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UC has changed me in that iv noticed iv become more withdrawn, more emotional and my poor boyfriend has to now listen to me complaining everyday of the various symptoms, aches and pains that go along with this lovely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
I was first diagnoses with Ulcerative Colitis in 2009 and eventually had to have the total colectomy and ileoanal pouch surgery. The final surgery was completed in February 2014 and all was well until recently. I saw my GI this afternoon and am scheduled for a colonoscopy in 2 weeks time
Dear Aphrael,
You are an incredible person. And you for sure are going to get past these tuff times you’re in the middle of right now. Reading your story brought back some creepily erie feelings, ones that I thought I’d forgot about until you put them into words. And that of course is the feelings and thoughts that dance around our heads when it comes to the big “S” talk. Talking with the doctors about surgery. I remember thinking in my head, while I was sitting in my undies, “OK Doc…well how about you go F yourself, and not until I pass out from blood loss will you ever have the chance to pull out my colon…”
Anyways, in a way only a fellow UC’er may understand, thanks for bringing back the memories. Three and a half years can fly by. Although i never ended up getting the surgery, I definitely remember it being a hard topic to wrap my brain around.
The good news is that this topic doesn’t have to be impossible. The reality is that there are people everyday getting their colon removed, and it isn’t the end of the world. I’ve spoken with three people just in the past week who wrote to me saying that they just had surgery and have not felt better in years. And last time I checked, feeling good is the goal right???:))
Do me a favor, I put together a pretty cool survey with the help of 26 awesome souls who already had surgery, and this survey is filled with questions AND answers to questions I’m guessing you’re asking yourself right now.
here’s the link:
https://ihaveuc.com/26-colitis-surgery-patients-survey-results/
Keep your head up Aphrael, and I wish you the very best with your doc meeting.
-Adam
Adam, your an inspiration! The surgeons threatened me, yes threatened me, when I was hospitalized with a bad flare-up, that if my colon wasn’t removed I’d be dead by the end of the week. Scary shit! I just knew then that I was improving (slightly) everyday, therefore I must be healing. My thoughts exactly: go F… yourselves, you arrogant, sanctimonious pricks. How dare you threaten – talk – to someone like that, who is obviously stressed enough from bleeding profusely, and being hospitalized. Long story short, I’m still alive (with a colon) and thanx to a strict diet and supplements, have my colitis in remission. No thanx to the drugs they prescribed (which I stopped taken once I tapered off prednizone) ie, 6MP and all the other bulls..t. All they know is draconian surgery and nasty drug therapy – Great!
Plus, they DON’T advocate diet or lifestyle as a form of treatment. Bastards! Excuse language, but it has been a extremely emotional trip.
Cheers Adam, keep up the good work.
Joe
hey, don’t sweat! doctors talk about surgery all the time. it’s your decision whether you will have it. i had a surgery consult about 8 months ago and the doctor just tells you like it is. it’s not scary at all though.
have you tried any diet changes of alternative therapies? there is SO much out there besides surgery if you don’t mind experimenting. and i’m not saying surgery is bad, but who’s to know how that will come out? it’s very dangerous and you have to really think about it and be sure.
Hi Joanna
I have never found diet to influence my UC. Iv never identified any type of food that triggers a flare or makes it worse. I have prev tried to go the homeopathic route but that didnt help me much…met with my GI today and as expected, there are no other medications that we havent tried so surgery is the next step. I will make appointment to meet the surgeon and discuss how it works etc.
My newest terror since reading up on the surgery is the incontinence! Im terrified of the idea that i might not be able to control my bowel movements…thats a relationship killer all on its own.
Im so tempted to just leave everything until iv had kids one day cause im also really scared about the infertility aspect. But can i afford to go without medication for the next few years before i get to that stage? What makes it so tempting is cause once i hit remission due to cortisone, my body usually stays in remission for at least a year so my argument is why cant i stay off any meds for as long as possible and just use cortisone whenever i hit a flare until iv had kids etc some day and then do the surgery? But my GI says that if i go without meds then it will just get worse over time – just cause symptoms are bearable now does not mean its going to stay that way. And to be honest, i tried going without meds once before and thats when it progressed from proctitis into pancolitis so dont know if thats a winner either…
so confused :-(