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I don’t want to stop taking my meds! Help!

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Ulcerative Colitis
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Taylorjo
New Member
Joined : Apr 2021
Posts : 16
Posted 4/7/2021 12:14 PM (GMT -6)
Ok, so first of all I just want to say thank you to all you UC angels that have contributed so much knowledge and all the experiences good and bad. I have been in the shadows for the last month playing connect the dots and I have found so much useful info-thank you!! I feel fortunate to have not had to deal with a lot pain and not had any of the hospital stays and surgery’s etc. Here is my back story: the last 8 years (I am 38) I have struggled with diarrhea, mouth ulcers, upset stomach, joint pain, cystic acne and an anal fissure. In those 8 years, I had two babies a wedding and house reno 🙃 I had sought out help with a g.I. for the diarrhea previous to the fissure. She told me to add fiber to my diet. Which fortunately I didn’t. We did a lactose test and I was neg. I did not make it back in for the other two breath tests. Well a couple of years later and bam- anal fissure from all the diarrhea.I saw a proctologist then who prescribed and ointment but then- I started to load up on Advil for the pain-yikes! I started having hives, red eyeballs (like pink eye), swollen gums and the most terrible joint pain I’ve ever experienced-I could hardly move out of bed. Back to the dr., full blood panel. Nothing. More years pass and now I’m seeing blood and mucus- finally I see a g.i. who wants to do a colonoscopy- bingo, UC diagnosis. She put me on mesalamine suppositories 1000 mg. for 30 day. I cleaned up my diet for the flare (which was already pretty clean) no gluten, dairy (beside yogurt), watching the veggies and fiber intake. but the last few days I had a little diarrhea and bloating and I only have a few meds left 😬 I feel like it’s too soon. Maybe I’m just worried because they worked so well. This is the first time I haven’t eaten immodium daily in so long. How long would you all continue to stay away from gluten, a.I.d veggies and all your trigger foods? Forever? Ugh. I hate playing this guessing game. I’m not supposed to meet with my g.I. until June! How do they measure to see if your flare is gone- is that through the fecal test? Oh man I’m just rambling..thanks for any insight.
-Taylor
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quincy
Elite Member
Joined : May 2003
Posts : 33231
Posted 4/7/2021 1:15 PM (GMT -6)
Welcome to the forum.

What is the location extent of your UC? Diarrhea doesn't fit with only suppository coverage. You need to be on oral and enema mesalamine.

Get a copy of your biopsies results.

Why will you be off meds? Get a call into the GI asap.

You are still flaring...no food triggers UC as per how I understand UC and my experience. Some others will disagree. However, food intake can affect stool consistency and comfort, so changing that is separate. Don't confuse the two.
Try to focus on the UC aspect and not psychologically on the food or that you're doing something wrong there.

I suggest you also get on good probiotics.

q
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Taylorjo
New Member
Joined : Apr 2021
Posts : 16
Posted 4/7/2021 1:27 PM (GMT -6)
Hi Quincy, thanks for the reply. I was given a sheet with the colonoscopy results after the procedure and that was it. I never heard for the dr again until the biopsy results confirmed UC- a voicemail from the nurse. The dr stated in the paperwork to take the suppositories for 30 days. No other form of treatment was discussed. The UC was only seen in the rectum.

I had thought about probiotics but have had mixed results in the past. I was reading about E. coli nissle-I think that’s right.

Anyway, yes it’s hard for me to separate the food/UC connection.
I had some upset with the small amount of bloating and one day of diarrhea- maybe 2 bms that day. I have had some joint pain still.

I will call the office today.
Thanks again.
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Taylorjo
New Member
Joined : Apr 2021
Posts : 16
Posted 4/7/2021 1:31 PM (GMT -6)
To be clear it says: diffuse moderate inflammation was found in the rectum from 0-10cm proximal to the anus secondary to proctitus ulcerative colitis.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1499
Posted 4/7/2021 1:36 PM (GMT -6)
Most UC-ers have to take medication for life. I know one person with a very mild case who doesn't need it since his first flare up, and a few people on this board can manage their symptoms with diet. But I would go into this with a view of potentially staying on meds very long term. (And maybe see a different GI if this one is not helpful)
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1361
Posted 4/7/2021 1:55 PM (GMT -6)
Haven’t heard of only a 30 day course of suppositories for UC. 😳

Call your dr and ask for appt ASAP. And also start shopping around for a 2nd opinion or better GI, one that is well versed in treating UC or IBD diseases.

Also ask for a copy of your pathology reports along with any images from your colonoscopy as you’ll need them down the road if you do see another GI.
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Taylorjo
New Member
Joined : Apr 2021
Posts : 16
Posted 4/7/2021 2:14 PM (GMT -6)
Thanks everyone, Yeah she seems like a good doc but I wasn’t sure why she wasn’t wanting to follow up sooner. I left a message at her office just now and hope to hear back about what her intentions were/are. I have images of the colonoscopy and I am requesting my biopsy results as well. I really appreciate your time and feedback.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2519
Posted 4/7/2021 4:58 PM (GMT -6)
Good that you have called for a follow up. Also ask for a medication refill until you can be seen. Even if all you have is UP, you may need regular medication.
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quincy
Elite Member
Joined : May 2003
Posts : 33231
Posted 4/7/2021 11:25 PM (GMT -6)
Let us know the outcome of your discussion with the GI. I'm happy you called.

q
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geezernow
Regular Member
Joined : Nov 2017
Posts : 256
Posted 4/8/2021 4:20 AM (GMT -6)
YUP, look around for a really GOOD G.I. doctor. You may also wish to ask your doctor about some mild anti-anxiety meds. My doc prescribed some for me a while back and it got me back into full remission! It was amazing at just how quickly remission happened. He told me I have IBD as well as UC. Now I rarely use the anti-anxiety meds. Just something to think about. I'm very fortunate to have a doctor who really listens to his patients, and cares. They are hard to find! Best of luck and as others have stated....UC meds are probably for life, not just for 30 days.
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