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Still early, but what's next?

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Ulcerative Colitis
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Posted 7/26/2014 12:04 AM (GMT 0)
Let me preface this by saying I understand it is still early in my process, but I'm very confused as to what's next. I am currently in my first flare since being diagnosed with UC back in June. I started at 20mg of pred, and the first 2 days I noticed a difference, but then it got worse. A week into the 20mg course I went up to 40mg. Today is day 10 of 40mg, and I'm supposed to start tapering early next week. While I was on 20mg I was still having blood in my stools, but for just over a week after being on 40mg I haven't had any blood. I still am going 10+ times a day. I'm waking up having to go 3-4 times during the night as well, with lots of urgency.

Just within the past couple days, I've noticed the food I had for lunch would look relatively the same when it came back out at night, 11-12 hours later. So my colon is still very active and I'm not digesting anything fully, therefore I'm very confused. I used to weigh 160lbs, (6 ft 1, 23 yrs old), but recently I'm down to 140lbs.

Today my GI, who I am switching from very soon, recommended I try Bentyl to help slow down my colon motility, but I'm very skeptical if that will help.

Some other background info- I'm currently on Apriso in the mornings, and I've also introduced a probiotic, multi-vitamin, fish oil, L-Glutamine, and a fiber supplement.

Even though the pred is causing me to not bleed, my urgency and frequency is still there. Does this mean it's not working? I can't get a follow up appointment with a GI until August 14th, and I am kind of clueless on what a next step would be if pred doesn't knock it out. Is it possible Apriso is not the answer?

Thank you for reading this, and I appreciate any feedback.
Posted 7/26/2014 12:28 AM (GMT 0)
Sounds to me like you need to add rectal meds. Obviously the pred is working but might not be working good enough. It is not a cure even if it does work and you should not take it for long periods. Give the Bentyl a chance. It is a somewhat harmless med. It didn't work much for me but it does help many.
Posted 7/26/2014 2:12 AM (GMT 0)
Healing takes some time. Not seeing blood is positive but it takes a whole to heal to the point where all your symptoms go away. The last symptom that seems to go away for me is urgency. It's frustrating because it's also my least favorite symptom. I think rectal meds are a good idea. Bentyl may help but it seems like it doesn't do anything for a lot of us... All the supplements and OTC stuff I am not sure about. people swear by it but I didn't ntoice any improvement when was spending tons on OTC stuff. I guess you will just have to wait and see. It's very difficult to tell what's working when you introduce a bunch at once. It may not be a bad idea to just focus on the pred and apriso and introduce other items one at a time slowly.

What dose of apriso are you taking?
Posted 7/26/2014 2:45 AM (GMT 0)
Thanks for the replies. The problem is I haven't been able to get back in to talk to the doctor about my other options. I've only been able to talk to the nurse and that hasn't come up, presumably because she's not the best source for that.

I am on 1.5g of Apriso (4 X .375) every morning. I had a few symptoms right after my colonoscopy (June 26th), started Apriso the same day. Within the next 2 days, I felt back to normal, of course while still continuing to take the Apriso. Then July 4th it hit me like a freight train, and have been on the pred course since.

Maybe I sped up the OTC stuff too quickly, but all of the stuff I researched only seemed to have good benefits and no known drawbacks.

From your experiences, what kind of rectal meds would I start with? Would these be to kick all of my symptoms or would I probably be on them to maintain remission?
Posted 7/26/2014 1:14 PM (GMT 0)
Did you go crazy with a July 4th meal?
Posted 7/26/2014 1:18 PM (GMT 0)
Hi newtothis, could you be eating things that are preventing your colon from healing properly during the much-needed relief from steroids? The reason I ask is that switching to a low fibre diet and cutting out nuts and seeds (no roughage while you heal up) temporarily may just give you the boost you need. It you have sores on the outside of your skin, you wouldn't scrape rough material over them, same for your "inside skin" too. Hope you get better real quick.
Posted 7/26/2014 2:05 PM (GMT 0)
Gary- the only thing I can attribute it to was I was still taking NSAIDs for headaches, which I had always done even before experiencing symptoms.

Kevin- I've been on a low residue diet ever since this flare started. I'd like to think the pred is working due to the lack of blood, but my colon is still super active.
Posted 7/28/2014 6:57 AM (GMT 0)
Bleeding is the worst sign of all, so the fact that it stopped is a "start". The rest usually takes time to go away. If the food is coming out as it goes in, then you have a pretty fast transit time, and you need to slow it down some how....whether it be with fiber pills, or Bentyl (which I agree, doesn't seem to help a lot of us), or Imodium over the counter, which actually does seem to help a lot of us.

Urgency comes primarily from the last portion of your large intestine, the sigmoid/rectum. so I'd agree with the others about looking into adding a rectal medicine to the regimen...that's what usually makes a huge difference. Oral meds are notoriously difficult to get to work all the way down there. That's definitely your next step to get over the hump.

But, as I said before...the fact the bleeding has stopped is a good sign..that's the most damaging symptom to have.
Posted 7/28/2014 7:03 AM (GMT 0)
curious as to why you say bleeding is the most damaging ? why so more than inflammation or going 20 times a day ?
Posted 7/28/2014 12:53 PM (GMT 0)
Within the last few days I've tried both Immodium and Bentyl. Immodium didn't seem to make a difference and the Bentyl just caused me bloating and 'false positives' of having to go when I didn't.

Calling my dr about rectal meds today. I can't believe he hasn't mentioned them to this point, given how many people have said they work.

Is it best to try enemas right away or give suppositories a try?
Posted 7/28/2014 12:56 PM (GMT 0)
Also, is it possible I should try switching to Sulfa instead of the Apriso? Or stick with Apriso for now and go with rectal?
Posted 7/28/2014 2:00 PM (GMT 0)
You could try switching to sulfa or another mesalamine medication but I don't know if that's what you should do at this point. Maybe something to discuss with you doctor. I think you should get both suppositories and enemas. I personally can't retain an enema when I am flaring badly so I will try to use them but often end up using a supository. The enemas cover a larger area which is great if you can retain them... There is also cortifoam which is a foam steroid enema. It's easy to retain and seems to work well for some people. You have lots of options.. I have tried apriso but I know the dose is lower than lialda and Asacol. The max daily dose of those meds is 4800mg. You may do better with a higher dose?
Posted 7/28/2014 2:10 PM (GMT 0)
You may be allergic to the APRISO.  I suffered through 4 months of bloody watery d and non digested food when I started on APRISO and similar meds.  This stopped when I quit APRISO and started on Predinisone and 6mp.
Posted 7/28/2014 3:25 PM (GMT 0)
What's confusing about the Apriso is it seemed to work for the first week after my original scope, then bam, the flare hit me. Right now I'm not having any blood, stools are still pretty loose and urgency and frequency are still there big time. Hopefully I can get started on some rectal meds soon, since those seem to work for a lot of people.

Side note, it's amazing how all of the GI offices in my city are in business to do scopes, not to see patients. I currently don't have a follow up appointment, from my original colonoscopy of June 26th, until August 14th! Isn't that ridiculous? We tried calling around to a couple other offices and some of the earliest appointments were in September. Amazing. Anyone else have this issue in their area? I live in a relatively big metro area.

Posted 7/28/2014 4:27 PM (GMT 0)
Sounds familiar. My doc who first diagnosed the UC prescribed APRISO and then did not schedule a follow up visit for 6 weeks. I knew nothing about UC at the time. He was a suburban doc who specialized in scopes - not UC. I eventually got a doc in the city who specialized in UC. She also had me try APRISO, which lasted about 1 week of D and urgency.

I am now waiting to see a rhuematologist - took six months to get an appointment. I live near a relatively big metro area in the midwest/east.
Posted 7/28/2014 5:51 PM (GMT 0)
When I was first diagnosed I tried all the OTC stuff and it was pointed out to me that that could be some of the cause of my ongoing symptoms. I took fish oil, L-glutamine, aloe vera juice, probiotics etc... After much trial and error I find that my gut is the happiest when I'm not taking any of the OTC stuff. I tried just taking one at a time and for about a year and a half tried all different combinations. And like I said nothing helped.

I think a mesalamine enema would be good. Hope you feel better soon!
Posted 7/28/2014 10:27 PM (GMT 0)
I just picked up 2 weeks worth of mesalamine enemas from the pharmacy. Trying the first one tonight, and hoping and praying I have some success like others on this forum. I will report back how they go for me, likely in a new thread. Thanks again to everyone on here for reading!
Posted 7/28/2014 11:08 PM (GMT 0)
Give the enemas a chance, a month's worth goes a long way. Not sure why you just got two week's worth.

We're all here to support you. In the beginning, it's a real roller coaster ride. But you'll get the hang of how to manage symptoms and remission. Then you'll be advising newbies get things under control.
Posted 7/28/2014 11:19 PM (GMT 0)
GI said lets see how I do for 2 weeks, plus this gives me time to order more by mail for way cheaper.
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