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The next step for this flare?

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Ulcerative Colitis
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Posted 7/9/2018 4:52 PM (GMT 0)
I remain on the Entyvio and I started another medication a 5 weeks ago (cannot remember the name, it begins with an M and is orally taken weekly, ill edit name in when i am home). The doctor said the Entyvio is clearly working and he was happy with my scope that happened 5 weeks ago. He said the inflammation is down to the final foot of my digestive system which is the whole rectum and the first few inches of the colon. Clearly the Entyvio is working, but we need to find that second medication to get me 100% there.

He mentioned rectal meds and I fully understand that they are a necessary evil, but I resisted at first and asked for this oral medication. The doctor said to wait for about a month and then look at the results. At a little bit after the month mark, the only clear thing I can see that has improved is the bleeding. I rarely bleed now which is a start. My stomach still gets upset, the stool is regaining a tool paste like form off and on, and the urgency is still there (although it is pretty minor relative to when the flare first started). Is the bleeding subsiding a good start? I'm calling my doctor this week to checkin so we will see, but I was just wondering if recovery from a flare is done in parts or if I should have seen everything improve at this point, not just the bleeding? I am sure if he wants to move to another drug, rectals will be the focus again. I thought about asking to go back on Lilada. I had great luck with Lialda when I was first diagnosed and it was the only drug I fully responded to so I was hoping maybe that drug can be that final 30% bump I need to get back to remission.
Posted 7/9/2018 4:59 PM (GMT 0)
I think you're on methotrexate. I wonder why that and not imuran or 6mp? It sounds like you've made good progress and you have some options to get rid fo that last bit of urgency. I think Lialda is a good idea, many people take a combo that includes mesalamine orally along with a biologic, and even 6mp or imuran (but it sounds like you're going with mtx instead of one of those). I never really understood why mtx over the other meds, when 6mp or imuran alone are capable of achieving and maintaining remission and mtx has little to no evidence of improvement for UCers. At the same time, I guess it is good for keeping antibodies from forming...

I know it's not convenient to take a lot of meds, but if you were on entyvio mtx, lialda, and a rectal, it wouldn't be the end of the world. Maybe just adding a rectal for the moment would be a good step smile You could see about getting some options for that too, since you have a foot, enemas are definitely the best option, but you may want to switch between mesalamine and steroid enemas to see if you can get it managed, then move to the mesalamine for longer term maintenance. I don't think any UCer every regret having extra tools in the arsenal. Sometimes it's good to get both and see what works for you.
Posted 7/9/2018 5:21 PM (GMT 0)
Hi notsosicklygirl,

You're right, it is Methotrexate. My signature is missing for some reason, but I was on Azathroprine and 6mp. Both made me very ill with vomiting so my doctor took me off of those when I tried them, which sucked to loss both of them like that.

This flare started in November 2016 and it certainly hasn't been 100% miserable like a lot of other people's flares on this forum, especially since starting Entyvio last July, but it just really knocks you down. even though i can live a much better lifestyle than most people flaring, it still sucks to worry about long drives, going out, and living a normal life so if it takes a rectal med to get me to remission, I'd be willing. I'm sure it is like a lot of other no-so-fun things to do, once you start with it, you get into a routine and soon it isn't even a big deal.

the first step was finding the first drug to work, Entyvio seems to be a long term option for me. I just need to find that combo that will work. thanks for your advice.
Posted 7/9/2018 5:51 PM (GMT 0)
Rectal meds.....Lialda won't deal with the inflammation in the rectum.

Flares start and end in the rectum.....use them. I don't call them an evil, I call them amazing.
Remember these symptoms you're having....for they will be symptoms of a flare if you've been in remission for a while.

Your choice.....regarding meds. But the rectals are what you can do, use and moderate for yourself. You will learn and understand your symptoms better....as well how to treat yourself.

q
Posted 7/9/2018 6:56 PM (GMT 0)

UCer23 said...
Hi notsosicklygirl,

You're right, it is Methotrexate. My signature is missing for some reason, but I was on Azathroprine and 6mp. Both made me very ill with vomiting so my doctor took me off of those when I tried them, which sucked to loss both of them like that.

This flare started in November 2016 and it certainly hasn't been 100% miserable like a lot of other people's flares on this forum, especially since starting Entyvio last July, but it just really knocks you down. even though i can live a much better lifestyle than most people flaring, it still sucks to worry about long drives, going out, and living a normal life so if it takes a rectal med to get me to remission, I'd be willing. I'm sure it is like a lot of other no-so-fun things to do, once you start with it, you get into a routine and soon it isn't even a big deal.

the first step was finding the first drug to work, Entyvio seems to be a long term option for me. I just need to find that combo that will work. thanks for your advice.

That makes sense then about the mtx. It's a good option in your case. It is frustrating to not have imuran/6mp as an option, but quincy is right, probably your best friend at the moment is some sort of rectal enema. You will have to try and see what works. People don't necessarily do them daily, some people do them every other day, or a few days a week. Try to be open-minded and hopefully you're 100% very soon. smilewinkgrin
Posted 7/10/2018 4:34 PM (GMT 0)
Thanks to both of you. I decided I am going to give this rectal meds a try. I've been hurting too long to not give them a shot. If they are that missing puzzle piece, it will be completely worth it.

I guess my other question is the symptoms I'm having versus where my inflammation is. Considering my entire colon is clear besides the last 5-6 inches and the entire colon, I don't understand why I am still having an upset stomach and an occasional burning sensation in my stomach/abdominal area. It usually just feels like a burning sensation that sometimes leads to an upset stomach or just discomfort that occasionally goes away.

I figured that with where the inflammation is, I'd still be feeling occasional urgency, rectal pain when going to the bathroom, and constipation. All of those symptoms make sense given where the inflammation is, but I'm confused why I'm having some of the more traditional UC symptoms.
Posted 7/10/2018 5:04 PM (GMT 0)
Depending on the location, limitation, severity of inflammation....signals will be changed. U.proctitis will present with the very symptoms you are having....remember them!

Ask for the 4g mesalamine enemas.....nothing less. Start there. Other options as additions and instead of are available.

As well, ask for dicyclomine to help with the stomach discomfort and spasming.

Keep us updated.
q
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