- Joined
- Feb 17, 2015
- Messages
- 32
I've posted quite a lot over the past few weeks as I am having a really horrible time post surgery and I now have another issue I would like your opinions on please.
Mouth ulcers have always been the hallmark of when my disease is acting up. Before I had surgery 3 weeks ago I had about 30 large ones covering the roof of my mouth and down my throat and they didn't clear until I was on high dose IV steroids ( oral steroids don't work for me).
3 weeks ago after all the meds failed I had my complete colon removed and I currently do not have any disease anywhere else apart from a small amount in my rectal stump which they confirmed on Monday when I had abscesses surgery. I am also currently no longer on any ibd meds apart from 10mg prednisolone which I am tapering.
About 5 days after surgery I started to get tiny mouth ulcers on my lips and oral thrush . This was on the day I was being discharged and I was told it was because I was severely malnourished and my immune system is practically none existant. My surgeon gave me a 7 day course of nystatin ( which did nothing) and a vitamin b complex strong tablets which I am currently still taking and have about a week left.
Despite taking the supplements, nutritional drinks and eating when I can the ulcers have gotten worse to the point where I now have about 20 around my lips and tip of my tongue, one on the tip on the gum where a wisdom tooth is growing?! And several others around my teeth and the back of my tongue. It also looks like I may have some forming on my uvula however they are very similar if not the same ulcers I had before surgery, so I don't know if they are old ulcers reappearing?
They are a lot smaller than they were before surgery, some are the size of a pinprick however because of their positions it has become extremely painful to eat and drink. It should also be noted that alongside recovering from ileostomy surgery and recent surgery to drain a perianal abscesses, I am also suffering with complications such as shingles and a chest infection so I have been on antibiotics for over 2 weeks.I also have indeterminate colitis. Every biopsy I have had has come back inconclusive however in a few weeks I should get the results from the large sample that was my colon to figure out if i have crohns or UC. They are currently favouring UC.
I don't really know what to do at this point. Despite taking the supplements, resting, eating and drinking plenty of fluids the ulcers are getting worse which is making me think it is not malnourishment. Could the small amount of disease in my rectum be causing this? Or are the mouth ulcers a sign of crohns and I will just have to suffer with them for the rest of my life despite having little/no active disease elsewhere. I have gotten to the point where even drinking water is painful!
Also my other symptoms before were bright red heavy blood loss and mucus, extreme weight loss, abdominal cramping, nausea, urgency and frequent trips to the bathroom and diarrhoea. I no longer have any of these symptoms since having my ileostomy.
Please help I am miserable!
Mouth ulcers have always been the hallmark of when my disease is acting up. Before I had surgery 3 weeks ago I had about 30 large ones covering the roof of my mouth and down my throat and they didn't clear until I was on high dose IV steroids ( oral steroids don't work for me).
3 weeks ago after all the meds failed I had my complete colon removed and I currently do not have any disease anywhere else apart from a small amount in my rectal stump which they confirmed on Monday when I had abscesses surgery. I am also currently no longer on any ibd meds apart from 10mg prednisolone which I am tapering.
About 5 days after surgery I started to get tiny mouth ulcers on my lips and oral thrush . This was on the day I was being discharged and I was told it was because I was severely malnourished and my immune system is practically none existant. My surgeon gave me a 7 day course of nystatin ( which did nothing) and a vitamin b complex strong tablets which I am currently still taking and have about a week left.
Despite taking the supplements, nutritional drinks and eating when I can the ulcers have gotten worse to the point where I now have about 20 around my lips and tip of my tongue, one on the tip on the gum where a wisdom tooth is growing?! And several others around my teeth and the back of my tongue. It also looks like I may have some forming on my uvula however they are very similar if not the same ulcers I had before surgery, so I don't know if they are old ulcers reappearing?
They are a lot smaller than they were before surgery, some are the size of a pinprick however because of their positions it has become extremely painful to eat and drink. It should also be noted that alongside recovering from ileostomy surgery and recent surgery to drain a perianal abscesses, I am also suffering with complications such as shingles and a chest infection so I have been on antibiotics for over 2 weeks.I also have indeterminate colitis. Every biopsy I have had has come back inconclusive however in a few weeks I should get the results from the large sample that was my colon to figure out if i have crohns or UC. They are currently favouring UC.
I don't really know what to do at this point. Despite taking the supplements, resting, eating and drinking plenty of fluids the ulcers are getting worse which is making me think it is not malnourishment. Could the small amount of disease in my rectum be causing this? Or are the mouth ulcers a sign of crohns and I will just have to suffer with them for the rest of my life despite having little/no active disease elsewhere. I have gotten to the point where even drinking water is painful!
Also my other symptoms before were bright red heavy blood loss and mucus, extreme weight loss, abdominal cramping, nausea, urgency and frequent trips to the bathroom and diarrhoea. I no longer have any of these symptoms since having my ileostomy.
Please help I am miserable!
