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Posted 8/3/2017 12:21 AM (GMT 0)
Hello,

Long time listener, first time caller. I'll make my intro story short:
Prior to Aug 2016, I was in perfect health and had 1-2 BMs a day. in Aug 2016, I was bleeding when I had a BM so i had a colonoscopy and I was diagnosed with UC. I was put on Lialda and the bleeding stopped, i thought this isnt so bad. Then November 2016 hit and boom, bad bleeding, 8-10 BMs a day, and just terrible urgency (never to the point where I had accidents). my life has been completely flipped. i never used public bathrooms for a BM, but now, i was going at work and anywhere else. I have been on Lialda, Azathioprine, Prednisone (reduced symptoms, but they came back as soon as my Dr. took me off of them), Humira, and now I'm currently on Entyvio.

I've had both loading doses and I've seen improvement already with the Entyvio. Probably down to usually 5 BMs a day (0 times at night) and the bleeding has decreased. the urgency still exists, but i've noticed the urgency now will sometimes disappear and I wont have a BM. long story short, i feel pretty good about my time on Entyvio so far. I know Entyvio can take a while to get me back into remission, but as long as i am improving, i am okay.

I had an appointment with my doctor last week and he kind of mentioned in passing: If this Entyvio doesnt work, you will have to consider surgery. i was kinda stunned that he was pretty much saying that i'd be out of options medicine wise. i had UC for a year... how could i be out of medications already? especially when i read these forums and i see medications i've never heard of. i understand the idea that typically when you try a class of medications and one doesnt work, all in that class wont work, but i still cannot believe ive reached the end of the line already. does this sound familiar to anyone? he said there are new medicines being introduced and in phase 3 trials, but nothing available yet that he'd be confident could help me.

my other question now looks at surgery. i understand my days of 1-2 BMs a day would be over. that is something i've accepted and recognized. my question is: for anyone with the pouch, how livable do you find it? i know there'd be an uncomfortable adjustment, but once i got over that, would i return to life pretty normally? my main thing is the urgency. would i still get that urgent feeling that has been plaguing me for almost 10 months? and is the pouch people could easily recognize when you are out in public? i guess during the winter it wouldnt matter, but during the summer?

sorry for the long post. i'm hoping the entyvio continues to improve my symptoms and eventually i get back into remission and i stay in remission for decades. but at the same time, i'm starting to accept realities. these past 10 months have been the most difficult of my life, but i fully recognize by reading these forums that people have had it far worse. i'm just trying to get a sense if the grass is greener on the other side post-surgery. at this point, i dont know if i'd do the second surgery to get the internal j-pouch. i've read best case scenario is 4-5 BMs a day, but some people have problems that cause much more BMs a day.

Thanks!
Posted 8/3/2017 1:10 AM (GMT 0)
I'm brand new and don't know much more than what I've picked up on the Internet, but like you, I was surprised to hear that your doctor was mentioning surgery so soon just based on the stories I've heard here. I hope the entyvio works for you too!
Your symptoms and experience at the beginning is exactly the same as mine. I'm glad you shared and I'm sure people here will have comments and maybe suggestions.
Posted 8/3/2017 1:34 AM (GMT 0)
Hello. My story is very similar to yours -- especially the thing about bms and public restrooms. Ah the things we quickly get used to with UC!!! I'll have my 5th entyvio infusion in 2 weeks and I could see a difference after #2 also. Two days ago I would have said I was very close to remission. Not so sure today because I've been cramping pretty good today. I'm thinking its due to being so close to my next infusion.

I always assumed that if entyvio didn't work I'd try remicade. I'd hope that would be an option anyway.
Posted 8/3/2017 1:39 AM (GMT 0)
I had an ileostomy for 2 years and there are now times when I wish I still had it. It does take about a year for your bowels to fully optimised themselves to their new setup, if not longer. That doesn't mean things will be bad for a whole year, but stuff like being able to sleep through the night without needing to get up once to empty your bag will probably take several months to happen. (And in the interests of honesty some people never manage it, although I did: in fact my bag would be only half full when I woke up.)

Never had any trouble hiding my bag under clothes, even in the summer. Obviously with an internal j-pouch there will be no external sign of anything, apart from surgery scars.

That all told, I'm surprised your doctor mentioned surgery, as I was in a far worse state than you for years and nobody mentioned surgery to me - even when I was in hospital for 9 days. Looking back, it is a bit weird at how everyone acted as though surgery was a state secret, so in a way it is good your doctor is being open with you about it. But I'm not convinced you have tried "everything". For a start you only tried one mesalazine, which was Lialda. Since Lialda worked, at least for a while, I'm surprised you didn't try any more mesalazines (including the rectal version). But I don't have the full story - maybe your doctor decided your case was too severe at that point for just mesalazine.
Posted 8/3/2017 2:54 AM (GMT 0)
Yes, you're right; Entyvio takes a while to fully kick in. I believe I've heard some people say they didn't really notice discernible improvement until around four months in. So if I were you, I'd stick with it as long as you continue to see improvement.

I believe of all biologics, Remicade has the highest efficacy rate for UC. It's a TNF inhibitor like Humira, but has a higher efficacy rate. I'd talk to your doctor about giving that a shot prior to surgery if Entyvio doesn't end up getting you there. Some people take an immunosuppresant in conjunction with Remicade (e.g. azathioprine, 6-mp) to help prevent antibodies from forming to Remicade. Of course, the combo therapy carries a little bit of a higher likelihood of experiencing adverse side effects, but the absolute risk is still quite small.

Aside from Remicade, you may be able to get some biologics approved for off-label use. Some people have had success with Stelara and Xeljanz.

As mentioned by others, you may want to ask your doctor about other brands of mesalamine. I've heard some folks respond better to some brands than others. Other brands include Apriso and Asacol. Sulfasalazine is similar to mesalamine and is an oral medication. I've also heard some people respond better to sulfasalazine than mesalamine and vice versa. You could also look into rectal medications--mesalamine enemas or suppositories (Canasa). You should be able to take the oral and/or rectal mesalamines (as well as sulfasalazine) in conjunction with the Entyvio, unless you've had a bad reaction to mesalamine.

You also have a myriad of functional/alternative approaches that you can employ to help get you into remission. Diet modification (AIP paleo, SCD, GAPs), supplementation (turmeric, LDN, boswellia, slippery elm, marshmallow root and countless others), fecal matter transplants. As with anything, some find luck with such approaches, while others don't.

So you definitely still have some options left. It essentially just depends on how long you want to try to fight it. Some people get fed up with UC and choose surgery before trying out certain medications, while others choose to continue to explore for something to get them into remission.

I'm currently looking into surgery myself, though I'm not ready to commit to it just quite yet. I've met with one surgeon. If I end up going the surgery route, I am probably going to travel to find the best surgeon I can (probably will look at Cleveland Clinic). There are some different approaches to surgery. If done laparoscopically, then any scars from the surgeries would be minimized. I've seen some pictures where the scars are hardly visible at all (can look this up on Google). If you go with the j-pouch, it would be virtually impossible to recognize. If you had your shirt off, then someone might recognize the scars. If surgery is performed laparoscopically, then I'd bet hardly anyone would be able to tell what your small scars are from.

As you noted, you would experience more frequent BMs if you pursue surgery, but if everything goes well, then the urgency will be eliminated. I've heard many j-pouchers are able to hold BMs for quite some time if necessary. There are a few people who have bad outcomes from surgery, but finding a very skilled surgeon probably reduces the likelihood of such a poor outcome. A good website to consult with questions regarding j-pouches is jpouch.org.
Posted 8/3/2017 12:42 PM (GMT 0)
Try not to worry, as Entyvio might be your ticket to a remission, just give it ample time. It's preferable to keep your large intestine if you can get your UC into a good, solid remission and it's still possible you can.

" i was kinda stunned that he was pretty much saying that i'd be out of options medicine wise. i had UC for a year... how could i be out of medications already?"

Do you need surgery today? No, absolutely not. A lot of doctors mention surgery early to get you at least thinking about that possibility, as the mental hurdle is often the hardest to cross. At this point you've failed one biologic, humira, and are starting a second, entyvio. If you were to fail both (too early to say on entyvio) then surgery would become more relevant of a discussion to have with your doctor. As your chance of a good outcome for a 3rd biologic when 2 have failed begin to get slim. Can a 3rd biologic work for some when others did not? Sure we've had some luck with stelara or xeljanz for a few posters, but the odds start to diminish rapidly. Some do fight it out, others do not, and it's a very personal choice. Being only a year into UC doesn't matter, as some of us do have very aggressive cases and sprint up the medication ladder. Is it much sooner than you expect? Likely. Is it too soon? No, not from a medical basis, as severe cases can move very fast and either respond or not to available treatments. For those who are nonresponders to everything, surgery can find them fast (only about 20 percent of us ultimately need a surgery, and 80 percent of us do not need it).

"my question is: for anyone with the pouch, how livable do you find it? i know there'd be an uncomfortable adjustment, but once i got over that, would i return to life pretty normally? my main thing is the urgency. would i still get that urgent feeling that has been plaguing me for almost 10 months? and is the pouch people could easily recognize when you are out in public?"

I think you're mostly scared as you do not understand what the surgery is, outcomes, and lifestyle are like. I'd take this an opportunity to learn what you can, and I am sure it will not be what you are thinking. To start, the j-pouch surgery is almost the defacto surgery for UC patients, and the end result is having no colostomy bag or appliance attached to the outside of your body. Rather, you have an internal pouch made of the end of your small intestine that's attached to your sphincter muscles, meaning you poop as you do now: by sitting on the toilet. To the casual observer, you have nothing but a few small scars on your lower abdomen to show that you went through a surgery (scars visible with a swimsuit or other low cut outfit). Often the surgery is done in 2 or 3 steps, and you might temporarily have a colostomy bag for a few months, and there are a number of holders and clothing options that make it invisible.

Urgency is a thing of the past with UC surgery, as rectal and large intestinal inflammation are the direct cause of that urgency. With UC, only your large intestine is attacked and once it is removed the attack ceases. So with a j-pouch, you can hold it until it is convenient to poop a 1/2 hour, an hour, multiple hours or more when you want to. Something that is impossible with badly flaring UC, you cannot hold it and do accidents happen with flares.

It's true that a good outcome of j-pouch surgery is 4-6 bms a day. But they are spaced evenly out between the 24 hours in the day (not like UC flare which are all frequent and urgent bms clustered in the early AM). J-pouch bms are very quick and effortless, and usually done while peeing. How often and frequent do you pee within a given day? I bet it is darn close.

The lifestyle of J-Pouchers is without limits and free of UC symptoms, it's wonderful compared to constantly flaring in an uncontrollable manner. Most who've undergone surgery previously struggled with constant UC symtpoms for a long time, and it's liberating and wonderful to be free of wicked UC. Many say they wish they'd undergone the surgery much sooner and suffered less. Not every case is picture perfect, and rainbows and puppy dog tails, but the majority do have good outcomes.

Here's some additional reading:

Articles regarding the procedure - There are also some good blogs out there that can help you get a handle on what the process is like from those who have undergone it -
Posted 8/3/2017 2:34 PM (GMT 0)
I tried every biologic and now I am on Stelara, there are options before surgery. I tried Entyvio for 6 months per Mayo Clinic, it just made my gut angry.

I'm now on Florastor probiotic ( Four days in  and just the last two days in , taking it 2 pills twice a day, every 12 hours) and it seems to helping me.

I have bleed EVERY DAY for 12 years!!!!!! No doctor said yet, take out my colon, only if I want to be rid of UC/Crohns. I'm not at that point.

Posted 8/3/2017 10:01 PM (GMT 0)
As a j-poucher, I am happy to second iPoop's summary of j-pouch life. There is no urgency. I go (on average) 4 times every 24 hours. It's very predictable: at some point after I wake up, around lunch time, around dinner time, and before I go to bed. If it's not convenient, I can hold on for hours if necessary. I eat and drink normally. I am med-free, but take psyllium husk as a daily food supplement.

I've found it to be very livable so far. Going four times a day isn't a hassle, as I would visit the toilet that often anyway to pee. I eat and drink normally (coffee, spicy food, alcohol). For me the only downside is that emptying a j-pouch can be noisy. Apart from that, I struggle to think of any ways my life is limited by having a j-pouch. I regard myself as living a very normal life (busy job, married, small kids...) and don't think my colleagues or friends would know I had a j-pouch if I didn't tell them.

When I failed remicade my consultant offered to put me on entyvio, but said he would also be fully supportive if I chose to have surgery instead. I had reached the point where I just wanted to get on with my life, and met my surgeon soon after.
Posted 8/3/2017 10:20 PM (GMT 0)
Not knowing ALL of your story, I would say you have some options before surgery...but it also doesn't help to think of the possibility before you are actually faced with the decision.

Of course, there are odd cases....like mine.....where it is not even a full year between original diagnosis and surgery. I was diagnosed in the summer of 2012 and had my colon removed in March of 2013. I chose to get a permanent ileostomy and have never second guessed that decision.
Posted 8/3/2017 10:40 PM (GMT 0)

superhenderson13 said...
Hello,

I have been on Lialda, Azathioprine, Prednisone (reduced symptoms, but they came back as soon as my Dr. took me off of them), Humira, and now I'm currently on Entyvio.

Did you stop taking meds as soon as you started feeling better and then flared again? We need to continue with meds even when we feel fine. If you kept stopping them, that would be why you keep flaring (except pred -- always stop that as soon as safely possible).

Be patient with Entyvio. It can take a while to get to full effect, but if it works you can feel completely normal. I've been on it for a year now and am maintaining complete remission. I have my regular infusion tomorrow night.

I just posted this link on another post but sharing here in case you want to read about other experiences with Entyvio:

www.healingwell.com/community/default.aspx?f=38&m=3456509
Posted 8/4/2017 3:08 AM (GMT 0)
All,

I really appreciate your responses. before i found this forum, it had been a struggle to talk about my UC with anyone besides my doctor because it is a sensitive topic and no one really understands it unless you have it. its great to have people at all points in the UC stage around and willing to contribute, thanks.

My understanding based on my discussions with my doctor is that Remicade is no longer an option because I tried and failed Humira? I thought once you used one drug in a drug class and it didnt work, none of the others in the same class would work?

at this point, i'm completely at peace with the idea of getting surgery. i knew being 23 years old when diagnosed, i was facing an uphill battle. i look at the benefits in several ways. 1) no more insurance hassles. i am very lucky to have a great plan through my employer and i have had very little out of pocket costs. if i get the surgery, expensive medications and worrying about maintaining that good insurance goes away. 2) i can return to a normal mindset because i wont have the UC thought in the back of my mind everytime i have a bowel movement when in remission. i guess surgery is the final solution to solve all problems. 3) I get my life back. i am very bummed out that i've lost 10 months of my early 20's. turning down party invites, not spending a lot of time with friends and family, worrying about it at work... as everyone knows, that takes a toll. i'd be happy to have my life back. 4) no more urgency. of all my symptoms, the urgency is the worst. i've been lucky to never have any type of accident, but there have been a lot of close calls where if i was delayed by even a few seconds, who knows. i can handle the 4-5 BM a day. that isnt the end of the world, but the idea that this urgency would finally be gone, that is comforting.

i'm optimistic about this entyvio. i seem to be on track with a lot of people who have gotten it to work for them. anything could happen, but the prednison and lilda were the only other two medicines i tried that i saw any symptom relieve. seeing even the slightest change is wonderful.

thanks to everyone for their comments and for the recommendations. i continue to pray for all of you so that you find relieve/remission in whatever phase of UC that you are in.
Posted 8/4/2017 4:42 AM (GMT 0)
Hi superhenderson13,

After reading your posts, it is amazing to find out how similar our cases are!

I was also diagnosed mid last year, put on Apriso (Lialda was much more expensive on my prescription plan at that time) and was able to go back to my "old self' after the first bump. November-December 2016, symptoms came back, more bleeding, urgency and diarrhea. Prednisone helped until March 2017. I have been (and still am) in my worst flare since then. I was once on Prednisone 60mg and it still didn't help me much.

My GI doctor wanted me to be on Entyvio initially but of course, insurance didn't approve it based on the fact that i haven't tried any other biologics at that time. So I tried Humira for 6 weeks, unfortunately, it didn't help at all. I was pre-approved for Remicade at that time, so I got switched to Remicade right away. Accdg to my GI doctor, although both in the same class (anti-TNFs), Remicade is much more potent and direct than Humira. After 3 doses of Remicade (maxed out my dosage plus given few days earlier than scheduled due to my worsening symptoms), my condition remained the same. Or maybe I should say, it actually made me worse because of all the wait-times for these biologics to work. After losing about 25 lbs and one hospital admission, my insurance finally got me on Entyvio. I am due for my 3rd infusion on August 21.

Surgery was definitely on the table for me. I have already met with one colorectal surgeon that my GI doctor has referred me to. He explained to us the procedure, post op scenarios pertaining to the procedure. I am more at peace knowing my game-plan in case I go to surgery route one of these days. I am definitely not looking forward to it at this point but I have to admit, it is appealing thought for sure specially when I am having bad days/nights.

My quality of life has changed so much with this major flare I am into right now. Turning away from friends/ party invites, being home-bound, or if I need to go out, I am constantly looking out for restrooms and I don't feel safe without my "emergency" bag in case of accidents... my world sadly revolves around my UC for the past 6 months.

I am feeling optimistic with Entyvio as well. I am willing to wait a little bit longer still and hopefully, it continues to work. I have about 10-20% improvement, not a lot definitely but it means so much to me. Hope and pray we find our answer for much needed remission with Entyvio.
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