Cyclosporine or surgery?

I am guessing that his doctors are opting for cyclosporine because it works quicker than biologics like remicade. I remember in one hospitalization that was the recommended drug and I opted for the slower acting remicade instead. I am steroid refractory too and unfortunately there are not a lot of options when pred does not work.

Is he on IV steroids? Some people who are slow responders to steroids will respond better to an IV. But I assume he is on an IV at 94lbs. That is super scary.

I personally would opt for cyclosporine over surgery but that is a very personal choice. I know you have probably already heard this from his GI - but not everyone gets side effects from cyclosporine.

I hope he gets better soon.

You're right that cyclosporine is a short term rescue medication like prednisone (but very different in action/method). I'd ask your gastroenterologist on what he'd pair it with.

If I remember correctly, you didn't want to use immunomodulators (Imuran, 6mp, aza) due to your concern about elevated lymphoma risks with adolescent males. So, scatch those ones. There's methotrexate a little different than the other immunomodulators Not sure if it carries the same black box warning).

He didn't respond to remicade, but you could try other medications in the same class (humira, simponi). Entvtio is a different class of biologics with a different mechanism of action.

I'd continue exploring the surgery route, have a consultation (question and answer period) with a colorectal surgeon. The j-pouch is the most common uc surgery, 3 surgeries total, first removes the large intestine, second forms a pouch made of the end of the small intestine, third attaches it to the anus. Normal bowel fuction is kept after it's complete and uc is gone. It's not easy, each surgery has a recovery period. And their are risks (like abscesses).

Tough choice for sure. Good luck,

I can't tell if you son is in the hospital at this time or not.
IV cyclosporine is colon rescue therapy, which did not work on my son.
But it works in some, which gives time for other meds to perhaps start to work.

If he is home please STOP the vsl#3 and fish oil, both might make the condition worse, as they do me.

Besides that if he does need surgery,the fish oil is messing with his blood coagulation time, also no Vitamin E.

We knew it was time for colectomy, after my son failed on IV cyclosporine and IV steroids, he was sent
home, he was crapping blood 36 times a day, I counted.

Again, so very very sorry.

Old Mike

Post Edited (Old Mike) : 11/29/2015 5:26:25 AM (GMT-7)

A regular poster, You-See, recently went into surgery in a weakened state. Everything went well!

You-See said...
Heading to Cleveland clinic tomorrow for my two week stay, first week is to have a nutrient feeding IV to better prepare me for the surgery. The second week will be surgery and recovery. Very anxious, nervous, and excited. It's been almost half a year in this flare and as of late my symptoms have gotten a lot worse.

I understand your concern about your son's weight, but it can be done regardless of it.

www.healingwell.com/community/default.aspx?f=38&m=3535554&p=2

He was 21 at the time, down to 125 pounds.
They kept him on TPN/pic line, for about a week and a half to fatten him up a little.
The initial admission was for dehydration and malnutrition, when he went to the big city hospital.
At the time he had open surgery which is a lot more difficult than lapro.
Old Mike

I chose cyclosporine over surgery about a year ago. It did mean that I managed to get away without surgery but the side effects were really rough! I started it in hospital to try and keep my symptoms at bay while the azathioprine kicked in but unfortunately it never did! I was then offered infliximab instead which I started about mid-June which has worked, and I was able to come off the cyclosporine a few weeks later. So I was on cyclosporine for about 9 months in total and during that time I felt really rough, the side effects were awful!

I think that if the infliximab stopped working and I had to choose between cyclosporine and surgery now, I'd go with the surgery; although it improved my UC symptoms I still felt just as rough as I did whilst flaring because of all the side effects! It does work but it doesn't necessarily give you a great quality of life.

It is a really difficult decision though!

I think the problem in my case, was that I had tried all the meds, so even if I did cyclosporine, there was nothing left for maintenance. That's why I didn't think it was worth it for me. If I had remicade as an option for maintenance, I might have given it a shot. It could be worth it to give it a try and maintain with 6mp and Entyvio. I also think at 15, he has to be on board with the decision. I know some people just want to have surgery and be done with this illness and some people desperately want anything but surgery.

So surgery is tentatively scheduled for Wed. We are in hospital now. He is having imaging of small intestine today to see if there is any chrons. My son is actually excited for surgery. He is so tired of feeling sick. He's had enough. He said "I can't wait to have a bag so I can sleep through the night". We have some of the best Drs and surgeons, so I have complete trust in them. And my husband went through this 10 yrs ago and is doing well. Thanks everyone. We can see the light at the end of the tunnel now.

VM,

I agree with NSSG; that is great news, especially the fact that he is looking forward to it. That's one of the largest hurdles that people going into surgery have to deal with. I'm sure his father will be able to help him change his ostomy.

I remember waking up from my colectomy and just feeling healthy again.

Best of luck to him on Wednesday. And my thoughts are with you as a mom....I know how tough this must be on you. He will do great and soon enough this will be behind you all. This week is Crohns and Colitis awareness. We need much more awareness for IBD as its effecting more and more very young people.

vinnie's mom, are you around? Any news on your son? I hope he's doing well.

NSSG,

She has been posting on J-pouch.org, I think under the name Momma. Her son was still having some urgency with the remaining rectum after the colectomy; normal stuff for a step-1 of 3 steps.

He was also nauseous after the surgery for the first week or two. Both symptoms are very common after colectomies.