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Not sure if I'm flaring

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Posted 12/8/2010 6:37 AM (GMT 0)
I was diagnosed with UC about 7 months ago at age 25. From day 1, I starting using mesalamine enemas and went into remission. Yesterday, my stomach starting hurting -- bloating and cramping. I would temporarily feel better after passing gas (which I felt I had a lot of) and also I felt and heard some groaning from my blatter/intestine area. Today, I felt like I had to go to the bath room about 5 times, at first my stool was a bit loose, and the later ones I had just gas and what appeared to be mucus, but NO blood. I looked up the symptoms and it sounded more like irritable bowel syndrome and not a UC flare, but I want to be sure because I have sort of been freaking out (which might be making it worse). Has anyone else had this experience?
Posted 12/8/2010 7:32 AM (GMT 0)
You're flaring. Blood isn't always a symptom because it depends on how fragile the lining tissue is.

Did you completely go off the enemas?

Start them again nightly asap.

q
Posted 12/8/2010 8:01 AM (GMT 0)
No, I haven't gone off of them. I have been consistent, using them nightly. OMG are you sure??? What should I do!?!??!?!
Posted 12/8/2010 8:23 AM (GMT 0)
OK...for 7 months, you've been using the enemas nightly?


Hang on....does your stool smell really off?

Have you started any other supplements as of late?

Did you eat something very different yesterday or the day before?

The other thing...it could be a gastro virus....or....it's possible your UC is now higher than what the enemas can reach.

q
Posted 12/8/2010 7:28 PM (GMT 0)
Yes, I have been using the enemas nightly.

Stool doesn't smell unusual.

No new supplements.

I thought about the foods I ate the past week and nothing seemed to stand out as being "different".

I woke up this morning and the stomach pains are gone and I haven't had to go #2 yet. I feel I have some gas, but I have passed gas a few times with no urge to go to the bathroom. I'm just praying the next time I pass stool that it's back to normal. But if it's not, what should I do?
Posted 12/8/2010 7:39 PM (GMT 0)
So, to be clear, so far you've just had one day of gurgly tummy, then one day of diarrhea, and you're pretty much back to normal today?

It sounds like it could just have been a tummy bug. I'd give it a day or so more, and if you're still having diarrhea and stuff, call your GI and get it ASAP.
Posted 12/8/2010 7:48 PM (GMT 0)
I just passed stool for the first time today, and it came out in small pieces, but a little better than yesterday I think. Yesterday, I passed a lot of mucus. The stomach pains lasted 2 days (yesterday and the day before). Today is the 3rd day and I feel a little bit of bloating (I feel it directly under my stomach), but no pain like the past 2 days.

What would the next step be if I was flaring while using the enemas? Since I haven't had a flare since my first one, I'm not sure what needs to be done. If I see my GI, what is he going to do? Just prescribe another med? He can't actually do anything if I go see him, can he?
Posted 12/8/2010 8:06 PM (GMT 0)
If you don't improve, and you go see your GI, I'm sure he'd want to evaluate you himself (ie, talk about your symptoms in person, palpate your stomach, etc) and go from there. I'm guessing at this point he'd probabyl start you on an oral form of mesalamine like Asacol, Lialda, or Apriso. Or maybe Colazal, which is pretty similar. If this is a flare, maybe you'll need an oral mesalamine too to stay in remission. I use enemas and oral meds.
Posted 12/8/2010 8:24 PM (GMT 0)
Thank you both for responding and providing your input.
Posted 12/9/2010 2:43 AM (GMT 0)
Intersting. I got a twist to that.  Currently I feel great and started tapering off the enema. I'm skipping every other night.  The first night I skipped I had mucous mix with a little blood abount the size of a dime.  The second time I skipped I had the same and saw maybe 2 small dots of blood on my stool.

So am I flaring?  Should I go back to  daily dose?

It's only the mucous and blood on the morning after I skip the enema. Otherwise I feel GREAT!  No cramps, maybe a small girggle here or there but not very loud at all.  Also letting up on the enema has helped my sore left hip feel better as I'm not laying on it as much (the surface, not the joint).

 

Posted 12/9/2010 2:38 PM (GMT 0)
In my own experience, everytime I wonder "is this a flare or is it something else" - it ends up as a flare. For years I questioned the symptoms and tried to pass off my minor symptoms of a flare as a stomach bug or IBS but I was always wrong. So now if I see any mucus, have increased gas, cramping (without other virus type symptoms) or blood I immediately ramp up my medications and call my doctor. I have found the faster I start treatment for a flare the faster I am able to get it under control.

You may not be starting to flare but I am sharing this because I wish someone had pointed it out to me years ago. I think I would have avoided some bad flares...now I tell myself if I have to ask "is this the begining of a flare" it probably is and I would rather be safe than sorry...
Posted 12/10/2010 2:00 AM (GMT 0)
Hey thatfield....the 1st time I contacted my GI over a little blood she thought I was calling"wolf" and told me I had hemorroids according to my Colonoscopy report.  so I looked at my report and there was a metion of internal hemorroid....but "unbleeding"! 

She told me "not to get upset everytime I see a little bit of blood".  This also happened when I was tapering off the enema per her instructions.  If I didn't taper off I would have flared again a week later in Oct!

Seems like you just can't win sometimes!  I'm watching myself. I also have a sore throat and cough that is going around so I'm sure my immune system has kicked in and may be upsetting the lining too.  It's just a guess and tha's all I'm capable of right now.

Sometimes just worrying about it makes it worst too. Life is too short to get upset over a colon!

Posted 12/10/2010 2:42 AM (GMT 0)
P&H....go back to nightly. Not ready to go every second night yet. How long on nightly so far?

And you're still on the oral Asacol?

I would suggest maybe another week or two...then if all is good...every second night again.

Remember...it's NOT a failure...the butt rules. Period.

What are your bms like?  Do you have any urgency?

q

Posted 12/10/2010 3:41 AM (GMT 0)
When I asked my doctor if I need to come back if I see blood or puss they told me that it is normal to have that with UC and to keep taking them meds. That I didn;t need to call unless I was in severe pain or bleeind alot. Do you think this is bad advise...I mean that is what UC causes right. I would not want to have a colonscopy every time I had blood and puss that is for sure. Any thoughts???
Posted 12/10/2010 1:54 PM (GMT 0)

Thx Q for your post!

Stools have stayed between type 4 & 5 according to the Bristol chart.  I've skipped Sun, Tue, and Thr.  This morning (Fri) - no blood or mucous.  It was just a tiny bit on Mon & Wed.  Sill taking Asocol 2 pills 2x daily.

Also stool are organge but I also ate carrots, mango, and sweet potatoes the past days.

As for urgency...nothing out of the unsual. Once this morning after I ate. During the day when I pee maybe a tiny stool come out or it show only on the toilet paper but no urgency.

I'm also trying to streach out the med until my new insurance kicks in and I see my new GI in Jan.  Doc only allows for 2 weeks of enema at a time and a limited number of refills. I had the pharmacy contact her to make sure I have enough to get me through to Feb 1 as I'm changing providers...but we'll see. This doc hasn't been very accomodating!

Stevera:

I started right off on the meslaine enema. The bleeding stopped right away but still have some cramping & gas.  I read where it takes at least 6 weeks for the meds to take full effect. At one time I counted 10 urges to go in one day.  I'm sure your systems is also trying to adj to the meds as well.  Give it some time.  I'm learning it not always good to judge by bleeding alone. Also please add a signature to include what your on. It's helpful in address your questions :)

Posted 12/10/2010 9:12 PM (GMT 0)
P&H...well, you're definitely flaring still. The best you can do at this point is what you're doing until you can get the enema refills (your GI is a dork). Do you have a GP that can prescribe you the enemas until you change providers?


What you should/could do is increase the asacol to 3 twice daily. That should help somewhat.

Do you have enough refills to accommodate until you see a new doc?

q
Posted 12/10/2010 10:03 PM (GMT 0)
I get really freaked out over any symptom but my GI has told me that it's not always a sign of a flare up. For me, I can usually tell if I am headed towards a flare, based on increased gas and odor, frequency, urgency, discomfort, blood... Recently, I've had some of these symptoms and it hasn't turned into a flare, like my GI said, it's just gas or looseness which everyone can experience here and there. I have been trying to remain levelheaded and not think everything is a sign of a flare.

Of course, if it is a flare, you want to be dilligent and try to nip it in the bud before it gets worse. I think it's hard to tell a flare from a bug or food issue. Maybe it's not a bad idea to speak with your GI and see what the next steps are. He would probably put you on an oral medication. You could also try adding another enema or suppository in the morning. Sometimes these little adjustments can help.

I hope you're feelingbetter.

Posted 12/11/2010 1:37 AM (GMT 0)
Hi Q!

There some history that got me to this flare point.  I was perfectly happy with taking Asocol 2 pill 3x daily and using the enema 2x week but my GI pulled the plug on the enema use and two days later (Oct 15th) I developed blood mixed with mucous,  so I went back on the enema daily....then the side effects started again. Apparently taking both meds is too much for me to tolerate at once. I need to taper up and down each one!

I asked to try another med but her next step was immune suppressants which are overkills for my condition and there are still other anti-inflammatories I could try that were covered!  So to avoid the immune suppresants I lower Asocol to 2 pill 2x daily and did fine.

The other prob is that I found out one needs a 7 pH level to disolve the asocol coating and I don't have that Ph level so when the pills go through me I'm not getting any of the benefits so it was like money down the drain. The GI ignore this info and the article I found about this....so the enema was basically my saftey net. When that was taken away I flared!  I guess I could try tapering back up to 2 pills 3x day now that I've been on the enema a while...and try and keep the enema at every other night until I find out how many refills I get on my next fill.  I'll be able to re-order next week.

Posted 12/11/2010 5:19 AM (GMT 0)
When do you take the pills exactly? With food?

When do you take the bene-fiber?



Just hearing about your GI...again...yes I remember now...just makes me furious.

I'd just up the asacol to 3 and 3.

For sure you see whole pills? if they've been broken somewhat, that's still a good thing.

q
Posted 12/11/2010 1:36 PM (GMT 0)
Intersting that you would ask!  The pills come out whole and hard as a rock. They look exactly as before I took them. I fished them out daily..maybe once or even twice a day. I couldn't even squeeze them open.  They even hit them on my granit counter and heard a nice clear tap-tap-tap sound!

I take them immediately after eating food. and wash them down with 8oz glass of water per pill. I use benefiber in the morning with the pills only. The addtional water helped alivate the side effects. If I don't take them far enough apart and with enough water then I get the presistant headache (one of many).  The headache would get so bad that I don't feel safe operating a motor vehicle which effects my ability to get to work or even be productive at work.

I did have my period during Thanksgiving and this time had no UC interference, so that gave me to clue that I must be heading into remission.  I waited until the cramping went away completely before tapering the enema, but at the same time I got a soar throat and cough as there stuff going around now.  I'm taking it slow and watching myself very closely.

 I did experiment with using 1 glass of milk which seem to work but when I get a soar throat I normaly cut our dairy as dairy increase nasel mucous and I'm pron to sinus infections which would entale the use of antibiotics which I would like to avoid right now!

Posted 12/11/2010 3:39 PM (GMT 0)
I just thought of another complication of telling if your flaring or not....the med side effects!

I started using the enema every other night so I can compare my stool on the following morning when I skipped. The enema causes discoloration and makes them looser. This is crazy to take meds that give you side effects that mimic the exact symptoms of UC! Right now for me the side effects seem to be worst than my current condition. Doesn't do any good to take med that leave you bed ridden and unable to work. If I meds I need to find the right one. Hopefully I will next month when I "interview" my new GI! It's like a business agreement. If you want my business then let work together or I 'll just take my business elsewhere!

My first GI said there only two ways to tell if you're in remission...how you feel or a more clinical approach with a colonoscopy. I vote for the more clinical approach. It's too hard to guess!

Just found an interesting definition for remission:

Remission is the time between flare-ups of ulcerative colitis when people experience few, mild, or no symptoms of ulcerative colitis. Periods of remission vary in duration, anywhere from a matter of days to a number of years. Source: http://www.ulcerativecolitis.us/app/symptoms.asp

From this you can be in remission but still have some symptoms!
Posted 12/11/2010 8:06 PM (GMT 0)
Well...my stools are softer when I take the Salofalk enema...I don't consider that anything other than the enema. I personally don't care about the stool consistency because I eat foods that can make it looser, etc.

The point is to lessen the inflammation.

REgarding remission....from my perspective, you're not. And symptoms can be IBS or food related...which many have a hard time differentiating.

I think you need to maybe consider another oral med...maybe Colazal or something that is a capsule.

If you have suppositories...you can use them in between the enemas.

q
Posted 12/11/2010 9:00 PM (GMT 0)
I went to my GI and he did a sigmoidoscopy - it wasn't a flare! (the excitement comes with some hesitation as we haven't figured out what it is yet). He said by looking, he wouldn't have known that I have UC, that's how good it looked...

However... I still have stomach cramps and sharp pains throughout the day. My stool has turned completely into diarrhea. It's mostly liquid that comes out now, but no blood. He took some blood and stool samples and emailed me with the following this morning... "The lab tests are unremarkable so far. There are some inflammatory cells in the stool, which are not specific. They can be seen in many situations, including infections. So far, the stool cultures are negative."

Has anyone experienced these symptoms before without it being a flare?
Posted 12/11/2010 9:25 PM (GMT 0)
It is possible that the enemas have healed the whole area that the sigmoidoscopy can access but the inflammation is further up. It is also possible that you have a bug or IBS. I hope you get some answers. It sounds like your GI is on top of it.
Posted 12/11/2010 10:03 PM (GMT 0)
Hey stevera! 

Well that must be a load of your mind! Sound like it maybe side effects.  Have you read the literature that comes with the med?   A flex sig maybe just the trick for me too!

So how far up is your UC?  I'm rectal-sigmoid to 30 cm. If your UC isn't too far up then the flex sig may have covered the area. It starts at the rectum and goes up.  Alot of doctors treat UC from both ends (oral and enema). Try asking about an oral med as well....once your in remission you should just need a maintenance dose to keep you there longer.  Did your doc mention about tapering down the enema? Ask about switching to an oral med for maintenace.

Also try keeping a food diary.  Things to watch out for are nuts, seeds, corn, grain bread, granola....anything that maybe rough to digest.  I'm trying some gluten free foods now too and eating peeled fruits.

I heard some people may become latose intolerant with UC.  Try a lactose free diet for a week then go out and have a cheese pizza and see what happens.  I tried this and found out latose doesn't bother me.  It was worth the try!

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