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So close to remission - steps to tip over the edge

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Ulcerative Colitis
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Posted 12/12/2016 7:00 PM (GMT 0)
Hello all,

After a year and a half of symptoms and a UC diagnosis early this year, I am the closest I have ever been to remission. For the past month plus, I have drastically reduced pain, 1-2 bm a day (usually formed), no bleeding, and feel mostly less sensitive to food. I have a few symptoms that tell me I'm not fully in remission. However, I am lingering in this "close to remission" stage and have been for a while.

Does anyone have any suggestions as to how I can make it to full remission? Or, is this what "normal" looks like to me now?

Just wondering what everyone else has experienced, and if you have any tips for making it into remission!

Thank you, for your responses to this post and for ALL this group has done to help me and others through tough times. This community is amazing.
Posted 12/12/2016 7:31 PM (GMT 0)
Homemade nopal water might be just enough to get you completely there. It got me into remission from a simmering flare and kept me there for a year until I foolishly stopped drinking it. There are a bunch of threads on here about it if you do a search. It's cheap and easy to make. Just get some nopales cactus pads from a mexican or asian grocery store. I always tried the buy the pads already cleaned because then I didn't have to mess with the thorns. Cut up about 4-5 oz of the pads (I had a little scale to weigh them) into 1-2" pieces and put them in a pitcher with 2 qts of water. Refrigerate overnight before drinking the water. Leave the pieces in the water as you drink it. Drink 1-2 glasses a day. The water will get thicker the longer the pieces soak but it's not gross at all. It reminds me of cucumber water. Nopales pads are cheap -- about $1.99/lb. A pound would last me 2 weeks. Might be worth a try!

good luck!!
Posted 12/12/2016 8:02 PM (GMT 0)
Are you on rectal meds?

q
Posted 12/12/2016 8:23 PM (GMT 0)
This forum is pretty big on rectal meds, so an anti-inflammatory canasa suppository or rowasa taken nightly might do the trick and get you into a remission. It'll compliment your current Sulfasalazine/Azulfidine.

Sonetimes time is key, healing can be quite a slow process. Mucus can linger as an IBS symptom long after the UC symptoms subside, in roughly 20 percent of us.
Posted 12/12/2016 8:57 PM (GMT 0)
I am neither on rectal meds nor have I tried nopal cactus. I am very open to both of these things!

It's difficult to be patient. Dealing with this illness has been a major learning experience in regard to finding out about how the digestive system works and understanding how I deal with pain and health challenges (the answer being - impatiently).

Thank you for sharing! I'll continue to look through past posts as well.
Posted 12/12/2016 8:58 PM (GMT 0)
what are the few symptoms ?

maybe start slowly adding in some raw fruits/veggies -
Posted 12/13/2016 1:05 AM (GMT 0)
I agree with all the advice here and would add maybe you could try cutting out all gluten and sugar for a week or so just to see what happens...I see you limit it already. Also finding a way to add more natural fiber might be helpful.

My go to's for quelling mild symptoms are doubling my lialda, strict SCD (including the homemade probiotic yogurt), rectal meds, and exercise. I hope you get over the hump and enjoy a nice long remission.
Posted 12/14/2016 1:56 PM (GMT 0)
Hello,

Per recommendations, I started back on Canasa yesterday and am cutting gluten and added sugar for now. I had started adding some raw veggies back, too, and seem to be maintaining this level of wellness.

So, if I don't make it to remission by late winter/early spring, my doctor intends to get me started on anti-TNF and/or immunomodulators. I hope I can avoid these, but by that point, it will have been a 2 year flare so I suppose it is time.

Thank you for your help!
Sara
Posted 12/14/2016 6:04 PM (GMT 0)
If you aren't seeing signs of improvement within a few weeks of Canasa you may need mesalamine enemas instead to reach further than the Canasa can.

You might also want to try a different oral med. While they are all mostly the same, then can have different release mechanisms that work better for some people. I tried several and found that Asacol HD worked the best for me. Unfortunately it wasn't enough and now I have added Entyvio which is working great!

You are so close to remission with such minor symptoms I hope just doing some tweaks will be enough to get you the whole way there!!
Posted 12/16/2016 5:16 PM (GMT 0)
After alot of trail and error, we added humira to my meds. Still have 6mp and canasa as well but I really feel great. Humira is now once a week and it was amazing the difference. I felt like I was just not able to get there before. Everyone is different but I wish I'd agreed to Humira earlier.
Expect remission and don't settle for less. Good luck
Posted 12/16/2016 9:11 PM (GMT 0)
Thank you all. I've been eating high fiber veggies (used to be disastrous) but now, I seem to be able to eat them without consequence. I'm so happy.

I'm struggling to cut the sugar and gluten. Will keep trying.
Posted 12/17/2016 3:53 AM (GMT 0)
Hi,

I've had UC for 20 years now. I've tried many treatments natural and conventional with varying success. I'm currently in remission but I had a short flare a few weeks ago. I'm currently on imunosuppressants and have been for the last couple of years.

During my recent flare, I found an article about apple cider vinegar. There was a study done on mice which found that apple cider vinegar can improve symptoms of UC in mice, so i thought, why not try it.

I started taking a very small amount of ACV with water first thing in the morning and last thing before i go to sleep. The amount i take is basically just enough to cover the bottom of the glass and then i fill the rest with water and drink it. I use organic apple cider vinegar with 'mother' in it.

I found that 3-4 days after taking it, my stools went back to normal (which was a huge surprise after having loose stools for a few weeks) and i stopped losing weight. The other thing i noticed was that I had hardly any gas or bloating.

I've been taking it since and I'm finding that my symptoms are just about gone and that I'm much less sensitive to what I eat.

Apart from apple cider vinegar, I try to eat mainly organic food, I stay away from high fiber, I also avoid milk and cream but do eat butter and cheddar or tasty cheese. I found that spicy food can also give me problems.

I hope this helps someone. It's very easy and cheap to try and should make a difference within 3-4 days.
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