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Who is flaring? Who is in remission?

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Posted 3/14/2011 9:24 PM (GMT 0)
I am currently in a flare. Both UC and Arthritis. Doc put me on a short stint of pred, cant wait to get off it.
Posted 3/14/2011 9:42 PM (GMT 0)
I like to hear about others in remission too :)

Yeah, I am yo-yo'ing at the moment. Some days I have all D, the next solid, and the next after...who knows! But my gut doesn't hurt, I don't have the urgency nor blood so maybe it's just my IBS that is acting up.

Pauly, I am already on a similiar med to Imuran. It's called Mercaptopurine or 6mp for short. It's basically the same med. I've been on it for 5 years but I can't get into the proper range for it to work right. I will be crossing my fingers for you though!
Posted 3/14/2011 9:43 PM (GMT 0)

I am in full remission with the use of Imuran.  So far so good.  I also use Canasa suppository every other night.  No signs of uc at present and it's been like this for at least 1-2 years. 

MyUC

Posted 3/14/2011 10:19 PM (GMT 0)
I've been in remission for 2 months now (thanks to 5-asa oral and rectal / plus spinach+sunflower seeds)
After having flared for a year (with no obvious explanation to what brought it on) I'm very tentative about this remission. Kind of always waiting for the other shoe to drop... hoping to start feeling more secure soon. Doing well weaning down to maintenance doses as opposed to treatment doses. : )
Posted 3/14/2011 10:52 PM (GMT 0)
I am doing well. I really thought I was total remission last January/early Feb, but then a week or so ago I started seeing a little blood - just on the TP, just the first stool of the day (I usually have 2-3, all in the morning.) Soooo.... I have restarted the enemas and increased my VSL DS.... the stools are formed, and I'm only seeing the TP blood every other day or so now.
So - not total remission, but close. I'm playing in a Pit band for a show right now, and I'm not having to worry about if/when I eat or the need to run for the bathroom, which is great!
Posted 3/14/2011 11:10 PM (GMT 0)
I am in remission as far as how i feel. No blood, normal movements and all round feeling great. Doc wants to take a flex in 6 months to see if i am in endoscopic remission.
Posted 3/15/2011 12:30 AM (GMT 0)
I am really really close! I started Apriso and Mesalamine Enemas along with my Remicade and I think that did the trick... I'm at the 6 week point on my remicade infusion now so the next 2 weeks will tell me if I need to up my dosage or if the Mesalamines will help enough.

Now, the things that's really bothering me is I have a terrible upper right quadrant pain that's defying diagnosis. I've have an H. Pylori blood test & tried Dexilant to see if it's an ulcer. I also had an ultrasound of my gall bladder and a HIDA scan to check gall bladder function. Labs to check liver and pancreas were normal... next stop is a full colonoscopy and endoscopy April 1st. Frustrated!!!
Posted 3/15/2011 12:35 AM (GMT 0)
I've been in remission for almost two years now.  I got there by taking Asacol 12/day (sorry, forget the mg off the top of my head, but it was regular Asacol, not Asacol HD), using mesalamine enemas nightly, a daily high-quality probiotic, and a relatively quick course of pred, starting at 40 mg.  I tapered off with no issues.  Since then, I've switched from Asacol to Apriso (4/day), tapered the enemas to 2/week, and stayed on the probiotic.  I don't follow a special diet, but I do try to limit processed food and never eat MSG or artificial sweetners, but that's how I ate pre-UC. 

I'm very lucky, I know, but I also credit my remission to NEVER skipping meds and using the enemas. 

Posted 3/15/2011 12:46 AM (GMT 0)
I'm having the best bowel movements of my life.

See my signature.
Posted 3/15/2011 1:37 AM (GMT 0)
I am in remission :)  Taking Asacol and using the Rowasa...see my siggy.

I hope it continues to work for me for a long long time.  I use them faithfully.

Thanks for the thread Sherry, it's nice to compare notes sometimes.

Posted 3/15/2011 2:06 AM (GMT 0)
You're welcome Amy and I agree that it's nice to hear other peoples story and find out what is helping them in one post. For the ones that are still having difficulty, hang in there and know that we understand and care.
Posted 3/15/2011 2:23 AM (GMT 0)
In remission right now. Had a bit of a flare up, very minor, couple months ago. Went to my alternative Dr. and got some supps and upped my probiotics. Thankfully everything is under control now. I even had to take a round of antibiotics last month, which terrified me. Everything is ok now.

For everyone that is in a flare now, I hope you find relief soon.
Posted 3/15/2011 2:34 AM (GMT 0)
I have been in remission since I changed meds back in Late August / September.

I started a new job last week, I sat in bumper to bumper traffic today and I had concerns but none of them had anything to do with UC and urgency. I have put a lot of fiber products into my food and I only go once per day. Today I had to jump start the 'go' with a lot of caffeine and stimulants upon waking.

Hydration + sulfasalazine + psyllium + 1 gallon of water + Boswellia real food ( eggs, high fiber pop tarts, pasta, Nuts, Honey, Mission oat grain soft tortillas, waffles, fruit, famous amos cookies, $8.00 burgers at lunch downtown and store bought yogurts )

Less processed food overall and less protein powder and 'micronized' BCAA's.

Lots of coffee and 'white flood'

Post Edited (aguywithuc) : 3/14/2011 8:44:09 PM (GMT-6)

Posted 3/15/2011 2:19 PM (GMT 0)
Thanks for posting this thread, Sherry. I am glad to hear how others are doing, since I am not around as much as I used to be. Prayers for all of you looking for remission, and prayers for those in remission that you stay there.

I am doing well-I have been in remission for almost a year now because of Remicade. I am hoping it works a LOT longer than Humira did for me, and I am working on my stress level and overall health to help with that. Stress, illness and antibiotics are my big triggers.

I went dairy free (well, almost-not 100%) after testing as highly sensitive to casein, and that helped a lot in terms of how I feel. I was constantly bloated and uncomfortable, and now I feel much better. It didn't seem to have any real effect on my UC symtoms, but it is hard to imagine that eating something to which your body is sensitive wouldn't cause inflammation, so I will stick with the dairy free. Unless someone takes me to the cheesecake factory and then I will suffer through the next day for a slice of that goodness, lol. I am trying overall to eat better. I try to eat lower amounts of gluten these days as well as cutting out dairy, but that is a tough one for me.

Currently, I am 16 weeks pregnant, and it seems to be agreeing with me. I have a Remicade infusion today, and I guess we'll talk about scheduling as things progress-they told me they would alter the dosage in the 3rd trimester.

I am terrified of delivery setting me into a flare, but for the time being, I am enjoying the remission I have. Other than Remicade, I am on a low dose of Asacol. I haven't been using any rectals. I don't need them at the moment, and since I am up peeing non stop these days, it is really hard to retain anything. I have them if I need them though, and will use them at even a hint of issue.
Posted 3/15/2011 2:42 PM (GMT 0)
Laura, as far as i've read most of pregnant women UC tends to enter remission during the pregnancy. Hope all will be ok with you.
Posted 3/15/2011 4:32 PM (GMT 0)
You are so right Kiolm! Soooo ssssshhhhh if we must say the "R" word, lets whisper! Maybe it wont' hear us! :)

Congrats Laura on the the pregnancy! I will be keeping my fingers crossed for you and I hope things go smoothly during AND after.
Posted 3/15/2011 4:38 PM (GMT 0)
I have been up and down for years...I am currently beginning a full flare and have to make some decisions on my meds. My doc has been recommending Remi or Humira:(. I know I shouldn't have but have been taking steroid enemas too long...
Posted 3/15/2011 8:23 PM (GMT 0)

kiolm said...
The first rule of remission is "You don't talk about Remission" smilewinkgrin

tongue
Posted 3/15/2011 8:48 PM (GMT 0)
I've been seriously bleeding for 6 months now having had 10 years of remission and a colonoscopy that said everything was clear cry
I am now trying nicotine patches, I'm not a smoker, but trying almost anything. 12 400 mg asacol/day and azathiaprine 50 mg. Feel sorry for myself and always exhausted.
Posted 3/15/2011 9:02 PM (GMT 0)
I am flaring at the moment, I have been trying to get off Prednisolone since hospitalisation in August 2010, but everytime I get to a low dose I get pains and nausea again and have to go back up.  I am also anaemic my ferritin is about 6 and should be 22-100.  

I am seeing the nurse next tues about my medications, she has a new one she wants me to try similar to Azathioprine. 

I am fed up of it but more with trying to keep up with work than anything else.  They seem to expect out of hospital=better.

Posted 3/15/2011 10:51 PM (GMT 0)
Dizzy, the same thing happened to me and I finally started 6mp, against my desire, and now I am doing much better. I had to taper extremely slowly off of prednisone and I've had terrible side effects but I am starting to get back to my old self. You will improve, don't get discouraged.

lion, 50mg of aza seems low?
Posted 3/15/2011 11:26 PM (GMT 0)

Red_34 said...
I am just curious to see how we all are doing. Are you flaring at the moment? Are you coping okay? Do you need a "shoulder" to cry on or an ear to listen?

Are you in remission? What did you do to get you there?

Me? I am in the perpetual state of in between. Not quite flaring but not quite in remission either. Each day is different. Some days I do really well and other days I can't get off the toilet. I yo-yo back and forth. No bleeding though, which is good! smilewinkgrin But for the most part, I feel okay Uc wise. So who knows, maybe THIS is my remission?!


First symptoms/flare -- late 2007. Diagnosed w/pancolitis, ulcerative colitis. Prednisone to remission within weeks. Mesalamine (2400mg/day) and Azathiaprine maintenance. Normal diet -- anything and everything. Occasional stool diameter decrease corrected by psyllium fiber. Blood in stool periodically.

Second flare -- late 2008. Prednisone to remission within weeks. Off Azathiaprine. Omeprazole (for acid reflux) and Mesalamine (3600mg/day). Normal diet -- anything and everything. Occasional stool diameter decrease corrected by psyllium fiber. Blood in stool more regularly.

Third (current) flare -- began late Jan early Feb 2011. Going into 7th week. Began as severe constipation (which continues). Progressed to intense gut pain and bloating. Currently on Prednisone 40mg/day. 9 week Prednisone schedule. Drastic diet change (and personal/intellectual awakening wrt what might be necessary in the future) started 4 days ago. I feel as if I might actually be healing -- slowly. I should have seen a doctor during the first week of constipation when there was no pain accompanying the gut distension and bloating. Oh, also they have me on Mesalamine 4800mg/day. I'm going to inquire about enemas.

Much thanks to all moderators and contributors here. Best wishes to all.
Posted 3/16/2011 12:13 AM (GMT 0)
in between. upper inflamation won't go away, usually constipated like this for 2 yrs seems to be getting better. just started pred to see if it will kill the inflamation. also on 200mg imuran,iron
Posted 3/16/2011 2:20 AM (GMT 0)
In remission from Jan 14.11 since antibiotics for hpylori. No blood or diarrhea yet. (crossing fingers)

But having some mild left sided pain, I think due to not frequently needing to go to the bathroom. I personally think the poop stagnates in that corner and starts to burn and irritate colon.

Trying to hang in until surgery April 19th, 2011 for gallbladder removal.
Posted 3/16/2011 2:30 PM (GMT 0)
I began a flare in early October 2010. I woke up the morning after a Yoga class and had much pain in my lower back just left of center where bending forward between 10 and 20 degrees would cause a very sharp pain. Within a couple of days I began bleeding and having other undesirable symptoms. I was taking generic Rowasa enemas twice a week until one week after the bleeding started and then I terminated the experiment. They obviously failed to prevent me from flaring.

Anyway, after about 6 weeks the bleeding had stopped and most UC symptoms stopped as well but I continued to have to use the toilet about 8 times a day but I had no urgency. This situation has continued and I am now still using the toilet about 6 times a day. Unfortunately, my fistula lost its fibrin plug a month or more ago so now I need to go have surgery on it again to try to get it to heal. I did have an anal ultrasound last week which confirmed that there was a single tract. Unfortunately, the doctor noted that it was rather long and went between the various muscles in a far less than ideal path. I had to do a fleet enema for the ultrasound and it clearly did harm to my colon since I had pain throughout my left side and across the top for several days. I started having yogurt three times a day to compensate which seems to have worked well. Just over a month ago I started to make my yogurt out of VSL#3 based on information I gleaned from the forum.

I have a colonoscopy scheduled for the end of the month so hopefully we will get a better idea on what is going on inside me. I'm thinking that the additional stools may be caused by the fistula. I had a stool test in January and nothing turned up.

Anyway, it looks like my Spring will be spent having surgery on my fistula. Hopefully, the seton that the doctor wants to put in first doesn't need to stay very long since having stuff ooze out of your butt is not very aromatically pleasing to say the least.

- Tom
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