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Story since April

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 remember you! I am so sorry that you are in hospital. Glad you like your stoma, I had one for three months while my insides healed from the resection. I didn't mind it at all. I can relate to having free wifi in the hospital and being bored. You go ahead and give us updates and let us all know how your doing.
 

afidz

Super Moderator
Welcome back! I remember you saying that your stoma disappeared, and I had been wondering about it ever since, glad you are getting along with the new one. Hopefully you can gain enough weight to go home soon
 
Thank you both for replying. The first stoma disappearing was an odd experience. With all my other surgeries I had so long to prepare, but this one all the stoma output had nowhere to go - some of it started coming out rectally (which was like a nightmare, because the reason I had a stoma in the first place was to stop all the horrendous rectal problems I had, and to go back to that when I thought I'd never have to deal with it again was horrible). Then some of the output started going backwards, and if it had been left much longer it would have had nowhere to go at all, so I had my first experience of emergency surgery. But since that surgery went so smoothly, and my new stoma has caused no problems so far, I think in a way it was ok to not have to go through all the anxious waiting that occurs in the build-up to a planned surgery!

My new stoma is an end ileostomy, rather than a loop ileostomy, so now it's physically impossible for me to pass anything rectally again, (at least I hope it is!) which is a comforting thought, and I've had supports put in to my abdomen to stop this one collapsing. I'm glad right now, because since I've been in hospital this time, and eating so much, for some reason all the food is causing me terrible "phantom" feelings of need to defecate the usual way, which I'd never experienced before. But putting up with phantom pains will be worth it when I can gain enough weight to go home. I have three and a half kilos to go. I know it doesn't sound much - in fact typing it now, it seems like very little - but it's been such a struggle, and I've had quite a few stalls in weight gain already, so it feels so far off at times.
 
I'm home from hospital now - a lot sooner than I expected. I didn't make my target weight, but I saw a different consultant, who felt that I am so healthy (in relative terms) despite being underweight, that I needn't take up a hospital bed. (And I must say I agree with him!) I was gaining weight slowly in hospital, not sure how it's going to go now I'm home, but at least I can get whatever food I like here, which has to make it easier!

So all I really learned from the admission is that I need way more calories than everyone else to maintain or gain weight. The doctors have of course had patients who were too sick to stop losing weight before, but these were always people with some obvious or acute problem going on - they are too sick to keep food down, or they have such severe diarrhoea that everything is running right through them. They have not had a patient like me, where my stoma output is pretty normal, and I've not vomited at all. Despite all my digestive symptoms, my system is basically tolerating food. They did find inflammation with endoscopy, my calprotectin is raised (I don't know the exact number), and I was running a temperature on and off throughout the hospital stay, but after many, many tests, there was nothing to indicate I should need so many calories. My surgeon suggested I may have some neurological problem causing muscle wasting, as occurs in motor neurone disease.

But a lot of things have been ruled out, I have no deficiencies and my electrolyte levels (whatever they are!) are stable, and an ECG showed my heart to be functioning fine. So I'm well enough to be home again! I have more tests scheduled to have as an outpatient, but I doubt they're going to find a solution to my weight problem.
 
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