To Cut or Not To Cut

Meet Aphrael:

29 year old Clinical Psychologist currently busy with my Phd. Diagnosed with UC in 2009. Have had 4 or 5 colonoscopys in this time, most recent one beginning Feb 2013. Initially i only had ulcerative proctitis but it has since progressed to Ulcerative pancolitis. Been on most medications and landed in hospital twice due to allergic reactions so eventually landed on Revellex as the last resort. Been on it since April 2012 but now at a point where im getting neurological side effects so my GI wants to stop it, leaving surgery as my only option left as no other meds available in SA at present that i havent tried already…

Some more about me:

I’m currently based in Centurion South Africa, I love horse riding and though i hate gym, i do try to go when i can. Mostly people would call me an introvert especially with people I don’t know but if I’m comfortable with you, i open up more.

My Symptoms:

Currently I have the painful cramps and bloating, stools fluctuate between loose and constipation and low energy.

To Cut or Not To Cut

My family are very supportive but my mom is in almost panic mode at the idea of me getting surgery. I get about 6 emails a day about info she has read on internet about UC treatments etc available overseas which helps me nothing considering they aren’t available or approved in SA yet.

As for all the colonoscopies, i reassure myself by saying that i must have an awesome butt since every doctor i see seem to want to take a closer intimate look at it… ;-)

UC has changed me in that iv noticed iv become more withdrawn, more emotional and my poor boyfriend has to now listen to me complaining everyday of the various symptoms, aches and pains that go along with this lovely disease. My boss calls me in on a regular basis to say that he is concerned about me as he can see im not happy etc I cant remember when last i actually felt totally normal, without some or other pain in my stomach. Im basically cortisone dependent at this stage which leads to all the joyous symptoms of weight gain and water retention to name a few.

I’m dreading my meeting with the GI tomorrow

cause i just know that this is going to lead to surgery

…and what then?

Will my boyfriend still find me attractive if i have a bag for a few months while waiting for the 2nd surgery? Will i develop pouchitis? (and quite frankly, looking at my track record, Murphy is looking over my shoulder so i probably will!)…then i worry about things like fertility and UC . Other days i think to hell with it, just get the surgery done with already!

Medications I’ve Tried:

IRight at the beginning i was started on Asacol suppositories…side effects got so bad that i had severe diarrhea and vomiting but when i contacted my GI at the time, he insisted i had to stay on the stuff. Eventually i landed at ER and was admitted. I then got assessed by the GI of the admitting hospital (my current GI) who after a week in hospital, had me on cortisone etc and then tried pentasa…needless to say (since it is another 5-ASA brand, i landed back in hospital for the same reason. He then put me over onto azathioprine but when i suffered the same side effects for 3 days, i decided to stop meds myself.I then tried going the homeopathic route as i was symptom free due to the cortisone…that didnt last long. Eventually presented back to GI when i flared up again and i eventually got started on Revellex. That was April 2012. Iv been getting infusions every 2 months but for past 2 infusions have experienced a reaction during the infusion as well as neurological fallout. Saw GI last week and he basically saying surgery looks like only option. We agreed that he would try read up on possible alternative meds and i would see him again next week to discuss options…so thats where im at at the moment with meds. Seeing him tomorrow

written by Aphrael

submitted in the colitis venting area