Ulcerative Colitis, Toxic Megacolon, and Surgery. Oh My!

After my initial diagnosis of Ulcerative Colitis years before this hospital stay, I had heard of Toxic Megacolon.  I only knew a little bit about it but enough to be terrified when I was told the scans showed I had developed it. If you have never been diagnosed with an Inflammatory Bowel Disease like Ulcerative Colitis or Crohn’s Disease then you probably haven’t heard of Toxic Megacolon. It basically means dilation of the colon, a potentially lethal condition that becomes toxic as the colon expands, dilates, and distends.

That diagnosis was immediately followed by the surgeons asking me if I wanted an epidural or an IV drip post surgery. The two surgeons that were in the room had a different opinion on which option was better so I asked the doctor I liked better based on the vibes I got from him in the five minutes I have known him which he would choose in my situation. He said without any pause that the IV drip is what he would choose so I told them that was what I wanted. Next, they had me sign surgery consent forms and gave me a quick rundown of what to expect. I asked a couple of questions, got a few short answers and once the doctors left I talked to my husband about this life changing procedure.

ospital bed

I was about to have a total colectomy, which means they will be removing my large intestine, leaving me with only my small intestine, a temporary stoma, and an ileostomy. I was also informed that this would not be the last surgery even if everything went as planned. I will need to have 2 more surgeries within the next year before I could ever think about getting back to what will become my new normal, if having a stoma could ever become normal.

I remember waking up with an epidural even though I clearly requested the drip and signed the papers stating that the night before surgery. I found out later that after the 3 and a half hour surgery while I was in recovery they decided to give me the epidural because I was in such intense pain. Apparently I was in the recovery room for another 3 hours and nobody asked my family how they felt about switching my pain control. I would think when you are as heavily sedated as I must have been fresh out of major surgery, I probably wasn’t the best person make big decisions although they say I signed another form stating I wanted the epidural instead.


When I was able to return to my room I couldn’t believe how much pain I was in. I told the nurses and doctors that I needed more pain meds and maybe this epidural wasn’t even working. They decided the only way to find out for sure was to unplug it for an hour and see if I am in more pain or if it stays the same. If I am in more pain that means it was working and it turned out that it wasn’t working because over the course what turned into about 4 hours I was still in a ton of pain before they decided to remove the epidural. I was in a lot of pain because since I woke up from surgery it turns out I wasn’t getting any pain meds until they finally hooked me up to the button that gave me a shot of pain meds every five minutes.

Even though my pain was finally being addressed I was having a hard time bouncing back from the surgery. The doctors blamed it on how long I was sick before I came to the hospital. They say a good rule of thumb to go by is for every 1 day you are sick, it takes about 3 days to recover. Since I was sick for weeks before I even went to the hospital I knew it was going to be a long road to regain my physical health. What I didn’t know yet was that the hardest part of this journey was still ahead of me.

You can read the end of this series by clicking here or part 1 by clicking here.Be sure to “like” supermom on facebook or subscribe to the newsletter so you never miss a post!


  1. What a scary procedure to go through! I am like you I hold off as long as possible before going into a dr I hate going in. That is awful the epidural didn’t work and how long you had to wait for them to figure it out.

  2. OMG! Wow!!! Praise God that you are growing better each day and may his healing power wash over you! I know the road a head may be rough but you are in my prayers and I know my Father is with you!

  3. So incredibly scary! With each new installment that I’ve read I just cannot get over just how much you went through! I’m thankful that you’re feeling better and that you have answers for what your health issues were.

  4. I have continuing gratitude that you are on the mend…what a horrific experience for you…I hope you continue to heal and keep us all informed of your progress. Maybe you sharing your experience will help someone in the future have the strength you have exhibited.

    • I hope to help others by sharing my story but the truth is that it really helps me to get it all out. I love when something I write resonates with someone enough where they leave a comment or send me an email but I really do this because it is cathartic and seems to be helping with my mental recovery.

    • I always have something to say so you can count on me updating everyone.

  5. OMG!! What a scary procedure!! I never knew what that is!! Very informative

  6. Yikes, how scary that must have been! Being in the hospital is always nervewracking. I hope you are doing better now and have no more difficulties!

  7. What a terrible ordeal! My sister has ulcerative colitis, but has managed any flare-ups with medication. I’m glad you are through the worst now and are healing! I agree that it’s so important to get a doctor that you feel comfortable with.

  8. I’m so sorry you’ve had to go through this! Having medical issues is bad enough without there being a lot of pain involved. Hopefully you are on the track to feeling better and can put all this behind you!

  9. The amount of pain a person’s body can take is amazing. Having had epidurals myself, I know it has to be bad before they would override your request for the IV drip. The epidurals pose risks and side effects that the iv drips don’t. I can’t imagine all that you went through with this.

  10. We are our own best advocate when it comes to our health. Relying on doctors and professionals is important to gather information and make educated choices and obviously it’s imperative that family members be involved especially when we aren’t in any condition to be making decisions. I’m glad you are sharing your experience for others!

  11. What a scary thing to go through!! A friend of mine had ulcerative colitis and it was very bad! She decided to change her diet and started eating only raw foods. Since then she’s been feeling so much better. I don’t think this is as easy for everyone who suffers from this, as it was for her though.

    • I am glad that diet change is helping your friend, it helped me for a long time as well. I was on the specific carbohydrate diet but unfortunately I still had issues. It has helped so many and now that I am back home I am thinking about starting the diet back up again as it is the best way to eat!

  12. Dina Demarest says:

    I am so sorry that you have had to go through something like this! I had to go back and read before this and am so glad that you are speaking out for those that may be in similar situations.

    • I would love to be able to help others although at this time I have a hard time dealing and wonder how much help I really am at this point. Time will tell.

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