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Slice and Dice – Part 2

in the hospital bed

checking out the old phone from the hospital bed…:)

Introduction:

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.

Symptoms:

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!

getting ready to hit the pain medication button

getting ready to hit the pain medication button

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!

stoma site

stoma site

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.

recovery time!

recovery time!

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.

some of the hospital crew!

some of the hospital crew!

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 meganlearls@gmail.com

xx

All is going

Medications I’m ON:

None!

written by Megan

submitted in the colitis venting area





14 Responses to “Slice and Dice – Part 2”

  1. AdamJune 16, 2013 at 4:32 am #

    Congrats Bigtime Megan!! So happy you’re finally getting the chance to move forward and on with your life without dealing with nasty UC symptoms.

    (ALso, I was starting to think you (or me) was going a bit crazy. “How in the world could they be doing surgeries at the movie theater down there in the land of Australia…???” So good old wikipedia cleared it all up for me:)

    “”An operating theater (or theatre) is a non-sterile, tiered theater or amphitheater in which students and other spectators could watch surgeons perform surgery. Within the Commonwealth nations, the term is used synonymously with operating room (OR) or operating suite, the modern facility within a hospital where surgical operations are carried out in a sterile environment.””

    haha!!

    best to you and your family and thanks again for sharing what’s up with you (and for including all the pictures!)

    -Adam

    • Megan from Australia
      meganJune 18, 2013 at 3:59 pm #

      Haha sorry Adam, did not even think of the whole theatre/OR thing! you must have been thinking I was crazy! :)

  2. bevJune 16, 2013 at 1:58 pm #

    :)

  3. ahmedJune 16, 2013 at 9:55 pm #

    you were so patient, wish to you a life full of health, happiness and love :)

  4. Jen From UK
    JenJune 18, 2013 at 2:00 am #

    Thank you :-) wishing you all the best for a very healthy future, Jen

  5. Megan from Australia
    meganJune 18, 2013 at 3:58 pm #

    Thanks everyone, and also for the emails :) x

  6. mandyJune 20, 2013 at 8:24 am #

    Hi megan i have just read your amazing story you have gone through a lot and only 22 i have UC and have had it now since 2009 i am on a bad flare and have been since oct 2012 i am back at hospital 3rd July as no treatment is working.
    my question (if you dont mind me asking)
    you say that you still have your rectum but you have had your colon removed? how do you pass stools is it now into a colostomy bag or via the rectum im abit confused can you explain why they leave the rectum?
    sorry to ask but i want to gather as much advice as possible if i ever have to go thorugh something similar
    hope your still doing well.
    mandy :-)

    • Megan from Australia
      meganJune 20, 2013 at 4:38 pm #

      Hi Mandy.

      I have the ileostomy and the bag for passing waste. The rectum was left in incase i ever decide to have my small intestine rejoined to it in tje future . Because i have my rectum not connected to anything except my bum, it produces a small amount of mucous which i sit down on the loo to pass. Hope this explains it!
      All the very best wishes to you and get well soon
      :)xo

  7. emmaJune 23, 2013 at 4:46 pm #

    Hi Megan

    I just read ur story and feel that I can definintely relate to your experience, which I cvommened u for sharing and posting pics of. U sound very positive and strong! I’m 32 and wfrom Toronto in Canada and was dx with proctitis in nov 2011 then things got worse from dec 2012 onwards with UC symptoms and was on all sorts of anti-inflammatory meds but nothuing worked. Then I was dx in March 2013 but was admitted to hospital in April and still no meds worked so I had my colon rmeoved on may 5 but wasn’t discharged untul May 23 due to some complications like blockage to the stoma, an infection I contracted anf learning tolive wit the pouch. Anyway I’m grateful that my colon was removed and I can dunction well now but I’m still a mix o emotions about my reocvery and nmy new situatuon as I had to put certain aspects of my life on the backbruner. So i wanted to reach out and as another ‘newbie’ about their experience as I’m attempting positivity but struggle @ times. Thanks:)

    • Megan from Australia
      MeganJuly 2, 2013 at 4:58 pm #

      Hi Emma,

      Sorry I didnt reply sooner! That sucks you had so many complications and had to stay in the hospital for such a long time but I hope everything is going perfectly now? I guess it does cause a range of emotions but please dont forget about aspects of your life that are important to you. I guess it has its bad points (blockags, poo fairy visits) but we have to remember how crook we were before the surgery. That said, I am still a bit scared about going to the pool- I really dont wanna cause a mass evacuation HAHA. But I wont know until I try.

      Best wishes Emma :)

  8. colney.kJuly 1, 2013 at 5:30 am #

    Hi Megan,m 34,r u goin to gt operated to join ur rectum wt ur small intestine or it vl be that way.im realy having hard time to decide whether i should do surgery.i gt relape evry three years since 2003 but now before i evn get a whole full year out of no where within 6months i get relapse ds time i still gt m regular solid bowel movement along wt blood.but m considering surgery do u think Il be able to go cycling,driving once i recover from surgery.i hv this disease since i was 16 imean daignose well by 13 i used to get mucus motion.ihv been treated thrice 2006,2009,2012 with remicade but my last was not realy helping much but miracle happen but now back to square one.on thursday il do colonoscopy n discuss wt my gastro doc who is also phsycian askme not to rush into surgery but if it all goes well for people who get surgery i think i should do too.but m concern is will i be able to dance,drive n go cycling again?n what about weight lifting well not that il lift 100kgs:-)m talking about gym.??

    • Megan from Australia
      MeganJuly 2, 2013 at 5:06 pm #

      Hi Colney.k

      Im thinking that I wont be reconnected because I think Ive had my fair share of ‘seat time’ and its so good not having to worry about it, that said, it might be something to consider in the future :)

      Im sorry that you are relapsing more often than in the past. I guess the surgery is a massive choice and only used in emergencies or when you just cant deal with the symptoms anymore and nothing works.
      You will be able to do all the activities you mention, all without the worry of where the nearest loo is! Driving for me was do-able but a bit of a challange 4 weeks after surgery because it uses all your muscles the surgeons have cut through! haha

      I plan on going back to the gym maybe within 2 weeks just to do some very light stuff, but if you build up gradually and dont push yourself too soon you would certainly be able to do weight lifting!!

      How did you go with the GI and scope? do they think surgery is a good idea? I guess what I would say regarding your choice is dont rush, take the advice of the drs, consider time off work etc, and is your UC at a point that the bad outweighs the good?

      Good luck :)

  9. colney.kJuly 20, 2013 at 12:58 pm #

    hi Megan,m glad u find time to reply my msg.yes my GI who is a physician was tryn his best to keep m colon intact:-)but unfortunately this time he also advice me to remove fo good.im not feel sad though some pple might be sad for me but considering the heavy medicine with its side effect and that ihv to eat forever i feel lucky i still hv option of removing my colon well i feel its not of any use it might secrete nutrition but for me it has given me a hell of my time.having to run to poo like 30times i feel 5/6is far better and easier and today a fren who is a doctor told me with times are body get use to of are small intestine and it vl settle so i feel its much better all those suffering i had,it will only a matter of few months instead of living it worries all the time whn my colitis will relapse well though idont think about it much but since 2009 relapse it hvnot bn all that perfect with my joins pain cyst in my ovary etc all the effect of steroid.i would be happier to hv nutritional supplement then having to take steriods.
    Im still deciding on the best doctor my GI suggesting and the hospital i prefer from tomorrow il be visiting hospital and nursing home i prefer to look for my requirements.once again thank you so much for everything and i hope all is well with you,all the best and i will keep you updated with my news:-)

  10. colney.kAugust 10, 2013 at 7:21 am #

    Hi megan, i gues u r recovery is gud n u busy wt ur life now.well m surgery was cancel due to slide fever 100. F but i guess ty r careful.i was discharge yesterday and again il be admitted to tk control of my fever ds time to the hospital my GI suggest the previous was gud fo the surgeon n me but not m GI well its a gud hospital too and some people in ihv UC r talking about name of stoma bag does it mk difference?how r u coping u jus goin to hv ur ileum? U not goin fo j-pouch?

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