Stage Two out of Three Surgery Done and Dusted!

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









5 Responses to Stage Two out of Three Surgery Done and Dusted!

  1. Adam October 22, 2013 at 11:09 am #

    Congrats Aphrael on all you’ve made it through and for sharing with everyone.

    Hey, do us all a favor, and post a doctor review on the doctor review page here:

    http://www.ihaveuc.com/gastroenterologist/

    (I just checked, and there’s no review on the main page here: http://www.ihaveuc.com/find-a-doctor-near-you/ )

    so it would be great if you could add Dr. Bebington to the list.

    Take care and all the best to you and your family,

    -Adam

  2. jimmie October 24, 2013 at 4:34 pm #

    Hi Aphrael.Your ppst encouraging I have surgery schduled
    for March 2014.Like you I have learned to live with
    UC and compared to others haven’t had it so bad..but
    I have abnormal biopsy on last two colonoscopys.I have
    had UC for 29yrs..big risk for cancer so surgery it is.
    Crazy question but do you feel empty?Does it feel like
    something missing?Just seems like you would colon
    pretty major organ..Glad to here your doing good!My
    surgeron plans on doing a two part surgery..I’m really dreading the bag..Good luck with next step keep us updated.Thanks

  3. Aphrael October 25, 2013 at 12:17 am #

    Hi Jimmie

    A person would feel that you do feel empty considering you have a lot more space in your stomach area after the operation but apart from the expected pain and discomfort caused initially from the actual operation, you dont feel any different,no feeling om emptiness etc, especially once you get over the initial rough phase of recovering from surgery.

    As for the bag, i know how scary it is…i was terrified about what it would do to my relationships etc but the good part is, the only people who will even know its there is you and your intimate loved one and if they love you, they adapt to it as well since its only a temporary thing. But i do admit that it is still an adjustment.

    You will have to avoid certain foods for the first few weeks after surgery and stick to soft stuff while the inflammation etc settles in your stomach but its not so bad. The first surgery really is the worst and the only reason for that is cause its a shock to your system. If you keep that in your mind, that the difficult part really improves after about 1 week compared to 29 years of general discomfort due to UC it really is worth it.

    In your case, considering the abnormal biopsy history, the surgery will be a huge blessing! My surgeon told me that the mild discomfort you stand through during the surgeries is nothing compared to the pain of colon cancer. Just be positive! I can vouch that the surgery really will change your life and you will be amazed at the improvement in every aspect once you have recovered. A persons whole disposition changes cause you dont have the UC symptoms anymore.

    All the best with your surgery! Please feel free to ask any questions you have, i know how many i had before the surgeries. Thinking of you and keep us updated!

    Be brave ;-)

  4. jimmie October 25, 2013 at 10:20 am #

    Thanks!sounds good.will let you know how it goes.Be
    watching for your mext post how it goes with the pouch
    and keep you in prayers.Hoping for the best for you!

  5. PeterNZ December 4, 2013 at 5:32 pm #

    Thanks for the post.
    I’m meeting the surgeons shortly as it appears I’m in the same boat you were. Please let us know how you get on.
    Cheers,
    Peter

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