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Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Anyone else feel like they’re never quite in remission?

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Ulcerative Colitis
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 11/14/2019 2:19 AM (GMT -7)
Hi everyone,

I’m feeling pretty frustrated at the moment. It’s exactly one year since I had my scope and was diagnosed with this awful illness. The last year has been pretty tough: i was on pred for 7 months, with over half that time spent on doses above 30mg and suffered awful side effects. I tried azathioprine when it became clear I couldn’t get off steroids without flaring but this made me ill and caused liver issues so couldn’t take it. I was then approved for humira but took over 2 months to get started on it. In the meantime I started 6mp.

To cut a long story short, I am now on only 25mg 6mp every other day and also have to take 100mg allopurinol with it, I inject humira the standard every 2 weeks and also take mesalazine. My consultant acts like you should have no symptoms in remission and it should be like having no disease at all but I just don’t feel like that. I still have some symptoms most days mainly pain usually in morning only and still feel some urgency.

I just feel depressed because I just feel like I’m walking a tightrope with this illness and don’t feel like I’m fully better. I feel very lost. Has anyone else felt like this? I’m worried nothing is going to work for me.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 2:39 AM (GMT -7)
Yes, I can completely relate. The first many years I had UC, I still had minor symptoms daily (4-5 BMs, nausea almost every day mid-morning for 20-30 min. for a year, urgency, some mostly mild pain). At that time, I decided to deal with those symptoms versus go on an immunosupressant because they weren't disrupting my life that much. However, since those years, I have had several decent periods where I had no symptoms to speak of so do not lose hope yet.

How long have you been on the Humira? Has your doctor mentioned increasing it to every week?Have you tried adding mesalamine enemas to your mix?
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 11/14/2019 2:45 AM (GMT -7)
Thanks for your reply. I’ve been on humira since April and 6mp since March. Well, I had a test to check levels of humira in June but I’m pretty sure they did at the wrong time... I’m sure you’re meant to have it done just BEFORE your next injection to see if it’s staying in your system but I had mine checked a few days after I injected...? Anyway it came back ok so I’ve stayed on every 2 weeks... I’m actually having it checked again next week and am making sure this time it’s the day before my next injection.

Unfortunately mesalamine enemas don’t agree with me, I tried but they give me severe cramps. I was able to use foam steroid ones for 3 months with no issue maybe because the volume of liquid was less but my doctor doesn’t want me on these long term because of the fact they contain steroids.

I just feel so frustrated by this sad
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 2:54 AM (GMT -7)
Yeah, they checked it at the wrong time. Glad you're getting your levels rechecked. It is a very frustrating disease and you're still pretty newly diagnosed. You still have several med options. I know it sucks waiting around for these meds to see if they will even work. I'm waiting for my Humira to be pre-approved right now. Im starting imuran too and am scared because I've read a lot of people have bad reactions to it.

I hope you can get into a really solid remission soon!
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 11/14/2019 3:01 AM (GMT -7)
Thanks! Yeah I thought so- my consultant said it doesn’t matter when you check the level but pretty sure that’s wrong! Do you by any chance know what the level should be?

Thanks! I hope you feel better soon too. Don’t be worried about imuran - even though it didn’t agree with me, I was ok and as soon as I stopped taking it the symptoms went away. Often, if you don’t get on with it, 6mp will be better
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 3:24 AM (GMT -7)
Actually, I could be wrong. I just know for Remicade you have to get the levels checked right before your next infusion so I thought it would be the same but maybe it's not. Hopefully someone else will chime in.

Thank you!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 3:40 AM (GMT -7)
I found this: Target trough levels of at least 7.5 mcg/mL.

"Pending better data, the AGA recommended checking infliximab or adalimumab trough levels as close to the next dose as possible – that is, within 24 hours."

https://www.mdedge.com/gihepnews/article/144215/gastroenterology/aga-guideline-therapeutic-drug-monitoring-ibd
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AndyRoark
Regular Member
Joined : Aug 2019
Posts : 37
Posted 11/14/2019 5:19 AM (GMT -7)
I had phases exactly like what you describe. This disease is a tough thing.

It's just my opinion but I largely grew it from by GI's feedback. You have little to no control over this disease. It's very human to believe and struggle to control what is happening, but that is the doctor and medication's job. If it isn't working, communicate back to them. Quickly and fully. Give them the chance to do their job instead of throwing yourself through hell trying to control the uncontrollable.

I got to the point with my disease where I didn't get depressed when symptoms flared - I got angry. It wasn't me and my responsibility to keep the thing handled. The disease is an invader and you should fight, not blame yourself.

Lots of people believe that this disease can somehow be controlled through diet or exercise or stacking polished rocks on the side of a river somewhere and chanting the lyrics to the Adam's Family Theme Song while invoking prayers to Kali. If it works for you, bonus and I don't judge. I tried all of that and it didn't do a thing other than make me miserable. Communication with my doc bought me several good years of remission on and off over the years, punctuated by bad years of flares when the disease killed the meds. But not blaming myself meant all of those years were good, in some way.

Good luck.
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2584
Posted 11/14/2019 5:27 AM (GMT -7)
Can you ask your doctor to "up" the 6MP to 50 Miligrams?
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 11/14/2019 5:31 AM (GMT -7)
Thanks everyone. Well I was on 50mg initially but they said my blood tests showed I wasn't metabolising it properly whatever that means so they halved it to 25mg and added in allopurinol but then tests showed my levels were still too high so they went to every other day...
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16186
Posted 11/14/2019 6:25 AM (GMT -7)
Your dosing is correct for you with the potent combo of Allopurinol plus 25mgs 6MP.
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 11/14/2019 8:22 AM (GMT -7)
The literature notes some people get a great response to 1st line drugs and have long remissions. Others get an incomplete response and climb the drug ladder. Some eventually get well managed - and a few do not. CUrrently somewhere north of 15% will need surgery over their lifetime. That percentage is fortunately changing and getting lower as a larger arsenal of treatments comes out the pipeline.

Some people with good management of inflammation (what many GI consider UC remission) still have GI symptoms, or even stronger secondary IBS. Somewhere over 12% of people with no remaining inflammation.

I think younger folks can almost count on each decade of their life bring more options and hope because things are actively being studied. Older folks might work to accept the tightrope - much as diabetics accept a lifetime of insulin and blood sugar management (baring some large new therapy discovery).

Chronic illness can be depressing - especially for those who struggle with management. I had years of semi-management. I resisted immune suppressants, so maybe partly my fault. But after 5-6 years I got more and more managed. For the last few years I have tapered to a fairly low usage of Lialda, and can't remember the last time I saw blood. Some days I get a few trips to the toilet, but urgency is also fading into the past.

I guess I want to say, things can get better.
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 11/14/2019 9:20 AM (GMT -7)
Thank you John - reassuring to know dose of 6mp is OK. Think last time they checked levels were in therapeutic range...

DBwithUC thanks. I try to remain positive but I guess it's hard especially when you hear of people having mild cases and being successfully treated on entry level meds... Obviously I'm happy for them but think why can't that be me if you know what I mean?

Yes, I had wondered if I could have ibs.. The trouble is how do you tell the difference? I had years of symptoms before I got diagnosed and was told it was 'just' ibs when it most likely wasn't.

For at least 4/5 months now I've been going usually once a day and it's formed. The only blood I've had is from an anal fissure which is.. Quite literally a pain in the butt! But apart from that I've been OK. Just recently I'm getting some cramping again and feeling like I need to go and I'm just very wary as this is how it usually starts for me.

Thanks for giving me hope, you're certainly right that more and more meds seem to be being developed.
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Rosiedays
Regular Member
Joined : Jul 2017
Posts : 313
Posted 11/17/2019 8:04 AM (GMT -7)
I’m starting to feel like I might never be in remission. In a way though, with me, I think my pessimism is harder to deal with than the disease itself. I like threads like this that make me feel less alone and more hopeful.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16186
Posted 11/18/2019 11:26 AM (GMT -7)
It took me 2-years to achieve my first remission. Until then, I categorized remissions along with unicorns and leprechauns for me. There's just no instant-gratification, but rather a long-slog to get to a remission. Not everyone gets a fast pass.
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Bull101
Veteran Member
Joined : Feb 2015
Posts : 653
Posted 11/19/2019 5:56 AM (GMT -7)
I was on meds for almost 2 years without anything working before I had surgery. Some downsides but all in all I feel great. That's a worst case scenario, just wanted to let you know even if it comes to that, things can still be great so don't worry.
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