Preparing for Surgery at Age 21

My name is Emily and I was diagnosed with UC in May 2013. I just turned 21 years old and I am preparing to have my first of 3 surgeries in about 6 weeks to remove my colon (assuming I can make it that long!)

Some more about me:

I am a nursing student from Portland, Oregon. I love running, baking, and doing pretty much anything with my friends and family!

Symptoms:

Currently my symptoms include about 10 BMs every day and pretty constant abdominal pain. I am also on prednisone though, which tends to keep things somewhat under control (and remicade… which hasn’t done anything for me) so I am able to go to school for the most part although it is getting harder as I taper the prednisone and get closer to my surgery.

Preparing for Surgery at Age 21

I started having diarrhea in January 2013. I was running a lot, so I thought it had something to do with that and didn’t worry too much. I also started feeling very fatigued, but I was a very busy college student so that wasn’t too concerning either. I decided to “power through” until the semester was over, which is when I started seeing blood. A colonoscopy quickly revealed that I had moderate/severe UC and I was started right away on prednisone and Lialda. I also had dangerously low iron, so I began iron infusions as well. In September 2013 as I tried to taper off the prednisone (in hopes that Lialda would keep me in remission), I ended up in the hospital with 20+ bathroom trips/day, lots of blood loss, extreme weight loss & dizziness (low BP and very low iron). I started another prednisone taper, this time with 6MP, which eventually failed as well. At the same time, I tried cortifoam, probiotics (and LOTS of other vitamins/supplements), the SCD diet for a few months, and pretty much anything else people recommended. Finally, I started remicade, which I had high hopes for, but unfortunately that also failed and left me in the hospital again (January 2014). The surgeon came to talk to me in the hospital about the possibility of surgery, but I pretty much immediately dismissed this option. I think I was in a bit of denial and still holding out hope for the remicade. My GI decided to do a double dose of┬áremicade and move it to every 6 weeks to give it one last try. I started my semester of school the day after I was discharged from the hospital.

I have now had 5 remicade infusions (3 of them double doses), and unfortunately it has done pretty much nothing. I am also currently on prednisone, which is the only thing that seems to slow the frequency and stop the blood, but even that isn’t working as well as it did in the beginning. Also it isn’t good to be on that as long as I have, so I can’t be on that any longer anyways. So, now I have accepted that surgery might be my best option. Right now, my plan is to try to finish my semester which ends May 1, and my surgery is schedules for shortly after that. My GI doc is not too excited about waiting that long, but I am determined to not miss any more school if I can help it :) If I get any worse in the next 6 weeks though, I know that my health comes first and it is better to go into the surgery as healthy as possible.

I still can’t believe how fast all of this has progressed (it hasn’t even been 1 year since my diagnosis), but at the same time it feels like I have been dealing with this for a long time. Even though the surgery is scary, I am excited to have some control over my life again. I am ready to have a normal social life again instead of always worrying where the nearest bathroom is, eating pretty much nothing, and having embarrassing accidents in public. Not to mention getting rid of the puffy prednisone face… I am SO done with that! I am so encouraged by all the success stories and everything I have read on this site so I wanted to get involved in hopes of helping someone else as I start this journey as well.

written by Emily B

submitted in the colitis venting area





11 Responses to “Preparing for Surgery at Age 21”

  1. barbMay 1, 2014 at 9:27 am #

    Hi Emily,

    Sorry you are going through this at such a young age =(. I have been battling this disease for 15 years now and currently doing remicade treatments which are working but when they stop working I will be in your shoes. All I can tell you is there are other people on here who have had this surgery and say it’s the best thing they ever did! So sending prayers your way and hope it all turns out ok for you. Keep us updated =)

    Barb

  2. CheyenneMay 1, 2014 at 9:31 am #

    Best of luck to you, I really hope this improves your quality of life :)

  3. fatmaMay 1, 2014 at 11:31 am #

    I hope for you all success in you surgery and we wait good news

  4. bevMay 1, 2014 at 4:20 pm #

    I’m on board with surgery over the meds any old day! The meds used to treat UC are poison and they can damage the body in other ways, many that are also irreversible.

    I don’t think that anyone who opts for the surgery ever regrets it.

    Cheers and all the very best:)

  5. JoanieMay 2, 2014 at 7:18 am #

    God bless you, Emily. You are strong for sure. You will have a healthy life ahead of you!

  6. KatieMay 2, 2014 at 7:21 pm #

    Hi Emily!

    Sorry to hear about your struggles. Your story sounds so similar to mine. I am also 21 years old, a Canadian nursing student and am preparing to have surgery (in 11 days to be exact). I have suffered from UC for the last two years and have failed every medical (pharmeutical) options offered to me. Long term, I believe having surgery is the best option to get off of all the horrible drugs. I know it’s scary but from everything I’ve heard, the pros of the surgery definitely outweighs the cons. Just know your not alone and I wish you all the best.

  7. Zoe K
    LeeMay 2, 2014 at 10:26 pm #

    Sorry to hear you are going through this at your age. Mind I ask how low was your iron that you received iv iron infusion ?

    I also been having UC over 2 years now, I totally understand how you feel. You are not alone. I am RN and due to this chronic disease and my flare up, I have to take time off from work. It’s difficult to accept the fact that we have to go through this at the best time in our lives but this is life, no perfect and never know what will happen next. The longer I have this disease, the more I started to know and accept this. I think no matter which avenue in life we may end with, it will never be easy. But I try to tell myself it’s not end of life. Even living without the colon, you will still have life maybe better in some ways depends on how you look at…

    Wish you the best and take care !

    I guess you are still continuing your nursing program and career. Being a. Nurse is definitely a rewarding career but it’s stressful and demanding.

    We should take care of ourselves first then we can look after patients.

  8. Tracy PerkinsMay 3, 2014 at 6:01 am #

    Good luck Emily. I hope you do find comfort in your decision and find your quality of life again :)

  9. Camille M
    CamilleMay 3, 2014 at 6:55 am #

    I am sorry to hear about your upcoming surgery. Emily. There is one thing that has really made me turn the corner. It is low dose naltrexone. It resets the immune system while you sleep, but few MDs use or know about it, because is not a profitable drug, hence little research, no marketing and now knowledge amongst most MDs. There are so many other drugs they should try before they do this surgery. How many GIs have you seen? You should have at least one, if not two more opinions. I’d go to the best med school in your area. I am in Chicago and we have 4 right here, so I am lucky. I begged my doctor to prescribe low dose naltrexone for me and it is a miracle drug. I still take azulfadine, folic acid, a plant-based iron, and I’m whittling down on immuran. I was on 4 pills a day. Now I’m down to 2, about to go to 1.5. Please check this out http://www.lowdosenaltrexone.org/ and get more opinions! Good luck!

  10. EllenMay 13, 2014 at 3:02 am #

    I had the surgery 2 days before my 21st as an emergency as I had toxic mega colon by that stage, it was daunting and horrible and I initially said no but now that I’ve had all 3 surgeries everything is so much better! I’m suffering other unrelated complications but in relation to Ulcerative colitis it was so worth it!

  11. Tim OlsenMay 21, 2014 at 6:50 am #

    I feel for you, when i was 18 afer my first semester in college i had to move back home as i was going 30+ times a day and my hemoglobin dropped to 3.9. If it wasn’t for winter break and me going home to my family who could see the my issues clearer than i could ( i’m stubborn) i probably would ave died. It has been 4 years since then, 2 of them I spent more time in hospitals then out, totally 23 hospital stays. i went through about 7 doctors as i refused to get surgery. After a HUGE amount of discipline to follow an extremely limited diet for 3 years ( worse then gaps intro) and finding my issues whether they were gi infections, or sensitivities. I can say without a doubt, not getting my intestines removed was the best decision of my life. I personally have no issue with people who make that decision but i couldn’t live with that decision myself. I now have completely normal bowel movements. I still have an extremely intense diet regime but the ability to go out and do what i love and have relationships with people i love makes it all worth it. I will pray for you and your health and i hope things get better for you, there are what i call the three musketeers of UC. Gaps, FMT, and LDN.

Leave a Reply