I'm not new - I'm sure some of you remember me, but I'm back after a long absence. I'm currently in hospital, so I'm back because I'm very bored and have free wi-fi.
I'm on stoma number two now, after emergency surgery last April. I love my new stoma even more than the first. This one has only blocked once so far, and hasn't disappeared back into my stomach like the last one!
I'm in hospital now to gain weight. I'm the most underweight patient the hospital has ever had - they didn't think my BMI was "compatible with life". They also couldn't get over how much I can eat and not gain weight. They had people watch me 24/7 - even in the bathroom - to ensure I didn't have an eating disorder and wasn't secretly making myself sick or whatever. They very quickly learned to trust me, because I have nothing to hide.
My small intestine, stomach and oesophagus were very inflamed so I've been on prednisolone. The prednisolone gave me tons of energy and made me a bit euphoric, so coming off it has made me feel rubbish by contrast.
I've had a load of tests and have a load more to go - I have unique medical problems besides Crohn's and am proving a medical mystery yet again.
I've been in hospital a month now and still have a way to go - I need to reach my target weight, and the weight is going on now, but very slowly. They tried an NG tube, but it upset my stomach so much they had to stop it.
My surgeon wants me on TPN, but unfortunately I'm not under his care this time - he was just weighing in with his opinion when he heard I was back in hospital. I love my surgeon and would love to follow his advice, but I also desperately want to get home and I don't think I'd get TPN out of hospital. So I'm doing it through food and supplements.
I'm not too sure about the consultants and dietician who are in charge of me this time - they're nice enough, and taking it all very seriously and - vital for me -, believe now that I haven't lost weight deliberately and really was eating quite a lot before I came into hospital (now I'm eating a ridiculous amount of food), but a lot of the time they say they don't know what's going on with me. I don't want to do them any injustices - I appreciate that they are honest that they don't know much about my illnesses, and if they were seeing me as an out-patient I'd be happy enough, but them keeping me here, insisting I stay in hospital, when their tests may well not reveal anything, and it's very unlikely they'll find a problem and fix it, is very frustrating, and sometimes I feel I'll be here forever, though my weight's up a good amount this morning so it doesn't feel quite so impossible for the moment.
My stoma nurses popped in to visit and load me up with some new products to try (I have some great recommendations for products which I'll try to post in the stoma forum at some point), and my GP has been speaking to me regularly on the phone. The nurses and other staff on the ward - from the cleaners to the housekeeping staff to the people who were employed to watch me to make sure I was being honest about how much I was eating and wasn't deliberately causing weight loss - have all been lovely.
But I'm desperate to get home and miss my baby (my dog ) so much.
So I'm here because I have a lot of time to kill and because I'd like to talk about all the medical stuff I have going on, and have a lot more medical stories to tell.
I'm on stoma number two now, after emergency surgery last April. I love my new stoma even more than the first. This one has only blocked once so far, and hasn't disappeared back into my stomach like the last one!
I'm in hospital now to gain weight. I'm the most underweight patient the hospital has ever had - they didn't think my BMI was "compatible with life". They also couldn't get over how much I can eat and not gain weight. They had people watch me 24/7 - even in the bathroom - to ensure I didn't have an eating disorder and wasn't secretly making myself sick or whatever. They very quickly learned to trust me, because I have nothing to hide.
My small intestine, stomach and oesophagus were very inflamed so I've been on prednisolone. The prednisolone gave me tons of energy and made me a bit euphoric, so coming off it has made me feel rubbish by contrast.
I've had a load of tests and have a load more to go - I have unique medical problems besides Crohn's and am proving a medical mystery yet again.
I've been in hospital a month now and still have a way to go - I need to reach my target weight, and the weight is going on now, but very slowly. They tried an NG tube, but it upset my stomach so much they had to stop it.
My surgeon wants me on TPN, but unfortunately I'm not under his care this time - he was just weighing in with his opinion when he heard I was back in hospital. I love my surgeon and would love to follow his advice, but I also desperately want to get home and I don't think I'd get TPN out of hospital. So I'm doing it through food and supplements.
I'm not too sure about the consultants and dietician who are in charge of me this time - they're nice enough, and taking it all very seriously and - vital for me -, believe now that I haven't lost weight deliberately and really was eating quite a lot before I came into hospital (now I'm eating a ridiculous amount of food), but a lot of the time they say they don't know what's going on with me. I don't want to do them any injustices - I appreciate that they are honest that they don't know much about my illnesses, and if they were seeing me as an out-patient I'd be happy enough, but them keeping me here, insisting I stay in hospital, when their tests may well not reveal anything, and it's very unlikely they'll find a problem and fix it, is very frustrating, and sometimes I feel I'll be here forever, though my weight's up a good amount this morning so it doesn't feel quite so impossible for the moment.
My stoma nurses popped in to visit and load me up with some new products to try (I have some great recommendations for products which I'll try to post in the stoma forum at some point), and my GP has been speaking to me regularly on the phone. The nurses and other staff on the ward - from the cleaners to the housekeeping staff to the people who were employed to watch me to make sure I was being honest about how much I was eating and wasn't deliberately causing weight loss - have all been lovely.
But I'm desperate to get home and miss my baby (my dog ) so much.
So I'm here because I have a lot of time to kill and because I'd like to talk about all the medical stuff I have going on, and have a lot more medical stories to tell.