Posted 1/28/2015 4:47 PM (GMT -6)
I understand how you feel. I had stricture surgery at end of October after putting up with it for 6 years. Didn't want to have it done earlier as have such short amount of small bowel left that they thought I would end up on TPN permanently afterwards. So stuck with it until I was having obstructions twice a week and was then rushed in as an emergency in September. I was so ill and lost so much weight (I'm 6'3 and weighted under 9 st 6lbs) that I had to have central line fitted and had TPN for 5 1/2 wks before they would operate. Anyway 6 hours of replumbing later and all sorted. Went home after 5 days and can now eat whatever I want. But.....
Over last 18 months my appetite has been rubbish and everyone just kept saying it was due to the stricture. I was also bone achingly tired and just put this down to the lack of food, Lupus and arthritis and just well, feeling like cack. While I was in hospital I kept saying about my appetite and kept being told it would be back to normal once I could eat again but I need to have 4000 calories a day and said it wasn't the stricture causing this but no one believed me. Well they did numerous blood tests due to the TPN and it turns out I have hyperparahyroid syndrome which I have since found out causes loss of appetite, exhaustion, bone pain yada..yada..yada. Everything I had been complaining of for last 18 months. Only treatment is to find which of the four parathyroid glands is causing the problem and remove it. The NHS will only do this however, if the calcium level is sky high of you have repeated kidney stones. Trouble is I saw my new gastro team last week and I have lost 7 kilos since leaving hospital and if I lose more they will put me on TPN. Seems mad that they would rather spend thousands on TPN every month than do the surgery all because of NHS funding guidelines.
To top it all off suddenly I have developed an infection in the site where the central line was, it was removed before I left hospital and the dr who took it out hadn't come across one like this before so fear he has left some of the tissue cuff inside the artery which is causing the problem. Something else to sort out. Back to work next week even though feel like a walking zombie but need to get back to normal.
Sorry, waffle over. Just when one thing is sorted, something else crawls out of woodwork. Wouldn't mind but the Crohn's itself has been in remission for ages. This is all the after effects caused by it.
To all who are having a hard time, hope you find some good days really soon.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, short bowel syndrome, many surgeries for abscessses & strictures. Lupus - caused by Humira, nerve damage, 6 displaced discs in neck and 1 in lower back. Hyperparathyroid disease. Azathioprine, immodium, fludrocortisone, oxycodone, gabapentin, amitriptyline, vit d