Remi/Surgery? Advice please.

Hi all, I'm new to the forums but not new to this disease that certainly does suck. In need of some advice as my topic kind of says on whether I should try remicade or do surgery. First of all, I have severe UC in my rectum but as it goes up it becomes moderate and then mild; however, I am 18 years old and am taking a year off to work and save money while deciding what I want to do with the rest of my life. I've had UC for several years now along with Celiac disese, both being autoimmune diseases, so yes, while many of my friends during high school had everything from pizza to MCD to burger king, I - on the other had, had a gluten free lunch along with the urgency and diarrhea from UC (it sucks, it really does).

The problems I'm facing right now are the fact that to be frank, I've been using pred as my life saver to save me from urgency and blood and diarrhea when I go into a flare, but I've been on it 4 times this year, this being the 4th and longest time on pred right now. I am currently at 35mg, was at 40mg for a month and am tapering. I have a good GI, who is new and has decided to put me on remi from my last colonoscopy in October, she says its bad, raw, and really bloody in my rectum. Unfortunately for the month that I've been on 40mg, it usually takes all blood away but it hasn't this time, and thus I think I've become steroid dependent.

I need advice on whether I should do remicade or start preparing my sad, lonely, broken, young heart for even more struggles of surgery. I am willing to try remicade, the only problem is that I'm so young and I feel like it's a bad idea for me to be on it for my entire life, thus its not really a longterm nor lifetime solution, like surgery is. I'm also scared that from my colonscopy, my GI said my small intestine is almost fully healed from a gluten free diet for my celiac disease, I certainly do not want to screw that up....but am also scared they might find out sometime down the lane I have crohn's.

I have an app next week with my GI and I need to be prepared emotionally and physically, because, I've come to the conclusion that this is not working out and I have to try to find another solution, thus I need to be prepared to try remicade or another treatment. I just feel like I'm kind of living a trapped life and everyday I live in fear. I'm 18, young, and the truth is... I'm not happy. I live everyday thinking of my next BM. I don't have many friends left because its hard to maintain friendships (especially on pred). I feel like a fat, insecure, marshmallow from all the weight gain. Some days I'm a basket case and don't even want to get out of bed. I take baths, read, have a heating pad. I take 6 asacol a day, 35mg pred (tapering), multivitamin, starting supp's, tried VSL, take calcium, vitamin D, and iron supp. I tried Imuran and I could barely move my stomach was in so much pain. That's out of the question. I just feel like I need to start taking back my life and get this under control so any advice would be helpful as I'm feeling like a total basket case right now and try to be optimistic when really, this is such a crappy disease and I get sad thinking how I got the short straws in life.

I'd take remicade, it's pretty quick working 4-6 weeks to know if it works at all for you or not (60+ percent odds it will improve things), if it doesn't then consider the surgery option. Generally, it's preferred to keep your large intestine, when possible, as remission can mean the best quality of life for most. Remicade put me in remission and saved me from prednisone-dependence and a year of continuous prednisone. Remicade and other biologics can sometimes work miracles, I'd give it a shot; I'm at 1 bm a day. Sadly, it doesn't work for everyone. Surgery can be a life saver and bring back the quality of life for many who've failed other treatments (95 percent are happy with the outcome), but it's a not to be taken lightly, can involve complications, and typically involves 3 separate surgeries, each with recovery periods. In the end you're looking at 4-6 nonurgent bms a day with j-pouch surgery but with no worries of future flares, certainly in life, and no worries as uc is gone.

Prednisone can damage your body in irreversible ways (osteoporosis, glaucoma, type ii diabetes, etc), I'd not want to dance with that devil for longer than is necessary. 4 times in a year is a lot.

I'm sorry to hear you are struggling. I would try the Remicade, primarily because it may help you get out of this flare and off the prednisone, at least in the near term. Even if you decide to move forward with surgery, it's best to do so while you are as healthy as possible and ideally off the prednisone altogether.

I had a very similar thought process as you when I started biologics. I was seriously questioning my quality of life being dependent on biologics and immunomodulators and continuing to try to medically manage my disease vs living with a jpouch. In short, I failed Humira while on 6MP, then tried Remicade - again, while taking 6MP. Remicade put me in remission long enough for me to research jpouch surgery, interview surgeons, etc. and I was grateful to have that time to do my homework and get healthier. When I started seeing blood and experiencing urgency despite the Remicade, 6MP and rowasa enemas, my GI suggested Entyvio or Simponi, but I was ready for surgery.

Ultimately - even though the surgeries are tough to get through and come with risk - I'm happy I decided to move forward with surgery before trying any of the other biologics. The odds for a successful surgical outcome are good, I realized it would be easier for me to get through surgery now vs when I was older and potentially in a more dire condition...important since I felt that a colectomy was inevitable for me given the extent/severity of my disease...(you may want to read this NIH article which covers this topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337560/ ). I viewed surgery as a more permanent treatment option and I was excited to get off the meds, no longer worry about UC flares and no longer have annual colonoscopies.

Best of luck no matter what you decide!

I was in your position at one time and I decided to give the Remicade a try. I ultimately eneded up having to have surgery anyway but I'm glad I gave the remi a shot.

I had j pouch surgery five years ago and it's been a blessing. It all turned out the way it was supposed to. These decisions are tough. Please prepare yourself to the prospect of having surgery in the future though. Even if you're on the Remicade you should interview some surgeons just in case to be prepared. Always good to have a plan B. Best of luck!

atwoodt said...
Ultimately - even though the surgeries are tough to get through and come with risk - I'm happy I decided to move forward with surgery before trying any of the other biologics.

Best of luck no matter what you decide!

Dx UC 2004
Previous meds: VSL#3, Asacol, Asacol HD, Colazal, Rowasa, Pentasa, Canasa, Cortifoam, Cipro, Flagyl, 6MP, Humira, Remicade, Prednisone, IV Steroids (Solu-Medrol and Prednisolone)
Hospitalized several times for UC flares, received blood transfusions every time, average stay ~6 days
Completed step 1 J-Pouch on 8/31/15. So far, so good!

Follow my story at http://fyouuc.blogspot.com/

Excellent blog atwoodt, I read through all your posts this morning. I'm a knowledge-junky, and don't like surprises with uc. So, it's facinating, to me, to read through a detailed description of your experience. Make sure to keep updating through your takedown!

And good luck!

I am sorry for your pain- I know it well. Try the biologics, get off the pred. as soon as you can. It works less good and causes too much long term damage to be your go-to drug.
The Remicade could buy you precious time to get thru school, get healthy and consider the next steps( if there are to be next steps). You will feel so much better if it works for you and it has a good chance of doing so. I agree that combining it with 6mp is a good idea. Young people have impressive immune systems that put up quite a fight. Don't give up on it too quickly either-if your rectum is stubborn it takes awhile. Keep us posted.

I was in your position recently. Debating taking scary sounding long term drugs like remicade vs surgery. I am 28 and was diagnosed at age 20. Been flaring every other year since then. I feel lucky not to have gone through this when in highschool, like you experienced.

For me, the prednisone doesn't work. Never has made a dent. IV steroids did, but obviously that isn't a long term solution. I don't plan on trying prednisone ever again. It isn't worth it, especially considering it did nothing for me.

I have a friend that also has UC and had surgery last year. Her surgery has gone very well and is living a normal life again. It gave me a lot of hope that this could be MY answer too.

Still, that is a huge step, and one that involves compromise. Instead, my doctors persuaded me to try remicade. I consider this my last resort before surgery. I keep asking myself how many years I am going to allow this to take from me before I do something about it.

I had my first infusion 2 weeks ago and am happy to report I am almost in full remission.

Could it stop working? Yeah, it could. Could surgery still be in my future? Certainly. But for now, I am on my way back to normal.

It is your decision, but if it were me, I would try to find any solution that doesn't involve steroids, be that remicade or surgery.

Good luck.