had corrected it on the computer (and the nurses have to obey the dose on the computer). Even though I brought it up every single time they brought the medication trolley round, no-one sorted it out until the last day-I spoke to a young junior doctor and he sorted it out within a couple of hours (maybe he was still new enough to still see patients as human beings? I don't know).
I was only in hospital for 3 days in the end, it turns out it wasn't a flare-up after all (I did keep telling the doctors and my specialist nurse that I wasn't bleeding or vomiting but they sent me to hospital anyway).
They found out from doing X-rays and a sigmoidoscopy, that I had a partial blockage/narrowing in the area where the pain was (sorry I'm still not sure exactly what it was as I can't get a clear answer from them).
After I was discharged I was supposed to feel better as the hospital doctor told me that the enema (which I had in preparation for the sigmoidoscopy) had 'cleared' everything. I was told to start reducing the oral steroids straight away, which I did.
When I saw my specialist nurse I told her that I felt stupid for not being able to tell the difference between flare-up pain and this partial blockage/narrowing pain (I had also had a lot of very loud, painful gurgling and watery stools). She said that it was normal and that it was a good thing I had gone to hospital or it might not have been cleared.
I was still in a lot of pain for quite a while after that though, I even went to see the GP (everyday doctor for non-UK people) and was examined, he was fairly certain that I wasn't blocked anymore, but said I might have scarring causing me pain.
I had a colonoscopy about 3 weeks ago, the immediate result was that everything is fine, but I don't know about the biopsies yet.
I am now on 2.5mg of Prednisolone, so have almost stopped.
Anyway I am still signed off but have not had much pain for about the last week, so fingers crossed.
iPoop-Thanks, that was good advice.
Dikid-Thanks, I did continue to take my normal dose against the nurses wishes as I did not trust them (as it turns out they had made a mistake anyway). I was very open about it, no choice really as when you are admitted, they take all of your medication off you and lock it in a lockable cupboard by your bed. When they brought the medication trolley they would unlock it to give me some pills, and I insisted that they give me my normal dose, at which point they would remind me that it was against their advice and told me to 'self-administer' the extra pills (basically I had to take the pills out myself and add them to the ones they had given me).
I did ask a couple of doctors, as at my local hospital you see a different one most days, they often do ward rounds in groups of 2-5 ish (some are training I think). But as stated above it took a junior doctor to correct their error.
The feeling of not being safe was as a direct result of them trying to take my Asacol away. I can't really explain it but I get panicky unless it is physically with me at all times (it has to be either in my handbag or next to me on the sofa etc.). Maybe it's a control thing? I always feel that: Medicine(steroids, mesalasines, any drugs really)=Safe and comforting, and Food=Dangerous and scary.
garylouisville-Thank you, I was getting very worried about the possibility of becoming resistant to mesalasines etc., but ironically it turns out it wasn't a flare, and that my colon is very pink and normal and not inflamed.
DBwithUC-Thanks, that's exactly what I thought, if they had discussed it with me beforehand and given me reasons why, I would have been much calmer. But they made an error so there you go.
Honestly though the difference in quality of care on the ward from 2010 to 2015 is shocking-I don't know if the NHS is running out of money or something.
I was also not told what had been causing my pain and symptoms until I asked, and then it was as the doctor was walking away. On being discharged I was prescribed extra medication (temporary stuff and not directly related to UC) and not told why or what it was for (I had to ring my GP and ask them to explain instead).
London Lurker-Thanks, it turns out that they had made a mistake. I did have bloods taken but the only thing I was told was that my calcium levels were too high.
Sorry for the big essay! It was actually a very traumatic experience so I am venting a bit I think! I do feel like I have wasted everyone's time as my colon is actually in good condition at the moment (fingers crossed), and I have also been given steroids and enemas for nothing. But then on the other hand, I have been in a lot of pain for a very long time, and every time that I saw or spoke to the GP, specialist nurse or any doctor, I was very honest, and described my symptoms in detail (so I feel like it's not just my fault). I told them several times that I was not bleeding or vomiting.
As a side note, my friend with diabetes came to visit me whilst I was in hospital, and she told me that the last time she was in hospital (the same hospital), that they would not give her her insulin, and she went into a DKA. She made a formal complaint after she was discharged (But I am too frightened to do that in case of repercussions).
On a positive note my depression seems to be slightly better, as I have a bit more motivation at the moment. I feel like the more I have to think about my UC (for example when I am having a flare), the worse the depression gets and the more my mind just shuts down.