"Mucus isn't something to worry about"

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Has your doctor said this to you? Is this Truth??

Because I know when I first started having early signs of his disease was the first time I saw amount of mucus in my stool. Couple years later I was diagnosed.

I still see HEAVY (seriously....sorry TMI but A LOT) amount of mucus and every time I tell my doctor or PA or Remicade nurse they all said "well mucus isn't a problem. That's not a sign of anything serious. As long as there's no Blood!"
 
I am in remission. if i see mucus and cramp crawling back I will know im starting a flare. I dont have mucus when I am in remission, or its very unusual and it would be very minimal barely noticeable. It is possible medical staff is sometimes overconfident when we are under treatment.
Fallow and listen to your instinct. If you are in doubt, ask and push for a colonoscopy/rectoscopy with biopsies.

When was your last colonoscopy?
Do you have regular Fecal calprotectine test?
 
I'd be very careful about accusing a GI doctor of lying.
Mucus can be present in IBS, which is not a result of inflammation.

Ccfa.com. IBD vs IBS.
Sorry can't do links on my handheld device.
 
I am in remission. if i see mucus and cramp crawling back I will know im starting a flare. I dont have mucus when I am in remission, or its very unusual and it would be very minimal barely noticeable. It is possible medical staff is sometimes overconfident when we are under treatment.
Fallow and listen to your instinct. If you are in doubt, ask and push for a colonoscopy/rectoscopy with biopsies.

When was your last colonoscopy?
Do you have regular Fecal calprotectine test?

My last scope was about a year ago. The day I got my diagnosis. I just had a check up with my GI PA (seems I can never get my doctor..) and I asked when I should get a scope again. And she said unless there's a big reason to, they recommend scopes ever 10 YEARS.

How am I ever to know I'm in real remission?????
I'm on Remicade and I feel good almost all days between infusions but sometimes I have days like today. I can't eat anything without having to immediately go to the bathroom.

What is fecal calprotectine test?
 
With that much mucus it sounds like there is active inflammation. I've never had a GI who dismissed mucus as something to not worry about. If you don't feel comfortable or confident in your doctor then you may want to consider finding a new one. If that isn't possible then tell them that you need peace of mind that there's no active inflammation and request that they order tests like blood work to check your CRP and ESR and a stool test for inflammation (fecal calprotectin) since blood tests don't usually tell the full story.

Just read your other post where they claim they won't do another scope for 10 years. Even in remission scopes are usually done every 2-5 years to at least screen for colon cancer. Is it possible for you to get a second opinion from somewhere else? While the person you spoke to may not have been lying, they do sound very misinformed. If you decide to peruse another GI be sure to continue going to your current office for the Remicade as stopping it could cause your body to build up antibodies.
 
Oh no, a GI who offers colonoscopy every 10 years for an IBD patient is far from optimal practice, especially to a new patient. :confused2: having difficulties reaching and talking to GI when we have concerns is not good either. I am hoping you have the chance to find another GI.
Fecal calprotectine stool test is a new test that has been around for at least a good year or 2 now. Its an easy way to monitor inflammation in the colon. Im hoping you can have access to this very soon.

when you have the urgencies, how many times a day do you go?
Do these tend to be towards the days prior to your remicade infusion? Do you notice a pattern?
 
I've had mucous while in remission since my last flare, but not large amounts and not consistently. I've also never had a doctor tell me it's not important - rather they ask me about changes/increases. My last two flares have been immediately preceded by large amounts of mucous before the more overt symptoms, so I monitor it more closely now.

I agree with other comments on the frequency of colonoscopy. I've been on a yearly schedule since 2010.
 
With that much mucus it sounds like there is active inflammation. I've never had a GI who dismissed mucus as something to not worry about. If you don't feel comfortable or confident in your doctor then you may want to consider finding a new one. If that isn't possible then tell them that you need peace of mind that there's no active inflammation and request that they order tests like blood work to check your CRP and ESR and a stool test for inflammation (fecal calprotectin) since blood tests don't usually tell the full story.

Just read your other post where they claim they won't do another scope for 10 years. Even in remission scopes are usually done every 2-5 years to at least screen for colon cancer. Is it possible for you to get a second opinion from somewhere else? While the person you spoke to may not have been lying, they do sound very misinformed. If you decide to peruse another GI be sure to continue going to your current office for the Remicade as stopping it could cause your body to build up antibodies.

I've been thinking about getting a new GI. Though I get my
Remicade infusions from my doctors office who provides me with an AMAZING nurse. I love her. I talk to her more than my doctor. Though I understand she may not be as "informed" as him. My doctor sometimes just doesn't seem concerned unless I'm flaring or bleeding. I just don't know what's a major flare or a minor flare.

If I changed doctors, I wonder if I could still go to my Remicade at my old doctor office with the same nurse. She's just really great :/
 
Oh no, a GI who offers colonoscopy every 10 years for an IBD patient is far from optimal practice, especially to a new patient. :confused2: having difficulties reaching and talking to GI when we have concerns is not good either. I am hoping you have the chance to find another GI.
Fecal calprotectine stool test is a new test that has been around for at least a good year or 2 now. Its an easy way to monitor inflammation in the colon. Im hoping you can have access to this very soon.

when you have the urgencies, how many times a day do you go?
Do these tend to be towards the days prior to your remicade infusion? Do you notice a pattern?

Excuse my ignorance, but if I'm already on the strongest meds (Remicade) and there if there is in fact active inflammation, what really can they do besides manage the symptoms? Which I'm worried they'd just say oh watch what you eat. :/ regarding if I feel sick closer to needing Remicade, usually around week 6 I start to go more often (I'm usually constipated) and it starts to become like D. So I now go every 7 weeks. I really truly usually feel fine between the infusions. I'm only on my 9th infusion or so too.

When I am feeling sick, it just depends. Yesterday I went to the bathroom 5 times with urgency between 10am-3pm. After 3pm I didn't have a need to go to the bathroom. I also didn't eat a whole lot though too by the end of the night I felt okay and had a couple slices of pizza

This morning I had D which then turned into more formed yet softer stool. And a gurglely stomach. Went to church, ate a lunch of rice and chicken and sour cream with cheese from chipotle (no spice or anything) and had an urgency to go where I only passed one gross chunk of big ol mucus. I'm feeling overheated but no fever yet.

My stomach is discomforted today with gurglin and bloating. I have to work tomorrow for 12 hours on my feet wth limited bathroom privileges so I hope I'm feeling better.

Other days when I get this way it usually only lasts one day, I maybe go 5-7 times with urgency and then it slows down and evens itself out.
 
I've had mucous while in remission since my last flare, but not large amounts and not consistently. I've also never had a doctor tell me it's not important - rather they ask me about changes/increases. My last two flares have been immediately preceded by large amounts of mucous before the more overt symptoms, so I monitor it more closely now.

I agree with other comments on the frequency of colonoscopy. I've been on a yearly schedule since 2010.

What does monitoring it look like? Do you call your doctor? What kinds of things do they do to help?

I wanna know that I'm in actual
remission (no inflammation) because I know that one can appear to be "symptom free" but still have gross things happening inside.

I feel like maybe my
Doctors say Oh Here's Remicade! Let us know if you bleed or anything and then we'll put you on some steroids. Okay bye
 
When I say "monitoring", I mean I make a particular effort to observe and note changes, because I know that if I see an increase in mucous then I will likely start to see pus and blood at some point as well - and I'll spot them sooner if I'm checking. Symptoms like diarrhea, pain, crippling fatigue, joint pain, weight loss and so on come a little bit later for me. For example, last flare I had noticed the changes in mucous etc and reported it, and my gastro started me on pentasa. That didn't change anything (never does, but I don't get nasty side effects either so I figure it's worth a try), so she gets me in for a colonoscopy. That shows inflammation, then I develop severe diahorrea and a week and a half later I'm in hospital having lost 5kg in that week. In terms of timescales - I see an increase in mucous a month or so before the diahorrea really starts, but my blood results are still coming back OK at that point. The inflammation starts to show in my blood work sometimes a few days to a week before I get really sick.

So for me, knowing and keeping track of my early warning symptoms gives me time to try the low-impact drugs first and organise myself a bit knowing that I might be out of action for a while at a point in the near future. Everyone's disease is different, but if you can identify the patterns that happen during the course of a flare then you're better placed to give your doctors useful information about what's happening inside you, and have some sense in your own mind that you know what to expect. That's the biggest psychological help I've found - feeling like I can identify specific markers that indicate whether I'm actually flaring or just having an off day.

If it helps - yes, gross things might happen even when you're in remission. They might or might not be related to Crohns. You should tell your doctor about them, and you should absolutely especially tell them about changes in symptoms, and if it seems like your doctor doesn't listen well you might need to change doctor. Like I said, I see mucous regularly even though I'm in remission (confirmed by blood tests, colonoscopy and biopsy) - I have a lot of historic damage to my insides and my guts function a bit oddly at the best of times. Even so, I personally would be worried if my doctor told me mucous wasn't a problem, because I'm familiar with the pattern I see when I get sick. I would expect them to do some blood tests if I reported seeing large amounts of mucous, and I'd expect they might suggest a colonoscopy if it persisted or was joined by other symptoms. Unfortunately the only way to get familiar with your patterns is to live through them.

Edited a couple of times because I think I was missing the point - I'm sorry if I'm off topic a bit.
 
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Excuse my ignorance, but if I'm already on the strongest meds (Remicade) and there if there is in fact active inflammation, what really can they do besides manage the symptoms?

They could increase your dose of Remicade or infusions, they could try combination therapy by adding an immunosuppressant like 6MP or Imuran, they could add Methotrexate and yes they could add steroids as needed if the inflammation is bad enough. If none of this works in getting the inflammation under control then surgery is a last resort (doesn't sound like you're at this point, just letting you know about possible treatment options). To find out if you're in remission or if the Remicade needs adjusting (besides going by your symptoms) they would need to run tests like blood work, fecal calprotectin and have a colonoscopy with biopsies to check for microscopic inflammation that may be missed in other tests but can surely cause damage down the road.

If you do go to another GI then they will likely have their own clinic for infusions unless you're seeing another from the same practice. If you want to stay at this one then you're going to need to be your own advocate and politely demand to see your actual GI. Set up an appointment to see them and make it clear that you want to see them and not their assistant. If the only thing keeping you there is a wonderful nurse then you won't be getting the care you really need.
 
My answer is the same as Jennifer.
Going to the bathroom 5 times a day with urgencies + mucus as you said also is for me clearly a disease that is not under control. I really think your inner feeling/instinct when starting this thread was right. I'd fallow this direction for better care, monitoring and full remission. The nurse is a complement to the doctor. the doctor is the most important person to have a confident relationship with because he/she is the one who takes all the decisions with you.
 
My GI has passed off my mucus as well :-( sorry you have to deal with a GI that doesn't listen. ((((Hugs)))
 
Mine too - but my disease has really flared badly about a year after I started complaining about mucus issues, so I don't think I believe her even if she is the expert. (I'm not absolutely certain but I think the theory behind "mucus doesn't matter" is that mucus is your body's way of attempting to heal itself?)
 
My husband has been having mucus in his stool for the last couple of days. He has never had this even when he was flaring. It's a new one for him. He is not officially in remission either but he has completed the first 3 loading doses of Remicade and was feeling newly born right after the first dose. We have informed his GI about the mucus and discharge he has been having for almost 3 weeks now. GI dismissed the discharge but we are waiting to hear what he says about the mucus.
 
Before my diagnosis, I was passing nothing but mucous, so I know what you mean when you say lots. I'm on remicade and doing well in my gut but not well in my joints.
 

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