Is it Time to Slice and Dice?

megan-ccfa-300Introduction:

My name is Megan and I am from Victoria in Australia and am 22. I was diagnosed in Feb 2012 after months of living in the bathroom!

Some more about me:

I have just finished by degree in Biomedical science and I’m now doing honours in the area of cancer, although lots about UC keeps popping up! I enjoy (try to anyway) being outside and the beach, and just being with family and friends :)

Symptoms:

Multiple BM a day, about 10, blood, mucous, urgency, pain: the usual!

Is it Time to Slice and Dice?

After only having this disease for just over a year, I am meeting with a surgeon to discuss getting my colon out! I know its a big operation but I have tried sulfasalazine, mesalazine (tablets and enemas), imuran (which caused me to vomit every night) and the dreaded prednisolone, and nothing seems to work. My specialist has suggested another drug if I decide not to have surgery, but I am worried about the fact their are serious long term side effects and that I would have to come off it to have a family (the thought of getting better and then having to stop another medication is too much!)

Although I know that I would be lucky to achieve a complete remission, I mourn for my old life of rowing, swimming, horse riding and being able to eat a meal without having to jump up and race to the loo! My family and partner are very supportive of my decision, and I am happy, although I have no idea how other people put up with this disease for decades! I am just wanting some feedback from other people around my age (Im 22) that have had the surgery, and if they love or hate it, and if they have a J pouch or stayed with the bag. I would love to have the J pouch eventually, although the sound of frequent BM with this procedure doesn’t sound good to me, and it might be nice not having to ever have to sprint to a toilet again haha. Also, did people contact any support groups/ ostomy nurses for this surgery and if so, how did they go about it?

Any feedback that anyone can give me regarding the surgery and if they are happy they had it done (or not) other medications and support groups would be awesome! I am happy to be contacted on meganlearls@gmail.com if anyone is willing to share their stories with me!

Medications:

currently:
15mg prednisolone
1 x enema per day
4.8g of mezavant tablets/day

written by Megan

submitted in the colitis venting area





10 Responses to “Is it Time to Slice and Dice?”

  1. Nichole
    NicholeApril 29, 2013 at 3:53 pm #

    Hi Megan,
    I’ve had my J-pouch for 8months now. Im doing fine! I only use the bathroom around 6 times a day. I had my ostomy for 6 months. You have a hard decision to make. For me I was ok with having my colon removed, Im not a big fan of prednisone….and Im thankful Remicade did not work because I did not want to take it anyways. You can read my story, Its about 2 story under yours……. Colon Free Is The Way To Be………… thats the name of my story. Good Luck!!

  2. JasonMay 1, 2013 at 5:56 pm #

    I had jpouch surgery a few months ago. I am three mo than post takedown. And it was without question the best decision I ever made. I feel better now and am in better shape than I have ever been. The recovery from the surgeries are a little rough, but totally worth it in the end. Best of luck to you!

  3. Megan from Australia
    MeganMay 2, 2013 at 8:54 pm #

    Hi Nichole,

    Im glad that you are happy with your decision, I have also decided to have the surgery! I’ve had nothing but trouble with the drugs and will be glad not to be on the dreaded prednisolone anymore! At this point colon free is definitely the way to be! Even if some miracle treatment is discovered in a few years I will be glad to have been pain and UC free in the meantime!

    Jason,

    Im so happy for you that you are feeling better than ever before, any tips for recovery for me? Is there anything I can do pre surgery to make it easier to recover?

    Thanks guys :)

  4. KristenMay 2, 2013 at 9:32 pm #

    Hi Megan! I’m 22 as well! I was diagnosed with UC when I was 18 and had a very miserable year with it. I tried lialda, remicade and prednisone with no success. I had my colon out just before I turned 19 and immediately felt better without it. I had an ostomy for 6 months before I got my jpouch connected. I’m so glad I have a jpouch because I didn’t want to live with the bag any longer than I had to. So glad I had the option. I’m pleased with my results and feel great without my colon. It’s not the easiest thing to go through and sometimes can be really tough but I’m happy with how things turned out. Good luck with everything!!

    Kristen

  5. KMay 3, 2013 at 7:11 am #

    Hello Megan,
    I was somewhat older (32) than you when I had an emergency ileostomy three days after the diagnosis of uc. (I had apparently had it mis-diagnosed for a year or two, and by then was in a pretty bad flare.)
    Anyway, I was diagnosed on a Wednesday and admitted to the hospital. And on Saturday morning the colon perforated, so they took it out that afternoon.
    So I have had the ileostomy for 38 years now. There are a few challenges, but it is wonderful to be well. And I completely agree with you that I have no idea how people live with uc for years. It is physically and emotionally such a horrible disease.
    All the best in whatever decision you make. At 22 you deserve to be well.

  6. Megan from Australia
    MeganMay 8, 2013 at 1:14 am #

    Hi Kristen and K,

    It is encouraging to hear that you are happy with your surgery and that overall it has all worked out for the best :)
    Kristen what were the main things that you struggled with? Its weird because Ive made the choice to have surgery but sometimes I just burst into tears for no reason, but I am glad its happening, so Im a bit confused haha. I went for a visit with the ostomy nurse today at the hospital, and they gave me lots of booklets and DVD’s, and a few different colostomy bags to have a look at. It has a little foam stoma to stick on so I am getting around with a clean colostomy bag attached as a practice :) the plastic is a lot thinner than what I imagined and no where near as bulky as I thought. (Yay!)
    K would you consider the J pouch surgery or are you happy with the ileostomy?

    Thanks guys!!

    Megan

  7. MikeMay 11, 2013 at 6:04 am #

    Megan,

    It sounds like our cases were very similar. I progressed through every medication and none of them ever put me in remission. I tried lialda, asacol, canasa, rowasa, imuran, cimzia, remicade, and humira and the SCD diet. I guess it was a very stubborn case…

    Anyway… To your question of ileostomy vs. permanent ostomy. I worked through this with my surgeon. I told him that I couldn’t handle the thought of heading into two or three surgeries right away and the impact to my career. He understood and told me that he could do a first surgery removing the colon, giving an end-ileostomy, but leaving the parts intact at the end of the track to accept a j-pouch if I desired later. This means that it will take two more surgeries if I decide to have a pouch, but it also means that I have a bit of time to make that decision and work it into my life on my terms. He even said I could wait a couple years if needed.

    Everyone is different and j-pouch will be right for some, and not for others. My surgeon made one comment that stuck with me though. He said that his ostomy patients tend to be happier because they have accepted they are living a completely “new normal” where sometimes his ileostomy patients are let down because they were hoping to get back to their “original normal” and it won’t ever be that way.

    As for me, I’m 5 weeks out from the first surgery. I was lucky that he was able to do everything laparoscopically. This greatly helped recovery. Also, because he wasn’t forming a pouch kept him almost completely out of my pelvis area which also greatly reduced the chances of infertility/impotence as well as bladder issues. This is important to me as my wife and I don’t have kids yet. If I had to decide today (which I don’t :) ) I would decide to keep the bag. It really hasn’t been that bad. I’ve taken a couple road trips, began my commute to work again, sat through and led long workshop style meetings, gone to a baseball game, etc. I’m finally over worrying about where the nearest bathroom is and whether I’ll get there before I have an accident! I’m sure I’ll have tough days ahead, but so far the good outweighs the bad.

    I’m not trying to convince you one way or the other, I’m just hoping to provide some insight into my experience. I’m sorry you and all of us have to deal with this. I wish you the best of luck moving forward! Whatever you decide, trust your gut feeling and don’t look back. Second guessing will only drive you crazy!
    -Mike

    • Megan from Australia
      MeganMay 13, 2013 at 12:19 am #

      Hi Mike,

      Thanks for your comment! I think that’s what I thought about the bag VS J pouch, at the moment I want nothing to do with finding a toilet in a hurry and Im worried that if I went for the J pouch in my head I would expect to be able to have 1 awesome BM every morning, which probably isnt do-able!

      Im glad that they were able to prevent the risks to your bladder and reproductive system, its hard to take in all the things that could go wrong with the surgery! But its gonna be good to be rid of my massive basket of drugs!

      When you returned home from the hospital were you mostly just resting with the aim to move around a bit each today? Just today I have had to defer my honours studies for a few months because of zero energy levels and the surgery; I cant be halfway through filling a bunch of test tubes to drop them and race to the loo!

      Anyway, feel free to keep me updated with any tips if you think of anything!!

      -Megan :)

  8. MikeMay 17, 2013 at 9:49 am #

    Megan,

    My recovery went pretty smooth. Surgery was on a Wednesday and I was discharged on the following Monday. The only complication involved my ureters. They put stents in them to protect them, and that kind of riled things up a bit. I ended up with a bout of spasms each day that felt like a kidney stone. This lasted about 6 days. This was terribly painful, and kept me loaded up on pain meds. I’m not sure the pain meds even helped other than they made it easier to pass out to escape the pain.

    Because of the minimally invasive approach, the rest of the recovery was pretty straight forward. When my kidneys and ureters were behaving themselves, I could move around limited mostly by stamina not pain. There was pain, but it felt more like I pulled something really bad in my ABS. It was tolerable. I did ask for help getting up from bed, but was pretty good once on my feet. I think I was off pain meds and able to move around fully on my own (for short stints) within 7-10 days from Surgery. They encouraged me to walk as much as I could to speed recovery.

    As far as tips… Familiarize yourself with the steps that go into changing a bag. There are some really helpful youtube videos that walk you through it and give a first hand account from people like you and me that have to figure these things out. There are a million different combinations of products, pastes, wipes, powders, etc. Having some familiarity with what they are, when you might want to use one rather than another will help you get your head around this and help make sure your WOCN nurse is on point. It also helped me keep calm when I first went through it which can be a nervous experience even with a lot of assistance. You don’t have to be an expert, but I think the exposure now will be comforting later on.

    Regards,
    Mike

  9. KMay 18, 2013 at 6:56 am #

    Hi Megan,
    I just realized you had left me a question after my May 3 response to your posting.
    After 38 years with an ileostomy, I guess I would not think about changing to a jpouch. That procedure had not been “invented” when I had my surgery, and by now I have gotten very used to having an ileostomy Also I have recently had some unrelated major surgery, so am hoping for no more!
    As before,I wish you all the best as you make decisions about your future.

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