In the modern day of social media, it is hard to believe that this is my first online posting of any sort. I guess that might be one of the few positive things to come out of having IBD, but this posting is out of desperation and hope of making the right decision...all thoughts, experiences, ideas welcome.
Symptoms/Meds;
I'm 36 years old. On/off IBD symptoms for probably 10+ years...1st colonoscopy and diagnosis of indeterminate colitis 2009. 2nd Colonoscopy 2011 no inflammation observed. 3rd Colonoscopy Oct 2012 - patchy, confluent throughout large and intestine biopsy's more indicative of UC than Crohns- The Symptoms - Busiest in the morning 3-6 visits mainly D, at best loose formed. At worst 8-10 visits all D with cramps, bleeding and shivers. Worst symptom for me is lethargy and general fatigue. Been on Mezalazine /azathioprine/ Mercaptopurine/ Prednisolone/ Infliximab/ Adalimimab with mixed fortunes but longest period of feeling "normal" 10 days in last 2 years. Calprotectin scores often raised between 600-1400 but ESR blood tests generally normal and not anemic.
The situation
Saw my GI consultant in December, whom I hugely respect. He said having exhausted all meds, last biopsy's being more UC than Crohn's and still feeling below par, I should see the surgeon. I have met with him (surgeon) and the stoma specialist and I am comfortable with the proposed plan for 2 stage Ileostomy and "J" pouch planned for 22nd Feb. I was borderline excited at the prospect of a potential cure.
My Dilemma
I stopped taking the Humira two and half weeks ago. Energy level's have improved (albeit kind of forgotten what it is like to feel "normal") and only going twice a day with no cramping! My concerns are that I know the meds don't agree with me but I might now hitting a period of remission with about 3 weeks before I am due for life changing surgery.
My Concern's and questions to fellow IBD sufferer's;
I know the decision is ultimately mine and only I know how I feel but I welcome thoughts on whether I delay the op and see if I make it back to feeling "normal" or whether infact I am delaying the inevitable and the ultimate relief of the procedure is worth just biting the bullet and going for the cure? As a former pro rugby player and generally/formerly very active, with 3 young, adorable children, is this worth going for to finally get my "spring" back or have faith that I may finally going into remission!?
Foot notes;
1)I class my self as lucky when I read how miserable and painful others have CD and UC hence do I persevere to continue waking every morning wondering how I will be that day or take the op.
2)When I asked my GI guy what he would do knowing my case - he said he would have it out tomorrow and take an Ileostomy but with this symptomatic change I wonder whether this would change his mind. I have put a call in to him and I await his thoughts also.
I am not an straightforward case but hopefully not an awkward customer!
Thanks for any thoughts / advice / guidance
Symptoms/Meds;
I'm 36 years old. On/off IBD symptoms for probably 10+ years...1st colonoscopy and diagnosis of indeterminate colitis 2009. 2nd Colonoscopy 2011 no inflammation observed. 3rd Colonoscopy Oct 2012 - patchy, confluent throughout large and intestine biopsy's more indicative of UC than Crohns- The Symptoms - Busiest in the morning 3-6 visits mainly D, at best loose formed. At worst 8-10 visits all D with cramps, bleeding and shivers. Worst symptom for me is lethargy and general fatigue. Been on Mezalazine /azathioprine/ Mercaptopurine/ Prednisolone/ Infliximab/ Adalimimab with mixed fortunes but longest period of feeling "normal" 10 days in last 2 years. Calprotectin scores often raised between 600-1400 but ESR blood tests generally normal and not anemic.
The situation
Saw my GI consultant in December, whom I hugely respect. He said having exhausted all meds, last biopsy's being more UC than Crohn's and still feeling below par, I should see the surgeon. I have met with him (surgeon) and the stoma specialist and I am comfortable with the proposed plan for 2 stage Ileostomy and "J" pouch planned for 22nd Feb. I was borderline excited at the prospect of a potential cure.
My Dilemma
I stopped taking the Humira two and half weeks ago. Energy level's have improved (albeit kind of forgotten what it is like to feel "normal") and only going twice a day with no cramping! My concerns are that I know the meds don't agree with me but I might now hitting a period of remission with about 3 weeks before I am due for life changing surgery.
My Concern's and questions to fellow IBD sufferer's;
I know the decision is ultimately mine and only I know how I feel but I welcome thoughts on whether I delay the op and see if I make it back to feeling "normal" or whether infact I am delaying the inevitable and the ultimate relief of the procedure is worth just biting the bullet and going for the cure? As a former pro rugby player and generally/formerly very active, with 3 young, adorable children, is this worth going for to finally get my "spring" back or have faith that I may finally going into remission!?
Foot notes;
1)I class my self as lucky when I read how miserable and painful others have CD and UC hence do I persevere to continue waking every morning wondering how I will be that day or take the op.
2)When I asked my GI guy what he would do knowing my case - he said he would have it out tomorrow and take an Ileostomy but with this symptomatic change I wonder whether this would change his mind. I have put a call in to him and I await his thoughts also.
I am not an straightforward case but hopefully not an awkward customer!
Thanks for any thoughts / advice / guidance