My name is Megan and I wanted to share my story and some photos about my colectomy I had in May. I was diagnosed with UC in February 2012 and was cured in May 2013 after drugs failed to really work for me : (My previous story is here: “Is It Time to Slice and Dice?” )
Some more about me:
My hobbies (when feeling good) are CFA where I am the secretary and a firefighter, my study in the area of cancer immunology, photography, food (haha) and being with my awesome friends and family. I am from Warrnambool in Victoria (Aus) but moved to Buninyong for uni 4 years ago.
After my colectomy the only ‘symptoms’ I have are slight urgency to go to the toilet in ‘the normal way’ because I still have my rectum, which produces mucous which needs to be passed. This is not the same urgency that active UC causes but its still a very strange feeling. After sitting on the loo for a few minutes it goes away. This might only happen 3-4 times a week.
Slice and Dice – Part 2
My pre surgery story in a nutshell:
Experienced all the usual symptoms, in denial before Daniel (partner) found me an awesome GP who after some butt exploring sent me to a GI. Went to the GI appointment and went in for my first scope the next day! UC diagnosed!
Tried all the drugs, bulk pred, every time I tried to taper down I would get to 5mg and the blood and unformed stools would return. My GI doctor left to go to another hospital interstate so I went to another GI. He got me into remission with Imuran but my liver function became highly abnormal, so straight off those tablets, managing with Mezavant and pred until my consultation with GI surgeon.
Consult day rolls around and I go to the appointment with Daniel and my mum, he goes over what he would do, risks, outcomes etc. He puts me in the computer for a surgery date in July and organized for me to have a meeting with the stoma nurse. At the stoma appointment I meet the nurse Matt, and we go over types of bags, what they look like, what the output would be like, things I shouldn’t do (like eat a kilo of grapes) and I’m sure much more which I can’t remember. He gives me a ‘take home pack’ which contains a DVD, a few bags to ‘practice’ with, a stick on stoma, and lots of very handy info!
So I get home, watch the DVD straight away, stick on my ‘stoma’ and bag and get around with it on..haha
So, all is going as well as it can be in a flare when in early May we are house sitting for some friends when I enter another massive flare which was somehow worse than before I was diagnosed- it was horrible! I was in the loo for 30 minutes every hr, getting up at least 5 times during the night, vomiting and having zero energy. So, after a week it was off to the GP. He called the emergency department and I was in the next morning. Of course I thought I would be there for the day or the weekend so I packed PJS, a book and not much else. How I was wrong!
So I get IV fluids, explain my story to a few doctors, run to the loo in those nasty gowns with my bum hanging out about 10 times and meet one of the surgery guys who says at this point the surgery may be on Tuesday to help with symptom control. (Even though I was so excited for the surgery, it was supposed to be 21 days away- Instant tears and feeling of ” I only have 2 full days of life left my colon!?, what the hell?”
I’m then admitted to hospital and transferred to a ward where I am treated with massive doses of IV steroids which still didn’t give me a formed stool- oh well This caused moon face like never before!
Surgery is locked in for May 24 so now we must taper off the steroids, have my stoma sited and get ready! I’m still in hospital for all this and had been in for nearly a week before the surgery.
Friday the 24th is here. I have absolute faith in the medical professionals but I’m shitting myself. The nurse comes in (who I’ve started to get to know well) with the surgery gown for me to get changed into, its almost go time :/
So I’m dressed up in this fabulous gown watching some random movie on TV when the orderly comes in to take me to theatre. Sides of the bed go up, brakes off and away we go! At this point I’m REALLY nervous and I’m making sure Mum and Daniel are walking with us to the lifts. Through my tears we manage to get another thumbs up photo before I disappear into the elevator.
Get to the theatre and speak to the anesthetist about my options concerning pain relief. I have three options. 1) epidural 2) some needle that also goes in your spine but stays there or 3) a button I can push which is connected to my IV. The thought of a massive needle being injected between my vertebra is too much for me so I take option 3. Turns out my blood work would have only allowed this anyway. PHEW!
Have one last chat to the intern who has seen me everyday and they crack some jokes, and get a laugh/cry from me. Finally get rolled in, transferred to table and a mask goes over my mouth- see you on the flip side!
Come to and hear a nurse saying “Megan, can you open your eyes?”. I try and get them half there before I go back to sleep. I hear the TV go on and the footy is on. Apparently I ask mum and Daniel what they had for lunch about ten times- blame the anesthetic! So some more time passes (A few hrs) and I wake up for a while. Mum asks if she can have a look and I say go ahead. I hear in my haze that they couldnt do keyhole before I am back asleep.
So I wake up for long enough to check out my new addition, MSG everyone and eat some ice chips. I was seeing double but I got there eventually!
Anyway this is dragging on so I shall get on with it. The next day I am allowed to eat, woop woop! have some nuggets (haha) and chew them for about 10 mins each because I’m so paranoid Ill block up the stoma! I also tried to get up for a shower with the nurse but couldn’t do it. We tried a few hours later and I hobbled to the bathroom, success!
All was going well, I was eating a normal diet, off my UC meds and hobbling around, however on the 3rd or 4th night post surgery I seemed to have a blockage- it was like having to pass bulk wind but not being able. The pressure was intense and I couldn’t even hold down the IV pain button because they had removed it the day before This pressure caused me to vomit and with my abdomen being cut through days before this was excruciating. Ouchies!!
The Dr. ordered me some meds to ‘get things moving’ which they did and the next day I was fine
As all was going well and I was able to change my bag myself I was discharged on Thursday the 30th, HOME TIME.
All has been awesome since. I’ve been to a wedding, out for dinner and lunch and various outings. I have had two leaks during the night but I am fairly sure they were caused by me letting the bag fill up because I wasn’t waking to empty it. This has been solved by setting alarms every 3 hours during the night. Too easy!
Anyway, sorry for the long story. If anyone has any questions about the surgery please feel free to ask! Nothing is off limits and I hope I can help you!! Also I have lots of photos of the stoma and scar. If anyone is interested in what it is really like email firstname.lastname@example.org
All is going
Medications I’m ON:
written by Megan
submitted in the colitis venting area