Introduction:
I was diagnosed with UC in 2009 after endless trips to doctor for gastroenterologist. After going through all the medications available, it was decided that surgery was the only option. My first surgery was in April 2013 and i am currently 2 weeks post op of my second surgery. My surgeon decided to do this in three stages due to all the medications i had been on at the time. I’m writing this as an update for anyone who is heading in the same direction since i know how scared and unsure i was at the time.
Some more about me:
I am a clinical psychologist from South Africa. I love horse-riding though that has had to take a bit of a back slide this past year due to the surgeries. My family were initially very anti-surgery as they were terrified something would go wrong and they felt surgery was too serious a solution. They obviously had no idea what it is like living with UC despite me trying to explain it to them numerous times
Symptoms:
Presently i am 100% symptom free
Stage Two out of Three Surgery Done and Dusted!
I never felt as if my ulcerative colitis was really that bad. Though it was diagnosed as moderate to severe and it spread eventually throughout my whole colon, the symptoms i would have was general bloody diarrhea and bloatedness, nausea and a general lack of energy. I was terrified of starting the biological medications at the time but my GI said it was either that or surgery as no other medications were working.
As i have said, my family were not very supportive of the surgery idea so i tried the biological. I cant really say if it worked or not, i was in a remission phase when they started it and i was forced to stop when i started developing skin numbness and my chest would close up during the infusion. So surgery it was…
Thank heavens i landed up at the surgeon I did. Doctor Bebington in Johannesburg is fortunately one of those that really takes his time with his patients to explain every step of the process. I was informed of the risks: infertility and incontinence were my biggest fears but I put my faith in him to do the job right.
In April 2013 the first of the 3 surgeries was done, Total Colectomy with Ileoanal pouch. The idea of going to sleep whole and then waking up with a part of your body missing and wearing an ileostomy bag was not the greatest. I will be honest, the recovery period was painful, thank heavens for morphine. I’m not going to go in to more detail as i have posted previously about this op.
After 2 weeks in hospital i was discharged and 3 weeks later i was back at work. All went well, i only had one small complication of gastro landing me in hospital due to dehydration 3 weeks prior my most recent surgery. I recovered from that and we proceeded to the second surgery which was done 30 Sept 2013.
This was the big one. As the surgeon said, this is the one that all depends on his skill as it could cause the infertility etc. Went to hospital 06:00am the morning then just hanged around in the ward until they were ready for me in theater at 13:00. Six hours later i was in ICU for monitoring purposes and not even half as painful as the first surgery! Of course, i did not expect the surgical cut to be so long or to have staples in my stomach as i was under the impression they would be using the same surgical cut as last time and again use the cosmetic stitches as he had previously. Apparently due to my small body structure this wasn’t possible so i currently have 30 staples running from 10cm above my belly button all the way down into my pubic hair. It sounds scary but it really isn’t that bad!
Obviously as a woman i am concerned about what the scar is going to look like at the end and whether i will be wearing bikinis again ever but that still remains to be seen…I was pleasantly surprised by the lack of pain from this operation. I was walking and bathing myself within 2 days post-op and all went well. I did have two complications, one being a blood clot that had formed behind the pouch that they constructed but doctors were not concerned at all and have left this to resolve itself; the other being a blockage i developed in hospital due to a Stir-Fry meal. That was painful but fortunately it resolved itself the next day.
I am currently recovering at home. I am scheduled to see my surgeon and stoma therapist this thursday for follow up to hear when i will be returning to work etc. So far so good!
One negative that i can sasy though, i do not enjoy the loop stoma as much as i had the previous one. This one is more an oval shape which makes it difficult for me to size the ileostomy bags and so far it itches like crazy but im hoping that improves!
Anyone who has the surgery ahead of you, it’s ok to be scared, but trust your surgeon. I was telling my friends and family the other day that i can only now see how miserable i really was doing when i had full blown UC now that i have no symptoms. Everyone is adaptable, we learn to live with situations, just as i learnt to live with UC, it became normal for me to feel horrible. Since the surgeries, i feel normal again and would recommend it to anyone.
Medications:
Been through all the meds and unfortunately i cannot recommend any of them as i developed an allergic reaction to most of them; only cure was surgery.
Currently i am taking Berocca every day as a supplement and have to maintain hydration but other than that i’m medication free
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
