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What does remission mean?

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Ulcerative Colitis
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Posted 1/19/2014 10:12 PM (GMT 0)
Hi - I am new to this site as a member. Thank you to all of those whose past posts I have read. I am a 42 year old female and in 2009 I was diagnosed with UC after about 20 years of trying to find answers to my pain, mucous and bleeding. I was always told that there was nothing wrong and that I just shouldn't eat chocolate or that I just needed to learn how to handle stress or that I should drink more water. I guess because I was never in need of emergency room care no one ever really took my complaints to heart.

That said I finally found a gastro dr. who immediately knew what was going on. I now currently take:

- canasa 1000mg 1x per day
- probiotics
- l-glutamine
- and I am dairy and gluten free.

My question is this - what is remission exactly? My DR says my ulcerations have gone down (colonoscopy last month) and that everything looks fine. that I am in remission. My problem is that I still have mucous every day - loads - blood most days, bloating like crazy, and massive diarrhea about 1-2 times per week where I can't even drive my kids to school and then am constipated all the other days. When I tell my DR these issues he says that sounds about right. Is this how everyone else here with UC lives when they are in 'remission' ?

Thanks so much for any thoughts you might have one this.
Posted 1/19/2014 10:29 PM (GMT 0)
Welcome to the forum.

You'll get varying definitions of remission on this forum. Many believe it's just the absence of all gastrointestinal symptoms, but there's far more to it than that. It's hard to quantify the complexity of this but I'll give my personal definition of remission.

Remission is absence of all leaky gut symptoms. I'm afraid this isn't just limited to gastrointestinal symptoms like cramping, blood or mucus - it's includes things like acne, migranes, chronic fatigue, joint pains, etc. Trading one pressing problem for another does not indicate remission in the slightest means.

I know it's strict, but it is what it is. The emerging medical literature seems to suggest that all of those things are manifestations of poor gut health, where the microbial community (or lack thereof) is at the root of it all.

My advice to you would to work on expanding your microbial diversity. Add in fermented foods, take "dirt" probiotics like prescript assist, diversify the fruits and veggies you eat. This gives your body the best chance for weeding out the pathogenic bacteria, and for preventing problems in the future. It's believed now that almost all of the immune system is in the gut, so that is arguably the most important thing one can focus on.

I see you are dairy and gluten free, which is a great start. I do think gluten is problematic, but dairy is a gray area because things like kefir seem to benefit many gastrointestinal conditions. You might have better luck adding in goat or sheep dairy like I did.

Best.
Posted 1/20/2014 2:42 AM (GMT 0)
There's different levels of remission:

- Symptomatic
- Endoscopic
- Microscopic

The first one is self-explanatory; endoscopic refers to what can be seen with the naked eye under a scope - ulcers, inflammation; and microscopic refers to inflammation at the microscopic level.

Doctors try to aim for endoscopic remission at least. I'm not sure what your doctor meant by your ulcers "going down" - do you have fewer ulcers or have they all gone? Is there any inflammation or scarring? It's common to have IBS symptoms in remission, but what you are describing doesn't sound normal - the blood and massive diarrhoea 1-2x a week, for example. Personally I would suspect lingering disease activity: I don't think you are entirely in remission.

I'm not too up on the rectal meds, so hopefully somebody else will post and give you more advice on those. (Quincy >_>)
Posted 1/20/2014 3:36 AM (GMT 0)
Where do you live? Seems like the docs really don't know what they are doing. You are definitely not in remission. You should be taking an oral 5ASA on top of the Canasa.
Posted 1/20/2014 1:10 PM (GMT 0)
Thank you all for your comments. I do still have ulcers and I also have scarring according to my DR. I will talk to my DR about the oral medications. Thank you for your advice.

On fermented foods - I have always been interested in these but they seem to cause me horrid bloating and gas pain. Any thoughts on why this might happen?

I also recently had vertigo and my general practitioner said it was caused by being dehydrated and probably because I had, of course, had horrid diarrhea several days before. Has this happened to anyone else?

Again, many thanks for everyone time and comments.
Posted 1/20/2014 2:10 PM (GMT 0)
"On fermented foods - I have always been interested in these but they seem to cause me horrid bloating and gas pain. Any thoughts on why this might happen?"

I couldn't eat that stuff when I was still healing or down right sick - now that my tummy is all hunky dory, I eat fermented goodies everyday - patience !
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