HealingWell
Search Close Search
☰

Trying to decide on the next step for this flare

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/11/2010 4:06 PM (GMT 0)

suebear said...
He might not think your symptoms warrant a steroid? I think your symptoms are indicative of a mild-moderate flare which can be controlled with lesser evil drugs. Entecort is a steroid and although not as bad as prednisone it's still not the best choice for a mild to moderate flare. You have to understand, flares don't necessarily get under control immediately. They can take days, weeks, or months to respond to treatment.

Sue

Sue I find your last two sentences very interesting. Are you saying that if my flare is not currently responding that great to my 5asas that in maybe days weeks or months it could all of a sudden respond? How so if I have been taking these all along and they didnt prevent the flare in the first place? I can imagine it would be a lot worse without them.

I love Coffee- I have started to do this with my agenda book that I always carry with me. But I just dont understand transit times enough and all that to recognize what the culprit is. For example, twice I had bad days after eatting grilled veal sandwiches..?? I dont get it..it was not fried and it was just bread

If I could get this question answered I would know whether to start the cortenemas or not- IF THE INFLAMMATION IS IN THE SIGMOID OR JUST ABOVE CAN I STILL HAVE DIAREAH? I always thought Diareah was only from in inflammed upper colon like the transverse or beyond..At times I am having a semi formed stool and at times diareah.

Mistix- I left my appt on Monday leaving off that we would wait it out. The prednisone was only an idea that point, as was the Imuran . The next couple of days went bad so I called the GI- didnt speak to him- I called in a panic and asked for the steroids and his secretary called them in for me on MY REQUEST. So really based on what is going on he is not pushing them on me. I do have them and if things get worse I must take them in order not to loose more weight, blood etc.

I have thought about changing probiotics but I still cant get my head around the fact that VSL has all these bacteria and why would I change to one with less bacteria?

I am debating whether to try the Ultimate Flora Critical that lots of others here take.

Posted 6/11/2010 4:09 PM (GMT 0)
also..I love coffee...
I did drop two bms a day when I dropped coffee and tea as well.
I dont really drink milk ..but I love my yogurt and cheese toooo much right now.

I dropped fish oil but I Think I may have been taking too much. How much are you taking and which probiotic are you taking?

Also would like to try metamucil caplets but I dont know where to go with that either...really trying to find physillium SEED instead of the husk but I Cant find it.
Posted 6/11/2010 5:10 PM (GMT 0)

my symptoms also improved when I stopped eating yogurt in the am

every morning I would have coffeee and yogurt, when i gave up both i had like a 90% improvement- that was while i was on lialda and rowasa

maybe try a bland low residue diet

i dont understand the transit times much either, but : after coffee and yogurt, i would go ALL day at work and then not be so bad in the evenings.  after a year and a half flare it was like an aha moment.

from what i have read here about probiotics is that its trial and error, even though vsl is strong , maybe its just not effective anymore for you

i started the primodophilus reuteri and  noticed improvement

i added metamucil caplets . i too searched for the husk but couldnt find it, so i figured i would just try the met. capsules since they were so easy to get.

have you ever been on pred before? has it helped you in the past?

everubody is so different with this disease. 

I see you have pancolitis, whereas i have it mostly in my recto sigmoid area with a skip patch on my right side(?)

i hope you feel better soon,

oh, and one thing, tension tamer tea, by celstial seasons, i love this stuff, i find it very soothing- it has peppermint, cinnamin, ginger, chammomile tea mixed. 

Posted 6/11/2010 5:58 PM (GMT 0)
I eat my yogurt in the pm all the time with my vsl. ITs 90% lactose free itself actually
I have tried a bland low res diet but I just end up feeling so tired and then when I go back to eatting soming else its here we go again...
I am going to look up that probiotic..I notice Quincy takes it too..maybe after this box of vsl its time to see if something else will work.

Yes I have been on pred three times before..once starting at 40mg and tapered over 3 months and the toher times i was on 15-20mg and taper from there..that was while i was on humira..i could not go over 20mg..protocol for the study or something

ooo that sounds like a nice tea..do you buy it anywhere?
Posted 6/11/2010 6:06 PM (GMT 0)
its made by celestial seasons- you can get it everywhere, target, acme, etc.

 

have you ever actually been in remission?

Posted 6/11/2010 6:07 PM (GMT 0)
Krissy - I know your symptoms seem mild to moderate but one issue to consider is that it does not seem you are not staying in remission for long periods. I am in the same situation. I have had a few major flares that were pretty bad but for the greater part of almost four years I have been in some state of flaring. Most of the time it is a mild flare (even milder than yours I think). During the mild flares - I may go anywhere between 2-4 times a day with some blood and some mucus. My stool are usually formed but very soft. I have bleed more often than not since October 2006... While I have only had two really bad flares and the rest have been mild to moderate, my UC has been stubborn and not well controlled. Some inflamation just hangs on and on and on for me. My doctor told me that it is more dangerous to allow even a mild flare to hang on for years and years than to take a drug like Imuran. That may be why your doctor is asking you to consider it. I will start taking it in September after my baby is born. I totally agree with Mistix about taking your docotr's advice and if you are not comfortable with it getting a second opinion. When you do decide to try to concieve go to an OB/GYN for a consult and talk to your GI as well. The two doctors should be able to work together and give you great advice throught the whole process. Best of luck to you! I hope this helps -
Posted 6/11/2010 6:37 PM (GMT 0)
I have did have remission from Sept 2006 thru to Feb 2008...I then flared on and off till Sept 2009 and was ok till this May..So I have had some periods of remission . I have only had this for four years..lets say half the time I have had remission and half not. I had a severe flare once.
I am thinking of Imuran but not jumping at it.
Posted 6/11/2010 6:55 PM (GMT 0)
Krissy that is good - I have never been in remission for more than a month or two at a time. I have also had this for four years and would say I have been in some form of a flare for 85% - 90% of that time - although most of the time it has been mild. Even mild symptoms that are constant can make you nutty though! :) I'll post on here how the Imuran is working for me once I start it. I am really hopefull. My doctor says it is less harmful than taking pred on and off forever. I have read some of the newer studies of Imuran which show not link to increased cancer rates for those being treated for IBD with it...
Posted 6/11/2010 7:44 PM (GMT 0)
why are you waitingtill after your pregnancy? I heard its ok to be on it while pregnant..
another concern I have..I would like to have another child but Im not sure that med would be ok to do so.
Posted 6/14/2010 1:37 PM (GMT 0)
So here I am..the weekend has passed and still not getting better..not much worse but not better either..still going 4-6 times a day , very loose, with blood..etc..the cramping has started to get a little more painful and for some reason when i get these cramps i am feeling nauseous and getting achiness in my legs and ankles..have had the ankle pain before but this is more noticable.
So what to do now? When I finish my vsl I was thinking of buying the Ultimate Flora Critical..but to be honest I am afraid to take something with a much lower bacteria count..I hope I dont get worse...
I switched from Salofalk to Pentasa a couple weeks ago. I started with 8 tablets a day and upped it to 12 just over a week ago. Still no improvement. Before that I was on 9 Salofalk a day and then I had upped to 12 and I actually did see a slight improvement before switching to PEntasa. I am debating whether to go back o SAlofalk. I still have lots of tablets left.
I also have a box of Cortenemas on hold at the pharmacy that I am debating on whether to pick up. I dont want this to linger on as its already been 6 weeksin this small flare. Weight is down to around 105 pounds and Im so tired.

Suggestions?
Posted 6/14/2010 6:20 PM (GMT 0)
bumping for myself..I am really hoping to get some thought on me switching back to salofalk
Posted 6/14/2010 6:42 PM (GMT 0)
i think you should call your gi and see what they want you to do

 

just my thoughts:

 

if you did better on salofalk, then talk to your doc about switching back, if you got worse on pentassa then i would tell your gi

 

i have never never gotten over a flare yet when I wasnt on some type of rectal meds, so those cort enemas you have waiting at the drugstore may help

 

are you having alot of urgency? 

 

also, search these boards for metamucil

 

metamucil absorbs the water in the colon and helps bulk up the stools

 

hope you feel better

 

 

 

Posted 6/14/2010 6:54 PM (GMT 0)
Seems it's worth switching back.....sucks because I was very hopeful it would help for you to at least see some improvement based on its delivery system of time rather than ph. So, that's not the issue.
Unless 5ASA meds are NOT your friend...the fact that you're getting somewhat worse is frustrating to hear.

For sure you're not pregnant? If you're not....Are you expecting your period within the next week?

I know that down the legs period feeling when flaring....horrible.

Before you totally stop the VSL....try cutting it back to maybe half a pack daily. Do it slower.

Are you going to try the cort enemas? Maybe one every second night might help...the other night use the Salofalk.

Which doctor are you seeing at this time.....the butt stretching one or your first one?

q
Posted 6/14/2010 7:16 PM (GMT 0)
It could be helpful and that the flare is just getting worse altogether..so maybe if I switch back to salofalk and things are really bad than maybe thats the case...
I am not pregnant..I think I a ovulating right now cause lots of that gooey stuff at the moment..sorry lol
Posted 6/14/2010 7:27 PM (GMT 0)
Well, hormonal changes at this point, add in the previous emotional distress of the past month or so. I call it the calm after the storm ripple effect.
A new stone has dropped as of today, so the next 10 or so days may be progressively worse.

You're not eating soy are you?

What exactly are the ingredients in the VSL#3?

How much vitamin C are you taking?

It's worth switching....I don't think there are any other options for 5ASA unless you try Asacol...but I think it's pretty much the same as Salofalk with the acrylic casing.

q
Posted 6/14/2010 7:32 PM (GMT 0)
that would be splitting the packs in half or just doing them every other day?

i dont think it would be very easy to gage half the pack...they are in little packets...I dont know if I should try the corts..I dont think anything is going on below..I think I am flaring up top where they cant reach so I am not sure they would help

I am seeing my original GI
Posted 6/14/2010 7:34 PM (GMT 0)
split them as best you can....spill one in a glass and measure how many half teaspoons or whatever measurement would suffice. Then open a pack and spoon that amoount out. I would take half a day rather than every other day.

The reason is to see if you inprove after less amount of VSL.

q
Posted 6/14/2010 7:52 PM (GMT 0)
Ah man, are you serious??? how to other UC woman operate then? is everyone worse after ovulation till their period???? Might as well have stayed on the pill then...
I dont eat soy and I take 1000 mg of C a day.

Im really sick of this..maybeI will just try the cortenemas for a bit and see if they help..I doubt it but maybe..who knows..can I just stop them and go back to salofalk if they dont?
Posted 6/14/2010 7:56 PM (GMT 0)
I dont think I have ever seen an improvement on anything with VSL to be quite honest. I have my bms all written down since Jan. The numbers have not changed..my urgency got better with the enemas. So really VSL may not even be doing anything..but maybe the flare would be worse without it...who knows..
why cant I just switch to another probiotic like the ones you are on?
Posted 6/14/2010 8:00 PM (GMT 0)
LOL....well, I only got one - two really good weeks then periods always upped the hell factor.

You also just got off the pill....lots going on.

I was thinking the vitamin C/diarrhea and soy/hormone connection...but alas, no.

Why not alternate the cort enemas with the Salofalk....

Oh, do you feel like my little experiment? lol.

q
Posted 6/14/2010 8:06 PM (GMT 0)
oh man..this is awful..I totally didnt think about that..I HATE THIS!!

I Am bleeding....I have pain from about the middle of the transverse all the way down the left side..I Am alternating betweed D and semi formed somethings lol ..I am going 4-6 times a day on the dime..today 4 so far.....good times eh..lol

Predisone is so tempting with my weight going down :(

can you do the corts every other day..I dont think so..they are steroids...
Posted 6/14/2010 8:12 PM (GMT 0)
why not? or just try them at night instead of the 5ASA. You can do headstands like others try to get it up higher than the sigmoid. Set up a pair of chains with leather cuffs for your ankles. Won't people be surprised what they're actually used for...lol.

The weight gain from steroids isn't what you'd want anyway.....

Oh....have you figured out how much calories one can burn by worrying.

I dropped weight when I got off the pill.....

Hang tough Krissie....vent away, but try not to be as desparate as you're sounding right not. You won't be able to solve this quickly....

Are you taking any fibre supplements?

Again.....call the doc and ask for Bentylol....I think if it helps with the spasming, that will get your mind off that aspect somewhat.....


q
Posted 6/14/2010 8:31 PM (GMT 0)
Pentasa is really designed to treat the ileum and right colon. If your pain is more in the transverse and upper left, I'd switch to an oral 5ASA that is designed to treat the whole colon or the transverse down. Were you having right sided pain before you started the pentasa?
Posted 6/14/2010 8:34 PM (GMT 0)
Pentasa starts to disperse in the ileum, that's why it's particularly effective for CD in the upper colon and ileum. It continues to disperse throughout the colon and is used for UC no matter how limited.

I use Asacol which starts to disperse in the terminal ileum, but continues throughout the colon...no different. It still reaches the left side.

q
Posted 6/15/2010 2:38 AM (GMT 0)
I really think you ned to find a GI you trust and feel comfortable with. I generally try to take my doctor's advice. She's been doing this for a long time and has worked with a lot of patients. She usually offers good direction. If you don't have a good relationship, maybe you should look for another doctor. It's hard enough to have this condition that responds to what it wants, when it wants but it's even more difficult when we aren't comfortable that our doctor is guiding us in the direction we want to go. 4-6 BMs isn't a ton but it's more than I am comfortable having per day. I wouldn't take prednisone over it but I would definitely be watching carefully because it could turn much worse. I had excruciating pain when I started prednisone. My doctor thought I was borderline a trip to the ER.
✚ New Topic ✚ Reply
1234