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Posted 7/17/2016 5:26 PM (GMT 0)
Hello. Just thought i'd create an account and post for the first time. I've read a lot of information on here and its been helpful and eases my anxiety.

I was diagnosed with UC back in 2002. I am an 42 year old, healthy mom of two very young kids!! :) (4 and 11 months) healthy, happy babies.

My past flares have been usually easy to handle. Salofalk enema for a week or two and they go away. But this latest flare has been brutal. Its been over month. I've never had it this severe, with the urgencies. Never had accidents till now. :( Also the pain. I've never had abdominal pain. What the hell is going on. Maybe its because I have two kids to chase and I'm a bit older? I have no idea. My family Dr. got me in to a GI on very short notice (In my part of Canada that is hard to do). He put me on Prednisone 40mg and I had been taking AMinosal oral for the first time too. Well I was scared to get on the pred. but darn it worked. I was feeling great in a matter of hours.

So after a week of that, we started to taper. On my third week of tapering (just started 4 week on 25mg) the flares came right back. Horrible pain, bloody diarrhea, urgencies etc. Called GI nurse and dr told me to go back to 40mg and i see him on Monday. Yesterday the stomach pain was so bad i went to may walk in clinic and got T3 to make it to Monday. The spasms come and go. Not bad enough for hospital. I hate it there so bad. I go back to GI tomorrow morning. Don't know what to expect. I know stressing about it will make it worse!!!! And we have a ten day camping holiday starting Friday. I will feel awful if we have to cancel. :(

Anyways, this was a long ramble. Thanks for listening.
Posted 7/17/2016 7:13 PM (GMT 0)
Hello and welcome!! Happy you decided to make an account. I am sorry you're struggling. it sounds like you're not really treating the UC as much as it needs.

I haven't heard of AMinosal, but a lot of us take Apriso, Asacol, Lialda... The max dose is 4800mg. I don't know what dose you're taking but taking the maximum dose might help to get you off the prednisone. The goal is to find something other than the prednisone that keeps you stable, then you can discontinue prednisone and continue taking that other med for maintenance and stay healthy for a very long time. I am sure you will find the perfect med for you.

A lot us double up with rectal meds too. Instead of starting and stopping, use them daily, even when you're in good shape, to keep things in good shape. When things were in bad shape, I would use them 2x daily. Enema at night and suppository in the AM. You can also get steroid enemas or supps and sometimes they help more. If you're on te high dose of prednisone for the trip, maybe you will be stable and you can focus on tapering after you return. :)

Actually, Uceris might be a good option for you and the side effects are way less problematic than pred.
Posted 7/17/2016 9:49 PM (GMT 0)
Thanks for the welcome message.
The Aminosal is Salofalk in tablet form. Don't know if that helps. I"m Canadian. So a lot of these meds discussed here are new to me or I don't even know if they are the same or offered here. And yes, I'm bad for stopping the evening medicated enema when I'm "better". I'm going to write these all down and run them past the GI Dr. tomorrow. I don't know what to do. I've just never had so much pain before. :(
I miss coffee too. lol
Posted 7/17/2016 10:18 PM (GMT 0)
hey mom - welcome !

when did you start taking the Aminosal ? just recently ? and before that, no maintenance drug, just treat flares with the enemas ?

and when you have not had flares, did you have any UC symptoms day to day ? or were they completely absent ?

last, how many times has someone, preferably from the medical profession, looked up your heiny since 2002 ?
Posted 7/17/2016 10:43 PM (GMT 0)
Hi,

Sounds very similar to my recent experience in terms of having flares that you can sort out using Salofalk enemas then all of a sudden having one out of the ordinary and needing something stronger.

I have only been on 30mg Pred for four days so can't comment on the taper but i am currently taking Pentasa orally and a Salofalk rectal foam enema before bed. So far the 30mg of pred combined with the Salofalk has really calmed my symptoms down. I am not expert but this may work for you if the salofalk has previously been affective.
Posted 7/18/2016 3:05 AM (GMT 0)

juststud said...
hey mom - welcome !

when did you start taking the Aminosal ? just recently ? and before that, no maintenance drug, just treat flares with the enemas ?

and when you have not had flares, did you have any UC symptoms day to day ? or were they completely absent ?

last, how many times has someone, preferably from the medical profession, looked up your heiny since 2002 ?




Hey there.
Started the Aminosal a few weeks ago. And nope, no maintenance drug at all, could treat the flares with the bedtime enema.

I have had no problems at all, and I have no idea what triggers it. Probably stress... ugh I have a lot of that. Also i had no idea that naproxen/ibuprofen could trigger or worsen the flares. (back pain from postpartum, dental work recently etc. etc)

I have had no scope done since 2002.
Posted 7/18/2016 3:22 AM (GMT 0)
Maintenance medications are the best way to treat ulcerative colitis, a chronic lifelong illness. Uc is an autoimmune disorder where our immune system attacks the lining of our large intestine causing inflammation, ulceration, bleeding, diarrhea, and pain. Our medications don't cure us, but treat only symptoms. The immune attack does not sleep it's continuous. Anti-inflammatory mesalamine (pentasa, lialda, asacol) is a great maintenance medication for many.

Are you seeing a gastroenterologist?
Posted 7/18/2016 3:27 AM (GMT 0)

Prairielilymom said...


" My family Dr. got me in to a GI on very short notice "

Posted 7/18/2016 3:35 AM (GMT 0)
sounds to me like you've been doing very well for the most part - maybe some changes in lifestyle/diet and future avoidance of ibuprofen might be all you need -

it's hard for anyone to say for sure what the future will bring to the table for your dear colon -
Posted 7/18/2016 12:59 PM (GMT 0)
Hi Mom -
Gosh, I am sorry about this current situation you are in!
Your story struck a chord with me; I had UC for at least a decade before I ever had the stomach pain, so I didn't even know what it was!
People have suggested lots of good things. Continuing the Aminosal and Salofalk enemas, also getting some Salofalk suppositories to use in the morning (I would do them after the "morning cluster" of bathroom trips) and maybe seeing if you could start Uceris and taper off the pred (Uceris takes a little time to kick in, in my experience).
I know the best thing for all of us is to get off pred as soon as possible; but if this camping trip is really important, maybe you could just not re-start the pred taper until you get home?

How to judge what is best for us mentally and emotionally (family vacation, time to de-stress, etc) and how that interfaces with our medical regimen is a delicate dance......
Posted 7/18/2016 7:37 PM (GMT 0)
Well saw my GI again this morning. He was concerned about the sudden flare while i am weaning off of Pred. He gave me a prescription for the Imuran/Azothioprine. He gave me the information, and told me not to get scared. lol I have the option of keeping up with the prednisone and starting to taper again next week and continue with the enemas and the oral pills. I am scheduled for a colonoscopy on Aug. 9th. So i can wait it out and see what happens again with the tapering or just fill the script. I guess the Imuran takes time to take effect and he put me on a smaller dose of 50mg. I need to do some reading and research I guess. I hate this not knowing if and when I'll be better again.
Posted 7/18/2016 9:59 PM (GMT 0)
I was on 6mp and never experienced a side effect from it. Side effects are rare.

Immunosupressants: These are the second line treatment for uc which reduce the white blood cell count within the body. White blood cells cause inflammation within the body. 6mp (generic Mercaptopurine) and Imuran (generic Azathioprine) are the most commonly used uc treatments. Immunosurpressants take several months to build up to therapeutic levels within the body. Immunosupressants initially require blood to be monitored weekly. After good results are collected monitoring is often reduced to biweekly, monthly, and finally trimonthly. Blood monitoring includes a CBC to ensure white blood cell does not get too low, a liver panel test monitors liver function and to watch for proteins indicating liver damage might occur. Medication dosage is increased, reduced, or it is discontinued based on test results. While on these medications, one is more prone to infections such as UTIs, bronchitis.

The Crohn's and Colitis Foundation of America has some great information about risks versus benefits:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 7/18/2016 10:53 PM (GMT 0)
Thank you so much!!!!
Posted 7/19/2016 1:51 AM (GMT 0)
So I was diagnosed with several ulcerative Colitis in 2014 during a flare, I was given medication and went into remission. Fast forward to 2016 im having another flare but this time for some reason my symptoms seem to stay the same and not improve. The one main symptom that I'm trying to get rid of is excessive gas my rectum area seems to stay warm all day and I can feel myself releasing gas all the time (morning to night) and I can't seem to be able to control this. As of now I'm taking :entocort ec, uceris, balsalazide, col rite, dicyclomone, simethicone, also rowasa enema, Canasa suppository, cortifoam, beano, charcoal tablets, peppermint tablets, and iron supplement. Along with that main symptom I'm having diarrhea and sometimes it's constipation my bleeding seems to have increased since ive been on medication I can't form a proper stool and I just need to know if anyone else experienced something similar or if I should try something I haven't.
Posted 7/19/2016 2:37 AM (GMT 0)
ItsalwaysChris247:
I'd start a new topic on this if I were you. You may get more views.
Posted 7/20/2016 12:53 PM (GMT 0)
I'm off to hospital. Can't stand the pain anymore and the T 3 aren't ideal with having small children at home. The blood and D are worse the last couple days and I have to quit being stubborn and just go in. :(
Posted 7/20/2016 1:41 PM (GMT 0)
make sure you ask for a stool test - good luck -
Posted 7/20/2016 2:41 PM (GMT 0)
Good luck, I'm sure they'll be able to help with the pains and expedite getting your flare under control. Sometimes we belatedly accept what's necessary...
Posted 7/20/2016 5:23 PM (GMT 0)
Hi..welcome to the forum! Hope that you get results from the hospital. I strongly agree to request stool testing since something else can be going on.

Let us know the outcome and how you're doing.

q
Posted 7/20/2016 5:44 PM (GMT 0)
I had a stool test done a few weeks ago and it was all negative. I'm here at ER and its a waste of time. Getting a bag of fluid, some gravol and a tiny bit of morphine for the first time ever.

"Follow up with my GI. This is the ER, only er doctors here." We will send you home with narcotic tablets... That's what they are telling me. I'm so angry. I guess I was hoping they could do something else to help get this under control..... I keep tru My to tell them that when I go home in just going to be in the bathroom crapting blood and in pain all over again.... I hate our healthcare system up here.
Posted 7/20/2016 5:51 PM (GMT 0)
Where is up here? Sask? What city?

You should still have another test...ask them for a kit to take home to do.
When's your gi appt?

q
Posted 7/20/2016 6:17 PM (GMT 0)
Yes Saskatoon. Colonoscopy is August 8
Posted 7/21/2016 4:54 PM (GMT 0)
Keep us updated on the scope.

Where exactly is the pain you are experiencing? How are you doing today?

q
Posted 7/21/2016 11:39 PM (GMT 0)
Well spent all darn day in ER ugh. Different hospital. Got more blood work done, At least this dr called the GI. They orders a dye catscan. Results are significant inflammation all over. Go figure. But blood was good so I know I'm ok, I'm not dying, nothing toxic. (I always give myself anxiety over the fact that things could be way worse and they will find something worse). My dr honestly said staying In hospital is last resort. He said it's dangerous and full of infections and I agree I want to go home. So we are now going up to 60 mg prednisone, starting the imuran. I was so hesitant to take the morphine but he said I need the pain management and I won't become an addict overnight. (Another thing I'm anxious about).

I go for follow up Monday. Camping trip cancelled.
Posted 7/22/2016 4:13 PM (GMT 0)
So did they do stool samples again?

How are you today?
q
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