I, too, have high output from my ilestomy due to crohn's disease (have had ileostomy since Aug. 2005). I am still in the process of trying to figure out how to stay properly hydrated. I can drink enough Gatorade (alot!!) to stay out of hospital but I have problems maintaining potassium, magnesium and calcium. I do take potassium chloride orally and get monthly b-12 injections (and many other Rx drugs). Lacking some of these essential electrolytes can really have an adverse effect on overall well being. Although my surgery and ostomy healed fine and I have had minimal problems with my appliance, I also have not felt "well" physically. The Drs. and I are still trying to find ways for me to maintain all of my electrolytes. I, too, get up at least 2 times per night to empty and I make sure I don't eat before I have to go out in public and before bed. I take codeine and lomotil to try to slow down my output...it does help somewhat but makes me nauseated and uncomfortable. Slowly we have been able to work out some kinks. I also only have a part of my small intestine. The part that is missing (most of the terminal ileum) is critical for absorbing many needed vitamins and nutrients. Because so much of the small intestine had to be removed, my stoma is actually on the left side of my body. Dr. wanted to preserve as much as possible so he placed it there rather than on the right side (less distance). Please make sure your doctor is checking for these critical electrolytes...some are not part of a "regular" metabolic panel and have to be requested specifically (like magnesium, b vitamins and others). This may not help with the high output but may help with overall improvement. I am sorry you are going through this and will keep you in my thoughts and prayers. (sorry for the long reply!)
I understand the feeling about knowing another person like us is dealing with some of the same issues. My weight right now is at the very low end of "normal" for my size/height since 2007, before that I was underweight. Most of my caloric intake is from Gatorade(electrolyte replacement sports drink), is this available to you in Scotland or maybe a similar drink? Here (United States) we also have pedialyte - an electrolyte replacement intended for ill babies/children(but anyone can drink/buy it!!) I have to drink so much Gatorade that it really dampens my appetite in fact sometimes I have to force myself to drink it. I literally drink it steadily from the time I get up until the time I go to bed at night. I, too, have nausea in varying degrees. One thing I have found that helps w/nausea is pretzels eaten in small bites sloooowly. My current obstacle is magnesium. I have tried the oral supplements but my remaining digestive system is not able to absorb it. My Dr. is looking into a possible transdermal patch. Magnesium is not stored in the body like b-12 and some others so it is something that needs to be replenished daily rather than a shot monthly. I have had TPN/IV fluids in hospital in the past and hope I don't have to "hook up" at home to get these vital nutrients but we will see. My husband and children tell me I'm a "work in progress". I wish the "progress" part would hapen soon!
We have alot of similarities! I am also on disability (through our government's Social Security). I also receive a monthly disability benefit from my former employer. I was initially diagnosed with Crohn's disease in Jan. 1980 (I was 19 yrs. old, married w/a 5 month old baby). Within one year I was developing fistulas and had many outpatient surgeries for them. I was able to work (thank goodness for sick days) until 1998 when I had my first "big" surgery - subtotal colectomy with anastomosis. They removed a portion of small intestine (the terminal ileum) and almost all of the colon and resected. I did go back to work for 7 months but was so ill I ended up on disability. I see I have writen another short novel! Please take care and keep us posted on how you are doing.
It sounds as if the callogen that you mentioned is like what we have here in the States called Ensure. It's a high calorie milk-like drink that is recommended for added nutrition, especially if you have a hard time eating solid food (which seems to be an ongoing problem for you). This has helped me gain weight in the past and I still occasionally drink it. The Gatorade I referred to is a flavored water based electrolyte replacement drink consisting of water, sodium, potassium and sugars (about half the sugars found in soda). Do you have something similar available to you? Maybe you could try this along w/the callogen as well?? This combination has made me feel much better although gaining weight was not easy and very slow going. Maybe this is all old news to you but I thought it worth a mention. Hugs to you and I hope you can find improvement soon!!
Between my government disability (Social Security) and the disability from my employer all my ostomy supplies are covered. I have a co-payment on the Rx drugs - I pay US$10.00 per Rx for generic, US$25.00 for name brand. All but one of my meds is generic. The co-pays add up to US$70.oo-US$90.00 per month. My medical is completely covered. Thank goodness for that as I know the full price for Rx and supplies is far greater. I really do understand about being so thin and not finding clothing. I am a size 2-4 petite and anything smaller is very difficult to find. I have had to buy clothes from the "girls" dept. When I was at one of the lowest weights I had someone say, "I wish I had the same problem." I realized they didn't understand the severity of the situation but I was speechless.
Regarding the Gatorade...you could try googling it to get more info about availability and use. It is available here at gas stations, supermarkets and wherever drinks are sold in many flavors. The cost is about US$1.00 per quart (946 ml). Just under US$2.00 for a bottle double that size. Please let me know what you find out from your stoma nurse and Dr. I'm hoping something is available to you "over-the-counter" (w/out Rx or hospitalization). Gatorade is also available in powder packets to be mixed with water and has the same electrolytes in it. Each packet makes 946 ml and costs a bit less than premixed bottled. I keep a number of these packets on hand in case I run out of bottled. I take Gatorade with me wherever I go. So far, it has been the only thing that has kept me from being hospitalized for dehydration (again)...I learned that the hard way!! I need to drink ALOT of it! I would be willing to mail you some of the packets to try if you can't find something there.
As far as being underweight...I felt horrible and weak...still do sometimes. Hang in there and keep trying. Gaining even a little weight can spark an appetite although as you know it is easier said than done. Keeping you in my thoughts and prayers!