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.