Will Surgery Be My Only Option?

My name is Olivia, I’m 18 and I’ve had IBD for about 2 years now. My mother had Crohns and despite numerous scans, tests and hospital visits I’m still in the 10% of people who are difficult to diagnose between Crohn’s and UC for sure (although its seeming to be UC). I’ve been on so many courses of Prednisone and I’m gluten intolerant, (following a strict diet already) that I’m losing hope because nothing is helping my ongoing flare ups! :(

My Story:

I know there will be many people with UC with much worse symptoms and situations than mine, but I am curious to find out if anyone has advice or stories very similar to mine!

Because of my age, the scariest thing is the idea of having surgery yet. My specialist is demanding that I shouldn’t be put on any more courses of steroids because of the risk of osteoperosis. I have an anxiety/stress problem which adds to the UC and the amount of flare ups I have.. as well as any foods containing gluten which I avoid.

I’m curious as to whether I’ll be left with surgery as my only option, are there alternative treatments, or is ongoing prednisone an acceptable answer…? Also, have people recovered from UC or is it usually a life long thing? So curious to find out more and see what other people have done to help themselves!!

Medications So Far: Prednisone, Azathioprine, Enemas, Pentasa, stress relief tablets..etc etc

Submitted by Olivia in the Colitis Venting Area

6 thoughts on “Will Surgery Be My Only Option?”

  1. Olivia,

    I only have UC for 6 months when my only option left was to have surgery. It was the best decision I have ever made. That’s not saying it was an easy journey, but it was well worth it in the end. If your medical doctor is against putting you on another course of Prednisone, I think you should listen to him. Do you trust him and have a good relationship with him? If you don’t, you could always get a second opinion. Has he ever brought up Remicade? It seems to me that they will have a person try Immunosuppresents such as Imuran or the biologics like Remicade and Humira – before resorting to surgery, as it is done as a last option or in emergency situations. Best of luck with everything!

  2. OrdinaryWorldWhereRU

    Mine refuses to use any more prednisone for the same reasons, it is just too hard on the body and my bones. There are many other drug options before surgery comes into play. Mine won’t even discuss it until we exhaust all the drug choices to get it into remission. I am having my first Remicade infusion next week. Thank heavens for the RemiStart program.

  3. Hey Olivia, I’m 18 and was diagnosed about two and half years ago. I’m experiencing basically the same thing as you, and I’m pretty scared about getting surgery…
    Although, I’ve got an appointment with the surgeon, because I’ve been on prednisone for so long,( I’m also on Imuran and Pentasa), and I refuse to do Remicade.
    I hope that perhaps you find an alternative. I would love to have an alternative to surgery too, so maybe we will find something.

    Good luck :)

  4. Hey Olivia. I don’t have UC but my son was diagnosed at the age of 10. This summer, at the age of 12 he had his colon removed. He was exactly like you.. so many tests and we were told they couldn’t be 100% certain it was UC vs Crohn’s. He had become steroid dependent – which sounds like where you may be right now. He did everything, medicine-wise, that he could over the last 2 years. Metranidozole, Sulfasalazine, 6MP, Asacol (9 pills a day), Prednisone, Remicade, Rowasa enemas..and still, could never get completely off of the steroid. At one point he was taking 26 pills a day – he was 11. There comes a point when enough is enough, and he had had enough. He did the Remicade infusions to get him to this summer and in May he had his colon removed. July 21st (7 weeks to the day after his colectomy) he had the takedown and his Jpouch is functioning wonderfully. We have to continue to hope and pray that he remains healthy, but in his own words (shortly after his colectomy,..as he’s dealing with the ileostomy) “I am so glad to be rid of that stupid colon.” He’d rather have that pain in the ass bag for life than to have the cramps and medications that UC brings.

    He will be starting 7th grade on August 24th.. disease free.

    You will know when you reach the “enough is enough” moment. Good luck to you and keep your head up. Remaining positive is what I think enabled my son to conquer this disease. He’s come out, on the other side of UC, colon free and happy. It definitely was not an easy road.. but it’s a road that needed to be traveled.

  5. Hi Olivia!! believe it or not I’m also an olivia. I’m 19 and was diagnosed a year ago with some pretty bad UC. I’ve been lucky to respond to medicines, but know that there are so many other treatments you havent tried. If you’re not ready for surgery, you don’t have to be. You just have to dedicate yourself to extreme diets (SCD? you should look it up if you havent heard of it), Aloe Vera, I’m personally on mercaptopurine and it’s been amazing, probiotics, and mostly- Lifestyle changes. I’ve found that my mood is directly correlated to my flares, so I have to really stay upbeat (which really can be hard some times), some people have found that nicotine helps their UC, there’s a million different things you can try (remicade and humira are pretty strong medicines too). I think you should research treatments and sit down with your doctor and see what’s right for your situation :)

    I hope this helps, I feel like im mostly rambling :P

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.