While doing the preliminary bloodwork I discovered I was JC virus antibody positive, which when exposed to the trial drug can result in the development of a potentially fatal brain disease called PML. And that was the end of that option.

For the next year, I coasted by. My gastro here in FL put me on stable doses of my meds to keep me well enough for surgery but not pumped with biologics (so I would require a 2step and not a 3step). He's been amazed that I've been able to be as normal as possible for the past 5 years with pancolitis.

I met with a top surgeon at the FL Cleveland Clinic and am scheduled to have a 2step jpouch surgery on August 8th. Before my surgery, my gastro and I decided to have one last look at my "soon to be removed colon."

On July 11, less than a month from my surgery date, my biopsies and slides came back saying that I no longer had pan colitis. The right side of my colon appears normal. The left side is a mayo 2 and rectum remains a mayo 3 but has "visibly improved healing." My symptoms remain the same (the bleeding has never stopped, but does range from small to pretty bad amounts) and I have severe bone and muscle pain from the steroid use. At this point, my doctor and I are at a loss for words. He's definitely happy with these results but also knows he just messed with my plans for the next year (I had graduated college one year early to make sure I had enough time to have the surgery and heal well). I have no idea what to do now.

He wants to start me on a new biologic drug called Vedolizumab that was just FDA approved and is supposed to work differently than other biologics because it is "gut-specific". He said that within 9 weeks of the infusions he will be able to tell if it worked or not through another colonoscopy and hopefully wean me off steroids (FINALLY) I've heard great things about it but started this drug also means:
Now if I try it and it doesn't work I will need a 3step surgery because when a biologic is in your system it decreases ability to heal, there is no data older than 5 years on how this drug reacts with people because it is recently approved, Frankly I'm so tired of medication and the quality of life the way it is I was so excited to have the surgery and get some sense of normalcy back and now this happened. I know I should consider it a blessing and a second chance but I was so ready for surgery. I don't want to be on these toxic drugs for the rest of my life. I have never been in a full remission in 5 years and it has affected every single aspect of my life, So far every med I have tried only works for a few weeks and then fails, so why should I take such a leap of faith and trust in this one?
I don't want to have regrets. I know that if something goes wrong with my surgery and I know I didn't try this one last thing I will regret it forever. But to be honest, I was so ready for surgery I don't even want it to work (as bad as that sounds) and If I don't even want it to work, what's the point of even trying it? Maybe it'll be a miracle but can you blame me for thinking of it as a lost cause?

I have to give my doctor an answer soon and possibly cancel my jpouch surgery on August 8th. Can someone please give any advice? Do you regret anything after having your jpouch surgery? Did you wish you had tried anything else?

In my mind, you've been on steroids 5 years too long already, and you are grasping at straws for the "miracle" cure. Sure, this new biologic may give you the remission you seek, but, there is no guarantee that it will be long lasting. We have another member here who tried the same drug and was able to get good results except for the rectum, and now is diagnosed with Crohn's. I'm not saying that is your fate.

If it were me, I'd go for the colectomy and j-pouch. And one more thing, even though you no longer have active pancolitis, that is still your primary disease and your future cancer risks are the same as anyone with pancolitis. But, if you are going to be kicking yourself for not trying this drug, you'll probably be focusing on every little setback as proof of your wrong decision, rather than just moving forward. You really do need to be 100% behind your choice. Bottom line, no matter what any of us would do, you are the one who has to live with it.

I was lucky to actually have over 20 years of remission without steroids after my pancolitis initial flare in 1972, with just a few relapses during that time. Eventually I had another major flare and wound up with a colectomy. That time allowed medical advances to come up with the j-pouch surgery. But, my doctors would have pushed very hard for surgery if I could not get off steroids after a few months. That is how I wound up with my j-pouch in 1995. We did not entertain experimental options.

Jan

Soory, but I would try this and Fecal transplant before I remove my colon. There is no free ride with a j pouch unless you go with a ileostomy. I wish I had these things back in the day.

Ale, you have my utmost respect for being able to complete college while battling this horrid disease.I was on prednisone for 3 1/2 years off and on and it was horrible.Biologic's were in the experimental stages in the mid 90's,so that wasn't an option for me.I ended up at the Mayo Clinic Arizona.My surgeon and G.I. said the words I needed to hear,"if the medication has not worked for you by now,it probably won't do anything for you". That was when I made the choice to regain the quality of life.
I realized afterward,even though the temporary ostomy bag was a drag,it was still way better than before.It's normal to feel like we gave up too soon,or should have tried this.
It sounds like you have picked a quality and experienced team to perform the surgery,if that's the direction you need to go. That makes a lot of difference. Listen to you inner voice,and best wishes.

I think Jan nailed it. The goal here is a mixture of good health and peace of mind. If you'll be forever second-guessing yourself unless you try the Vedolizumab, then perhaps it's worth the 9 weeks (and 3-stage fall-back surgery). You've sure been on steroids too long, though.

well putting in my two cents..i was just on steroids three months before my doctor and i decided long term issues from steroids was not a good choice...i tried as many things as you but stopped holding out for the magic bullet.

i think something like over 90 per cent of people have success with j pouch surgery..even though i have fallen into that 10 percentile myself i still would have chosen the operation because i knew i was surely headed down a rocky road with steroids..after only three months with steroids i lost so much bone and it was not going to get better..serious osteo is not minor and the host of other diseases from steroids..percentage wise i think you have higher odds of regaining your health with surgery..mind you surgery is not a walk in the park..but that just my thoughts..good luck in whatever you do..

Tough decisions. I can only say I wish I skipped the Remicade that time and had the surgery sooner. I just ended up wasting more time. So in my opinion, have the surgery and skip the drugs. Good luck with whatever you decide.

Vedolizumab might delay surgery for you but I just don't believe there is anything on the market or in any stage of development that would prevent someone with your history from eventually needing surgery. You might as well do it now when it's relatively convenient and you're young.

Sorry you've been through so much. My hat is certainly off to you with finishing college during a five year flare!! I wish you the best -- most j-pouchers (myself included) are very happy with the results.

Thank you all so much for your replies! It definitely helps to get all of these perspectives.
Have any of you jpouchers ever regretted the surgery at times or wished you had tried one last drug?
-Ale

I think we forget what feeling good and/or being healthy is like. I had slowly worsening UC for 15 years but was only on pred for 6 months. Once that diseased colon was out of me, I was amazed at how good I felt. Eventually I realized how much the UC had been controlling my life. After surgery, I had a few times when I wondered if things would ever get better, but overall, I have never regretted the j-pouch surgery and would go through it all again if I had to.

I would say the majority of us had moments of regret in those early post op weeks when we thought we might never be able to leave the house again. I didn't, because I was circling the drain waiting to bleed out before surgery. Even high dose steroids were not helping.

But, in the long run 90-95% are satisfied with their function and would do it again if they had the option. But, if you are in the 5-10% failure group, it is little consolation that your group is small.

There never are any guarantees. If you have the time to try something new, it might be worth exploring, even if it might mean an extra surgery down the road.

Jan

I've never regretted it; I had surgery 13 years ago when the last available drug was 6MP. I'm glad I didn't have to resort to Remicade or Humira. I would have tried anything to get in remission. The only thing I regret is the 2.5 years of my life that I lost due to a non-stop flare. I can't get that time back.

Sue

Boy, Suebear, our "history" is so similar! My last ditch effort at achieving remission was 6MP. Soon after starting it I came down with Pancreatitis. I was then convinced the J-pouch was for me and I was correct. I've never once regretted my choice. My big concern was colon cancer because my mom lived with untreated ulcerative colitis for years (severely afraid of doctors) and passed away from colon cancer. I feel very grateful for this surgery and the surgeons who perform it!

You posted this question on my six year anniversary of my first surgery, so I would like to reply. This is a hard decision in some ways because you are young. I guess for you I would ask some questions- What are you willing to trade off for keeping your colon? What long term side effects could show up from this new drug? When your doctor says that your pancolitis is gone, does he mean that you are in remission or does he imply that you are cured in that part of your colon? also, what do the surgeons say (as in second opinion?) The problem I found with seeking that one remission that would finally stick was that my remissions just never lasted very long. I had fought against the surgery as I too wanted another remission. For me, the surgery gave me a second chance at having a life again, although it is different than one with a normal colon or even a colon in remission. It is a tough surgery, but I wish I had done it sooner. Whatever you decide, there is no right answer and there is no wrong answer. Whatever you decide, I would find out as much as possible about any negatives with the second trial medication. The first med that had the possibility of a fatal brain disease sounds scary!

You have been on steroids too long. My husband was on steroids and he was sick from being on them more than sick of the colitis. That is when he made the decision to have a j-pouch. It's been 19 years and one of the best decisions he has made (besides marrying me..LOL). Sending a cyberhug to you...

I'd get that diseased colon out! I had three top doctors in Boston and Istanbul, Turkey all tell me that if the biologics hadn't worked for me yet, they wouldn't in the future. I tried humira and did 4 remicade infusions. There was a new drug due to come out in December 2013 (I had my surgery at the end of November 2013) and Dr. Friedman from Brigham and Women's told me in October that I couldn't wait that long.
I'd say to stop hoping for remission that seems very unlikely to come, and just get the surgery done. You'll feel so much better.
Katie

Ale, I wish you the best in whatever route you choose. J pouch surgery was recommended by my Gastro after 10 years of increasingly stronger drugs to get me or keep me in remission. By the end, Prednisone was the only drug that kept me in remission, though as I decreased the Prednisone, slowly, I would always flare below 5mg. If you're still on Prednisone, I would think that is why your tests are showing improvement in your colon.I decided to get a second opinion from Cleveland Clinic and they recommended I "move on with my life" by getting the surgery. They also said a fecal transplant trial may be helpful, and possibly new drug but warned that side effects- skin cancers- would not make that great choice. I have had almost 30 skin cancers, mostly squamous cell, in past 4 years, presumably caused by Azathioprine or Remicade. I wouldn't worry so much about 2 vs. 3 surgeries, as much as bone density issues related to Prednisone. You need to go into this with no regrets, once you make up your mind. I had 3 step (Oct., January, April) and despite some complications after 2nd one, I am very happy I had the surgery. All the best to you! Laurie

I didn't have fancy drugs back between '82-'91... it was steroids and Azulfidine. LOTS of steroids, and 8 tabs of Azulfidine every day.

Things have certainly progressed in the medical treatment of this disease.

Regardless, just be at peace with whatever decision you make, and also as you know, biologics don't seem to hold someone forever... however, it might be the bridge to the NEXT biologic, and so on and so forth, if this is what you are content with.

I have no regrets with my old J pouch. Honestly, I've done very well with mine, and had minimal issue for many, many years.

Thank you all so much for your input. I decided to go ahead with the surgery on Aug. 8th. Like some of you have said, if nothing has worked by now then it is worth it to have the surgery and have great chances of healing and doing well long-term.
Hearing so many of you talk about your great quality of life afterwards was definitely inspiring. Thanks again- I'll keep you updated on how it goes!

congrats on your decision.
keep looking forward

Good luck with your surgery! I hope it's smooth sailing but as I'm sure you know there will be tough times in the process. Each step has it's own challenges, but if you face them like you have with colitis, you'll be fine! It takes time, but you'll get there! Don't be afraid to ask for help! Keep us posted!
Laurie

I would do two things different. Not do the remicade and tried the fecal transplant. Otherwise I would still have the surgery.