Crohn's Disease Forum » General IBD Discussion » Confused and slightly terrified!

04-02-2019, 07:53 PM   #1
Join Date: Apr 2019
Location: United Kingdom
Confused and slightly terrified!


I was diagnosed with UC and mild proctitis December 2014. At the time I was relieved with the diagnosis as my symptoms (and Google) had me convinced I have the dreaded C word!

The doctors put me on oral pentasa and to be honest they gave me the impression my condition wasn't all that serious...
Oral pentasa never seemed to make much difference. Some months I would have no symptoms at all, other months lots of blood and mucus despite taking pentasa daily.

I still feel like my condition is mild compared to others I've read about. I don't suffer any pain, thankfully. Mainly my only symptoms are mucus and blood.

Fast forward to 2019 and my condition remains pretty much the same. Occasionally I have pentasa suppositories that clear up any bleeding in a couple of days. But for the most part I forget I even have UC. And feel very lucky that it's not ruining my life.

I'm writing this as I've just discovered this forum and now I'm terrified that I'm going to get worse and worse as time goes on...?!
Is there anyone who has remained in a mild state with this condition or does it always get worse for everyone? I'm frightened about what the future holds for me with this horrid disease
04-02-2019, 08:21 PM   #2
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awoenker12's Avatar
Join Date: Jun 2018
Location: Chicago, Illinois

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I was on pentasa for almost 6 years. Pentasa worked perfect for me, no symptoms at all. Throughout that time, I always thought that my Crohn's was fairly mild. After a while, I decided to try to stop taking it since I felt so good which was a big mistake. I ended up back in about a year long flare in which I tried several medications to help it get back under control. Thankfully, I tried Remicade, and it made me feel great again, no symptoms.

It seems like pentasa is helping you feel better, but it may not be fully working. You should talk with your doctor. Your doctor may want to increase your dosage to help give you a boost. If that does not work, then it would probably be time to move on to immunomodulators or biologics.
04-03-2019, 07:23 AM   #3
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Jo-mom's Avatar
Join Date: Jan 2019
Location: Toronto, Ontario

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Not everyone has severe IBD. Try not to worry about the possibility of that. We can worry our heads off about everything. Often people on these forums are in need of help and so you will see more people with severe symptoms. Usually when people are doing really well, they aren't on these support groups. I agree with Awoenker12. You should perhaps discuss with your GI about upping your dosage as you shouldn't really be seeing blood/mucous. PS; My sister-in-law has had UC for over 20 years and hardly had symptoms for almost 20 years, but has recently flared but has always had it mild. Imagine if she worried for 20 years that she would get worse. You may never get worse, and if you do, there are a lot of new medications being made, and many out there that you still haven't tried. Good luck!
Mom of L (20)

Diagnosed at 19 with moderate to severe crohn's (July 2018) - likely had it since early teens asympomatically -

Enteropathic arthritis - diagnosed June 2018 - showed symptoms mid teens.

Entocort August 2018 to January 2018
Remicade - Sept 2018 to May 2019 -5 mg/kg every 4 weeks

May 2019 to present 10 mg/kg every 4 weeks
04-03-2019, 05:25 PM   #4
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nitty's Avatar
Join Date: Dec 2011
Location: United Kingdom

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Hi! Try not to worry too much and make the most of being at the mild end of things. Even if your symptoms do progress, they can usually be reversed - as long as you take any changes seriously and don't wait too long before getting further help if you need it.

I started off mild but got fairly bad until we first got on top of things. Then after stopping one of my meds I gradually relapsed into another flair, but got through that with other treatments. I'm currently in remission on mild treatment - i.e. no gut problems at the moment.

I would recommend trying the drug I am on - Salofalk granules. They are another form of the mesalazine that you are already on, but they are specifically designed to release the drug towards the far end of the bowel. Like you, my main area of disease is from the rectum and distal end of the colon.

Remember that many people are here when they need advice for current problems and this can lead to a distorted view of things being really bad all the time. I haven't been on this forum much recently as I have generally been well, and the same goes for many other IBD-ers who are happily getting on with their lives most of the time.

Best wishes. N.
04-06-2019, 09:27 AM   #5
levi's Avatar
Join Date: Jun 2012
Location: North Carolina

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I know this is incredibly easier said than done-becuase I was just like you-but you cannot worry about the what ifs. It sounds like you are doing fairly well for now. I can attest to the fact (100%) that even teh slighest bit of worry and stress will add to my possibility of having symptoms, so please try not to borrow troubles

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