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08-09-2017, 05:06 PM   #1
Sophabulous
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Mucus

Hi all

It seems that over 18 months on from diagnosis I am actually starting to get the more mainstream hallmarks of IBD. I'm experiencing more and more new and unwelcome symptoms, although thankfully they aren't too overwhelming.

The last few days I've been noticing mucus. This is something I've never had before in around 6 years of being 'symptomatic.'

My question is that I thought it was more common to experience this in UC rather than Crohn's? As my activity thus far has all been small bowel is it logical for me to assume there may now be large bowel involvement too? I've pretty much had the go ahead to start a biologic and I'm at the hospital the last week of this month so I'll certainly mention it, but I'm just curious about why this has started now?

Thanks in advance
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

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08-09-2017, 07:34 PM   #2
JLL from SC
 
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Thanks so much for the post, Sopha. Crohn's and its inflammation has for me been restricted to the area of the small bowel. Without taking you through the long history of my relationship with Crohn's, I can report that my having recently dealt with mostly the less intrusive of it's symptoms and yet finding them to the satisfaction of my GI sufficient to warrent the administration of the Biologic, Humira, I have reached a stage of at least partial or perhaps nearly complete remission. However, the nearly daily issuance of mucus and the accompanying flatulance continues to hang on. In spite of varying my daily diet to nearly nothing but brread and water, the cause of its persistance illudes me. I suppose that many of our fellow sufferers of the disease would find us fortunate to have achieved this level of capability of cohabitating with the beast, and think us unwilling to appreciate our near complete success. But, like you I would appreciate hearing of anyone who has found a way to deal with this stubborn symptom.
08-10-2017, 05:14 PM   #3
Guerrero
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Hi guys,
I have a similar story than yours... had no mucus for many years but i been seeing it now since the beast woke up 4 months ago... mri showed strong small bowel inflammation but nothing in the colon... so i guess mucus could come from small bowel or my colon is producing more mucus for some reason without crohn involvement.. no idea..
08-11-2017, 07:34 AM   #4
Sophabulous
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I've noticed my appetite is a bit thin on the ground recently so I've just weighed myself and I've lost 4 pounds in the last 10 days or so. That might just be stress, it's been a horrendous couple of weeks at work, but I'm starting to wonder if something is afoot now I'm piecing these things together. I know most people go into catastrophic flares that are really dramatic, but that doesn't really happen with me. I just gradually get more bad days than good, initially just weight loss and fatigue, but I started getting pain a few weeks ago and now this too. I smell a rat
08-11-2017, 03:41 PM   #5
Tuff
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I've been having mucus for a few weeks, usually just in the morning. Took me a while to figure out that it was caused by soft drinks. With this heat, I'd been buying it, I don't normally drink it. As soon as I switched back to water, it went away. Could it be something you're eating or drinking? I just can't find anything that I can drink safely
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08-12-2017, 04:58 AM   #6
Guerrero
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Interesting.. but in my case I mostly drink water so can't be the case.
08-13-2017, 04:50 AM   #7
Sophabulous
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I've been having mucus for a few weeks, usually just in the morning. Took me a while to figure out that it was caused by soft drinks. With this heat, I'd been buying it, I don't normally drink it. As soon as I switched back to water, it went away. Could it be something you're eating or drinking? I just can't find anything that I can drink safely


That's an interesting point Tuff. There's nothing new I can think of that could be causing it. I think I'll go back to a food symptom diary and see if that sheds any light.
08-14-2017, 05:17 PM   #8
Tuff
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It could be inflammation as well. If you're having other symptoms too, maybe it's time for a colonoscopy. You know your body best. I've been losing weight lately too, which is worrisome.
08-14-2017, 05:41 PM   #9
Pauline H
 
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Am I the only person with crohns who is piling weight on and can eat almost anything ! I wonder if they got my diagnosis wrong ?
08-14-2017, 05:56 PM   #10
Sophabulous
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Thanks Tuff, I had one in March which shows azathioprine hasn't touched the inflammation. It's a very long story, but basically I've been waiting months to find out what's happening. I've had some paperwork through asking for bloods to screen for a biologic. Believe it or not I'm on an urgent list - my appointment isn't until September. A full 6 months after the colonoscopy showing little improvement *sigh*. I'm changing hospitals though, I've been really stressed out at work recently and I just can't carry on waiting months between appointments when I have worsening symptoms all the time. It's like they acknowledge that my maintenance meds do nothing, write me a prescription for pred and are then surprised when I call again in 3 months worse than I was before. They are very overstretched and the NHS is not getting what it needs right now by a long way, but at least the waiting list where I'm going is much shorter lol. You know it's bad when you WANT a colonoscopy so you can say I told you so! I hope you can get to the bottom of your weight loss soon, it's no fun trying to gain it back. If someone told me 10 years ago I would be moaning about trying to gain weight I would have slapped myself!

Pauline H that made me chuckle! The repeated pred/liquid diets have helped me gain and maintain my weight but I'm actually just as symptomatic as I was before, it's just different symptoms! This disease is so messed up, people automatically assume I'm cured now because I'm no longer underweight. Not by a long shot but do carry on
08-15-2017, 02:36 AM   #11
Guerrero
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Yes you are right you cant wait 6 months between appointments...
08-15-2017, 02:50 AM   #12
Sophabulous
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Yes you are right you cant wait 6 months between appointments...


I've given it long enough now and it just isn't getting better. If I was in remission then fair enough, I wouldn't bother them but if I wasn't bothering them I doubt I would have been seen at all this year yet
08-15-2017, 05:14 AM   #13
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Am I the only person with crohns who is piling weight on and can eat almost anything ! I wonder if they got my diagnosis wrong ?
I have been putting on weight and it is driving me crazy. But mine I think is due to the steroid Uceris. I want off that drug since I am not feeling many symptoms like others describe in the post.
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08-15-2017, 03:34 PM   #14
Pauline H
 
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I was blaming the prednisolone but have been off it for a month now and still eating for England and piling weight on . The only symptom I have is diarrhoea and the odd twinge of pain a couple of times which have both settled down . At night I can't fasten my trousers as they are so uncomfortable :-(
08-21-2017, 03:22 AM   #15
Guerrero
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Do you think mucus is linked to inflammation?

I'm having it since my last flare but doctors dont seem worry and much interested about it... they say mucus is the liquid used by intestines

Do you think then its important to report it or check which food can trigger more mucus or that just dont makes sense as it's not a sign of active disease??
08-21-2017, 03:28 AM   #16
Sophabulous
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I really don't know what to think if I'm honest. It lasted a little over a week and has stopped completely now! There had been no change in my diet that week that I can think of? I will mention it next time I'm there just because it's new, but I'm not concerned now that it's stopped again. Very odd!
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