Thursday, 23 February 2012

Holding my own.

Hi everyone, Lots has been happening over the last month and its hard to remember everything but heres a run down of where I'm at right now. The tube feeding isn't working...by that i mean my body isn't tolerating it. We initially thought that my recent pain issues were related to my surgical tube but after having that removed and having a naso jejunal tube placed, I'm still getting pain. So we are left with no option but to go to Manchester for assessment for TPN (IV feeding). This is not a good place to be and I'm finding it hard to accept. I'm really down about it all and just wish that for once something would go my way! I'm waiting for an appointment to go over there but my GI said it could take up to 6 weeks. It will give me time to get used to the idea but it also means that I'm going to be in a much worse place when I do finally get there. I am back down to 45kg, not my lowest of 42 but I'm fast approaching that now. I still have my naso jejunal tube but I'm only getting 300 calories a day through it at the moment. My dietitian thinks I should be in hospital but I know my body well and for now I'm managing. I'm also waiting for my surgical review for my gallstones. My appointment is towards the end of March but my GI went over it a little when I saw him on Monday. He said he will recommend that they remove my gastric stimulator and do some more biopsies when they do my surgery. This was a bit of a shock because I hadn't given up hope on it working yet! Obviously he thinks that we have tried it for long enough now, I just wasn't expecting it, especially after my last adjustment when the rep told me that there were a few other settings they could try. I feel like I went through it all for nothing and just have a tummy full of scars and holes for nothing. Now I have to face more as a result...that wasn't supposed to happen, I was supposed to get better! I always knew that it was a possibility but at the same time I thought I was doing the right thing. I struggled to make the decision to go ahead in the first place and once I had committed myself I was determined that it would work for me. It turns out it doesn't matter how determined you are when your body has other plans!

Saturday, 18 February 2012

Lost

Hey guys, finally I think I'm in the right frame of mind to put some of my thoughts and feelings into words. I need to get myself together and sort this mess out! My question is, how do you really express how you feel when you don't understand yourself? That's been my problem this week. My usual course of action when faced with a new Gastroparesis issue is to read...read and read some more. It helps me to understand my body and what processes are going on in there to make me feel so utterly rubbish. However, I have found recently that I can't bear to read one more article about the benefits of gastric pacers and domperidone. If they were really that good we would all be doing cartwheels and eating chocolate cake! In reality, it doesn't work for everyone...but know one knows why. This becomes a big issue, especially when explaining your illness to someone new. Well why isn't all that treatment you're getting working? Why can't you just eat more? Why don't you try and exercise that'll help! Have you tried this that or the other...really? Then there's my personal favourite well you were fine before...what changed? My answer....I DON'T KNOW, I DON'T KNOW, I DON'T KNOW! Today...I really don't care why or how, I just NEED to feel better. The latest problem I'm facing is that the Naso jejunal feeding isn't going well. I had pinned all my hopes on getting the surgical jej removed to get rid of the pain but alas...after starting the feed the pain has returned. It's so hard to keep going when everything keeps going so horribly wrong all the time. You just go through the motions of one procedure to the next always hoping that this time you'll make some headway. My next appointment is on Monday, I've spoken to my GI already and I know what's next, I just need to talk some things over before I psych myself up for the next step of my journey. I'll post soon and let you know what's happening. For now I'm just concentrating on keeping my head above water x

Sunday, 12 February 2012

Bad Times

I'm feeling pretty miserable at the moment and don't feel that I should really put it into words right now. I'm trying to stay positive but it's impossible to be positive all the time. Apologies if I'm late in replying to any emails, I'll get back to you on my better days xxx

Wednesday, 8 February 2012

My new feeding trial.

Hey guys, Just posting to let you all know that my naso jejunal feeing tube is up and running. It was all done early this morning but it's taken all day for me to get up onto a ward and be admitted fully. I don't really know what the plan is yet but will be seeing my GI tomorrow. I'll be sure to fill you all in on the details tomorrow. We have just re- started the feed this evening at 10mls an hour with a view to increasing it by 5mls an hour per day after that. I'm already feeling uncomfortable with it as I haven't been to the loo in weeks so everything is tight and sore. I'll be so glad when they finally pull out my surgical jejunostomy tomorrow! Maybe that will help x Here's hoping!

Tuesday, 7 February 2012

Waiting...

Hi guys just thought I'd stop by and scribble a bit before tomorrow. I'm going back to hospital in the morning for removal of my jejunostomy tube and placement of a new nasal jejunal tube. We are testing to see if the pain settles down with the surgical tube out of the way. If things go well and I tolerate the feed I will be having a PEG tube with jejunal extension. I'm not sure what the plan is yet, I'm sure I'll find out tomorrow. I'll try and post tomorrow evening to fill you in on the details.

I've not been too good this week pain wise and will be so relieved when this tube comes out!

Here's hoping this new plan works better xxx keep your fingers and toes crossed for me xxx

Saturday, 4 February 2012

Where do we go from here?

Hello! Guess who's home!!!!!!!!!! What a week it's been. I've been on a real roller coaster ride and my head is spinning a little. Forgive me if this post is a little erratic but so much has happened my brain hasn't taken it all in. I suppose I should start with where I left off on Wednesday. So...Right, the CT scan results came in on Thursday, it was my GI's surgical reg who came to speak to me. I was relieved that it wasn't Mr Ego because I feel I can talk to my GI team more freely, they are much more approachable...and dare I say human lol. The result of the scan was clear! So I'm left in the position that, yes, I don't need surgery...but also, what do we do now? It is looking more and more likely that I now have visceral hypersensitivity in my small bowel too. Which is not so easily overcome. The adjustment I had to my pacer earlier this week has not made any difference yet but it can take months to start working effectively. As promised the specialist nurse returned today, along with the Medtronic Rep (pacer guy). They have increased the voltage again and are also arranging for me to see them in clinic for a follow up in a month or so. I asked about getting a registration card for my pacer, which I should have had by now, so that's another little issue resolved. I greatly appreciate everything they are doing for me, it's so comforting to know that they're not giving up on it, which gives me hope for the future. I re-started the feed on Thursday morning and sure enough, by the evening, the pain had returned. I also had an awful migraine to boot. The feed was only running at 10mls an hour so this is not a good sign at all. The original plan was to start the feed along with some IV Pabrinex (vitamin compound) to prevent re-feeding syndrome...after being starved for a week, while resting my bowel. Then, aim to go home on Saturday if all went well. However, due to the recurrence of pain issues we have had to change the plan. When the surgical reg came to see me this afternoon. We discussed the issues I was facing and he went to discuss it with my GI. I knew it wasn't looking good but what's new these days! It feels like one crisis to another all the time. My GI came up to see me after hearing about the recurrence of pain after starting the feeding process again. We talked it over at length, and decided that I can't possibly continue to use the jejunostomy tube when it causes so much pain. This is narrowing down my nutritional options again and he said that we really needed to consider moving on to TPN (Feeding nutrients into the blood stream). My heart skipped a beat when he said it. I've tried so hard to fight tube feeding all this time and now even that is failing! I felt like it would be giving in...don't ask me why...I don't understand myself sometimes...it just seems like if I do that, I have given up. He explained that I would have to move to another hospital (much further away) to be assessed and get everything set up. It would also mean being away from my family for even longer. I felt so desperate but deep down I knew I had to do what was necessary to get well again nutritionally. I would like to think that I could persevere with the jej tube and just keep taking the pills, but it's no life when you have that much pain every day. I agreed to go ahead with what ever he thought best, I really need to move on from here and if that's the way forward then so be it. He went to make a phone call to Manchester to try and arrange something for me. He came back shortly after, with a big smile on his face. He had explained the situation to his colleague in Manchester and they had seen similar cases to myself before. They said that the pain may be caused by the tube being pulled down into the small bowel. Explaining why the pain had been so acute! So now we have a totally new plan and no trips away. He said I could go home for the next few days to be with my family. He has arranged for me to go back in on Wednesday to have my jej tube removed and have a new naso jejunal tube put in instead. This will test to see if I can tolerate the jejunal feeding without the surgical jej tube there to cause problems. If that goes well they will place a new J-PEG (tube that goes into the stomach but has an extension which runs into the jejunum for feeding). The poor dietitian had been backwards and forwards all day trying to sort out various issues with my feeding regime. She has put me back onto the energy feed at 10mls an hour and included 2-4 hourly flushes of 25-50mls. The original plan was to try and increase the feed rate by 5ml/hr per day but after hearing the new plans she said not to worry about it too much for now until we get the tube issues sorted out but try and have some bolus doses of calogen through my tube instead of continuing to push with the feed. I had to breathe a huge sigh of relief!...phew, I felt so much better knowing that there was a possibility of avoiding TPN. My family were also delighted to hear that we still had options, they had been worried sick about me all week. I feel so guilty for putting everyone under so much stress all the time. I think that's the hardest part of being ill. You can see what it's doing to the people you love but there's nothing you can do to make it better for them. My children suffer the most and have had to do a lot of growing up recently, it's been so hard on them. So I'm writing this from my comfy chair at home! It started snowing here this afternoon and everything looks so magical. I enjoyed watching my children playing in the snow out of the window, perfect! What a welcome home! I thought it best to tell them I was home on weekend leave so that they fully understand that mummy will be away again next week for a while. I think it was a good move because they won't think that mummy is going back because she's got worse again. It's alway hard to know how to approach these issues with little ones. I guess all I can do is reassure them while I'm here and make the most of some quality time together.

Wednesday, 1 February 2012

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