So this is a letter I received from my surgeon regarding the planned proctocolectomy. Pretty shell shocked about it really.
Diagnosis:
1. Crohn's disease
2. Ileoanal pouch and associated fistulating perineal disease
3. Metronidazole or Ciprofloxacin associated pancreatitis
4. Fatty liver
5. Osteopenia
6. Non-insulin dependent diabetes
Investigations:
* March 2013 - MR small bowel - no definitive small bowel disease
* 14th November 2013 - sigmoidoscopy, healthy pouch, horrible anastomosis - histology no dysplasia or malignancy
I saw Robert in Professor Carlson's clinic and he is well. He has only recently been seen by Dr Lal who is trying to get funding to increase his Humira to weekly from every two weeks. Robert continues to open his bowels 6-8 times a day and he does use Codeine to try to control this and Loperamide occasionally, but these are both on a prn basis. He continues to work as a web designer, and is planning on getting married in February 2015. He would like to have children, preferably two.
On examination his abdomen is soft and non-tender. His perineum does have quite significant perianal excoriation as there is small volume faecal seepage, which is no doubt the cause of this problem. More anteriorly there is quite a significant area of perineal skin and probably base of scrotal skin induration with the Seton's in situ. There is no evidence of any abscess formation or current cellulitis.
Robert appears to be managing at present. He currently uses Savlon in an attempt to "calm down" his perineal irritation and I have advised him to use Sudocrem instead as a barrier in attempt to keep the liquid faeces off his skin, and reduce the inflammation. I also think that if he was able to reduce the frequency of defecation to around 3 or 4 times a day rather than 6 to 8. This would also improve his perineal irritation as following opening his bowels he tends to wash himself with soap and then dry himself, all of which can cause an element of local irritation.
We had also discussed the fact that during his latest endoscopic investigation he did have a badly inflamed anastomosis. He understands that suffering with moderate or severe chronic inflamed bowel does place him at a risk of developing a malignancy in the future. He understands that surveillance is a possibility, however it would be in his best interest to have this removed before he developed any serious problems. He has a few concerns primarily and the fact the does want to father children. As mentioned previously he is getting married early next year, and he endeavours to start trying for children soon after this. He would like to have two children.
He understands that having a completion proctocolectomy does involve a difficult dissection in the pelvis. This does place him at a risk of sexual dysfunction, primarily impotence and retrograde ejaculation. He understands that there is also a possibility of bladder dysfunction. Sperm banking may be an option for him should he wish this come the time.
He understands that he will be left with a permanent ileostomy with no prospects for reversal. He also understands that as he suffers with Crohn's disease there is also a possibility of recurrence of his disease in the small bowel. Robert understands that eventually it is likely he will end up having a completion proctectomy. I do not think it is unreasonable for him to delay this in order to get married and have a family, but I did mention to him that we would like to keep him under review to have further discussions before the operation and address any further concerns he may have.
I have given him a 6 month follow-up as I think it is important for him to discuss these issues again, and I shall also make arrangements for him to have a follow-up flexible sigmoidoscopy in another 6 months time given the fact that it was severely inflamed at the previous inspection.
Original Post
