Back in Hospital...Again!

Where do I start? Ok...Last wednesday night I was in severe pain in the area around my jejunal feeding tube. I spent most of the early hours of the morning glued to the computer, desperately trying to ignore the pain. It got to around 5am and after full doses of tramadol and oramorph, the pain was still incredibly intense. Those of you who know me also know how much I hate A & E but in this instance I really had no choice but to go. I was downstairs at home and my hubby was sleeping soundly upstairs so I had to ring the house phone to wake him up because I simply couldn't move by that point. Luckily the children were staying at their grandparents for the night so we didn't have to worry about arranging a baby sitter. Unfortunately my local hospitals are a total waste of time so I had to tolerate the long drive back to Durham where my GI is based. It was the longest car journey of my life, I was in so much pain by this point that I thought my intestines were going to burst! I stopped my feed, thinking that was causing the problem. By the time we got to the hospital I was in a real state. They were very quick to get me in and offer pain relief but at the time it felt like forever waiting for that IV morphine! They quickly got me in for an x-ray which showed that my body was loaded with poo....mmm no smart comments please lol. I was assessed by one of the doctors, who clearly knew nothing about gastroparesis...I told hubby not to bother asking any questions at this stage because I knew they wouldn't be able to answer them for him. I had to laugh when he asked where the toilets were and the doctor said he didn't know! It was a proper "I told you so" moment lol. Anyway, I was admitted to the surgical admissions ward and put under the care of yet another consultant...yes that's 3 now, why they didn't hand me back to the one I saw last week when we found out about the gallstone I don't know...that's the NHS for you, lot's of silly systems that don't really work for the patient. So I had to go over everything all over again with this new surgeon (we will call him Mr Ego). He was very flippant with me and said that I probably just needed a big poo! So I had to endure the joys of having an enema, which incidentally, did nothing for my pain! I was sen by Mr Ego the following morning who seemed not to be bothered at all and just said I should re-start my feed at a reduced rate and see how it went. Great...so he thinks everything is fine, just what I need! However I saw my GI later that day and his concern was very clear. He said that it could be either a structural problem with the jej tube or visceral hypersensitivity of the intestine (The same problem I have with my stomach). He also said I should stop the feed immediately and should be kept nil by mouth and nil by jej for several days to give my bowel a rest. He said they would need to do a CT scan to see if there was a structural problem which could be fixed. He also told me that he would be away at the beginning of the week but his registrar (who is also very nice) would take care of me in his absence. We were heading for the weekend and I wasn't classed as an emergency case so I was put to the bottom of the list for the scan. They kept me comfortable with IV fluids and regular IV tramadol and paracetamol (It's worth mentioning that I'm not allowed a full dose of paracetamol due to my low body weight...something to be cautious of if you are in the same position weight wise!) I was still getting pain between doses at this point but for the most part I was fairly comfortable. Monday came round and another visit from Mr Ego, who just said, we're still waiting for the CT scan and we can't do anything until you've had that. I presumed I would be getting the scan the same day but about an hour or so later one of the junior doctors on the team came to ask me some more questions. When I asked him why, he said that the radiologist didn't think I needed a CT scan at all so I might not get one at all! If you read my diary you will know that this is exactly the same situation I found myself in 2 years ago when this all started and they thought I had gallstones...I never got the scan and now we have just found a huge gallstone sitting in there...2 years later! I was devastated and I had an awful feeling that I was going to get brushed away again and sent home without any answers again! Especially now my GI wasn't there to fight my corner for me! I rang my mum to explain what was happening and she was so mad that she rang the hospital herself to get someone to find out what was going on! They promptly got a doctor from the team to come and explain the situation and he assured me that if the consultant wanted the scan he would get one. By Tuesday the pain had settled greatly and I was needing less pain relief, which is great, but it also made me wonder if whatever was going on had settled down to the extent that it would not show up on the scan when if I ever got one! Today is Wednesday and another flippant visit from Mr Ego! He just said...still waiting for the scan, and left! He went into the corridor...entourage in tow, and proceeded to discus my case within earshot. I heard him tell his minions that he wanted me to have TPN (Total Parental Nutrition) which is where they place a line into the veins near your heart and feed you directly onto the blood stream. Sounds ok in theory but TPN is very bad for the liver and definitely not I was worried sick because I know several people on TPN and although it does solve a problem, but it can cause complications that I would much rather avoid if I can. I admit I have not read much about it because I never considered it was going to be part of my journey. My GI's registrar came this afternoon and said that he had basically told Mr Ego that he was way over the top and we should try everything else before resorting to that. Phew!!!! He then said that he would arrange for the dietitian to come and write up a new feeding regime and also get someone to come and adjust my pacer to see if that would get me eating again. Sure enough, this afternoon, it all happened at once! First the specialist nurse came and increased the voltage on my pacer, Then the dietitian arrived to write up my regime and then FINALLY I got my CT! The CT prep caused another quandary...I can no way drink a litre of fluid within an hour! So my registrar arranged an alternative for me. I had to drink one glass of prep orally and flush as much as I could down my jej tube. I managed half of it but it did leave me feeling very uncomfortable. So, now I'm waiting for the results of my scan in the next day or so...fingers crossed guys! I was supposed to restart my feed tonight but after having the pabrinex (vitamins) needed to prevent re-feeding syndrome, we looked at the regime the dietitian had written...she has prescribed the wrong feed! Great! So now I'm waiting to find out if they will be able to go ahead anyway with the basic feed or whether we will have to wait for the dietitian to return tomorrow to change it. So that's my week so far....I still have a hugely bloated belly and haven't been able to 'go' or even felt the urge, but at least the pain has settled. I just hope that starting the feed doesn't start the pain off again! I'll post when I have any news for you. A massive thanks to everyone for your support and messages on Facebook etc and I'm sorry I couldn't post sooner. I've just got a new laptop and dongle so now I will be able to keep you up to date more easily and once again I'm sorry for worrying you with my absence xxxx