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Crohn's Disease Forum » Ulcerative Colitis Forum » First flare.. Advice please!


09-05-2013, 05:36 PM   #1
Chris1
 
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First flare.. Advice please!

Hi everyone!
I was diagnosed with UC (and anaemia) in April and have since completed an 8week course of Prednisolone and am maintaining remission using Asacol (and iron supplements). My IBD nurse told me to not really avoid any foods, but just to continue regular exercise and not drink much alcohol.
A week ago my UC flared up for the first time since diagnosis, resulting in all those horrible symptoms again! I can't think of anything that would have specifically caused it, and it did occur quickly without any warning signs.
As this is my first flare since diagnosis, I feel a bit lost. Does anyone have any advice on what to do from here? Thanks!!
09-05-2013, 09:05 PM   #2
Cross-stitch gal
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Sorry to hear you're not doing well. It's always a challenge, especially if it's a first flare. Here's a few things I'm hoping might help. Please keep us updated on how you're doing. Sending hugs your way.

http://www.ccfa.org/assets/pdfs/flar...hure_final.pdf

http://www.patient.co.uk/health/ulce...olitis-leaflet

http://www.ibdiowa.com/resources/nutrition.html
__________________
Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
09-06-2013, 01:04 PM   #3
Chris1
 
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Thank you Cross-stitch gal, I'll take a look at the links you've posted. I'm considering phoning my IBD nurse this weekend to see what we can do. I'll post an update when I have one!
09-14-2013, 01:38 AM   #4
abic
 
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Hi Chris,

Ringing your IBD nurse seems like a great thing to do- especially if you have blood and cramping. I personally needed to take Azathioprine as I flared like you did after taking steroids and maintainence meds like Asacol. All the best- you will get on top of things soon. It takes time to find the right combo of meds. I am thinking of you!
__________________
Indeterminate IBD- diagnosed July 2012.
Dx changed to Ulcerative colitis Feb 2013.
Endometriosis

Current Meds:
Asacol 3.2 g/day, Azathioprine 100mg/day, Allopurinol 50mg/day (to metobolise AZA correctly).

Past Meds:
Prednisone; Pentasa Enemas
09-14-2013, 01:41 AM   #5
abic
 
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An after thought- one thing I would recommend is the low residue diet if you are having symptoms. Basically- cut the fibre down by cooking veges well and avoiding pips, skins and seeds. Google it- it really has helped me when things get bad, at least to reduce some of the cramping after meals.
09-14-2013, 02:13 AM   #6
LylahJean
 
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I was diagnosed when I was 8, I'm now 23. I remember my first bad flare before I knew anything was wrong, I was 6, and I would always wake up in the middle of the night to make BM and this one time in particular, I remember my stomach was hurting so severe, ad I was so tired and exhausted I actually fell asleep on the toilet, and when I woke up(maybe a half hour later) I looked in the toilet to see if I had pooped and all I could see was red. I couldn't even see the bottom of the toilet it was so much. It was a long few years before I had a flare like that again. When I was 9 I was put on prednisone, 100mg a day for almost 6 months, it was bad. I got fat, I got hairy, and angry and emotional and suicidal and depressed. Then when I was 12, it was pretty much the same, cramps, diarrhea, weight loss and then more prednisone. Only this time the had me start remicade as well, it was miraculous how well that worked for me. I was on it till I was 16 and then I chose an alternative route for a girl who said homeopathic mess could cure me. When I was 17, I almost died. I went from 165 pounds to 104 pounds in 3 months. So, back on prednisone now, at 23 I'm on just remicade and I'm looking for other options. It's not doing its job the way it used to and last time I got it I developed a fever during the infusion. I go in tomorrow morning for another infusion and hopefully a discussion with the GI about some alternatives.
09-15-2013, 11:51 AM   #7
HotRodCA
 
Join Date: Sep 2013
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I have been dealing with flare ups more in my disease than remission it seems.In the early days i tried to figure out what was causing me to flare,but just made me crazy..abic is right i also do low residue during a flare and it did take time for me to figure out what my colitis responds to. hang in there your not alone ...look forward to hearing about your progress
09-18-2013, 05:47 PM   #8
Chris1
 
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Wow! Thanks for the support and advice guys! My IBD nurse says that I need a chickenpox vaccine before azathioprine treatment can begin, I had my first injection last week and will have the next one in three weeks; I then need to have a blood test a month afterwards to check for immunity and anaemia! So it doesn't look like anymore treatment will be happening for about 2 months… For now I may read up on the low-residue diet and see if that helps me.

Abic - I think I'll be taking a similar route to you and taking Azathioprine soon. My IBD nurse says I need a chicken-pox vaccine first though. So Azathioprine treatment can't begin for at least 2 months! I feel a bit stuck.

LylahJean - Thank you for sharing your story with me. I can empathise with those terrible stomach pains and exhaustion. How are things going for you now? I assume you've had another infusion and discussion with your GI? I hope things work out well for you!

HotRodCA - I too have been trying to figure out what foods and things make my situation worse or better, but I've not have much luck! I'm sure that lack of sleep and stress makes things far worse, but I can't figure out what can make my symptoms better! Typical! I can't really figure out what's even started my flare - I've done nothing unusual!
09-18-2013, 06:22 PM   #9
nitty
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Hi!

It's well worth keeping a food/stool diary. I did this for over a year and it really helped me to notice patterns that I wouldn't have seen otherwise. It may seem like a faff, but it can really help.

Just take a few moments at the end of each day to make a note of the following:

What you've eaten/drunk that day and how much
Stools - how many/consistency (yep!)/any blood or mucous or pain - maybe make up a key for this if you feel embarrassed about writing it down (I even made a graph at one point!).
How you felt that day - mood as well as any physical pain, wind, etc.

Doing this has also helped me to see the effects of any medications. No matter how much you think you'll remember about what happened when, you never quite remember it all enough to recognise patterns of cause/effect. It could even be useful evidence to show to your doctor if needed.

Good luck!
09-26-2013, 02:21 PM   #10
Chris1
 
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Thank you nitty, I'm going to start keeping a diary now.

I've got a few updates to share as I had an appointment with my IBD nurse; there was a lot of take in and understand for me, so I'll try to bullet-point it.

• After I had my colonoscopy/diagnosis in April, my IBD nurse only saw the notes of the doctors/nurses who carried out the colonoscopy - she didn't see (and still hasn't seen) the results of the biopsies that they took, so she is still waiting to see them!
• Rereading the notes again, my IBD nurse became confused that my anus and rectum were both free from IBD symptoms/ulcers, but my Ileum was not… She told me that characteristically UC starts from 'the bottom up' was 'Crohns' in the bowel area tends to start the opposite… So from the notes it looks more like I have Crohns now… We're waiting for biopsies notes to come through for confirmation.
• I explained I get pain typically before I run to the loo, so I now have Pentasa suppositories (1 in the morning) and Salofak enemas (1 in the evening) to administer. I've also had to increase my Oral asacol dose to 5 in the morning and 5 in the evening.
• I had a blood test taken to check for anaemia etc
• I had a chest X-Ray to check for something to do with TB (confused me a little but I went along with it… It had something to do with a possible infection that could have caused the flare-up).
• I've also lost half a stone, which puts me at 19 on the BMI scale, which suggests I may not be absorbing nutrients in my small bowel much (supporting the plausible Crohns diagnosis)

Things that will happen soon:
• I *should* find out whether I have UC or Crohns
• Meeting with a nutritionist
• Sigmoid colonoscopy
• A test that involves florescent liquid to check my small intestine for inflammation (forgot the name of the test)
• Final Varicella vaccination shot

After all that is done I should hopefully be getting more medication; I'm beginning to worry, as I have type 7 diarrhoea and am seeing an increasing amount of blood; it seems I also don't really have any medicine to stop it.

Sorry it's a huge post guys but I thought I'd keep you updated, and as I say I'm beginning to worry.

PS: I keep hearing a lot of rumbly noises from somewhere inside of me and a lot of noises of liquid… Is that a symptom of something?
11-14-2013, 11:12 AM   #11
Will1991
 
Join Date: Nov 2013
Hi Chris,

I'm currently in my first flare up.

I got diagnosed with UC about 6 months ago and am currently on:
-Prednisone (down to 2 tablets a day, was on 8)
-Asacol (3 tablets a day - 800mg overall)
-Asacol meselazine foam - every other day
- Azathioprine 150mg everyday

I've been on the Azathioprine for about 4 weeks but been told they take about 8 weeks to kick in....

Fingers crossed!

Anyone similar to me?

Will
11-14-2013, 11:48 AM   #12
Chris1
 
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Hi Will,

That's interesting actually, because those medicines are the ones that I've been on too. Well, I've just started the Azathioprine 100mg for the first time a week ago.

Have you had a flu shot this year yet? My doctor recommended that I get one because of the Azathioprine lowering my immune system. I had the shot done and haven't felt worse at all because of it, so it was a good decision for me I think.

Chris
11-14-2013, 12:12 PM   #13
FrancisK7
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Hi everyone!
I was diagnosed with UC (and anaemia) in April and have since completed an 8week course of Prednisolone and am maintaining remission using Asacol (and iron supplements). My IBD nurse told me to not really avoid any foods, but just to continue regular exercise and not drink much alcohol.
A week ago my UC flared up for the first time since diagnosis, resulting in all those horrible symptoms again! I can't think of anything that would have specifically caused it, and it did occur quickly without any warning signs.
As this is my first flare since diagnosis, I feel a bit lost. Does anyone have any advice on what to do from here? Thanks!!
Dear Chris,

So sorry to hear about your flare. It's never good news, but you found a great support group and it looks like you have a communicative GI and nurse so you seem to be in good hands already.

Prednisone is very effective at treating inflammatory symptoms but it is so damaging over long-term use that it is no longer prescribed for chronic treatments. It's administered as a band-aid in times of acute or aggressive flare. It's standard to prescribe something else alongside the steroids to maintain remission afterwards. In your case, the Asacol did not work. It happens. I tired three types of 5ASA myself and none worked.

Your TB test is make sure you don't have it as Aza modulates the immune system responses and could make you vulnerable to the disease.

Aza worked great for me and after a month of taking it saw the first signs of notable improvements. Unfortunately I developed pancreatitis, one of its (rare) side effect, so had to stop that too.

While you're taking Aza there won't be much to help you in the short term unless you go back on pred again, or try another 5ASA. I see you were prescribed suppositories, these should reduce the symptoms locally at the very least.

Whether you have UC or Crohn's isn't that much of a deal since both pathologies are nearly identical as symptoms are concerned. It is important to know for the treatment however, and your options, so that's coming.

While the Aza does its thing there are things you can do to help reduce symptons and pain.

Food- certain foods are more difficult for the body to digest. It mostly has to do with the chemical complexity of the food you're digesting. Whole grains, raw vegetables or fruits and fibers require extra effort. Other molecules like lactose or gluten can irritate the bowel on their own by inducing an allergic response. If you avoid those stressers, it can give your intestine a break and reduce the amount of inflammation in there, thus the pain and other symptoms.

Cannabis- there's a lot of propaganda and stigma working against this plant but the molecules it produces, cannabinoids, are nothing short of amazing, and the biochemist in me is hardly able to believe the science on this. The clinical trial results are starting to come out and what has been suspected for a long time has been confirmed both in humans and in-vitro as well, in a controlled and verifiable environment. Cannabis is powerful enough to induce remission in large doses and apt enough to treat all associated symptoms in small doses. It comes at a cost of temporary reduction in your short term memory performance, can impact your motivation, makes your eyes red and mouth dry. The biggest unwanted side effect for some is the high, which can be eliminated or mitigated.

Stress- avoid it as much as possible, and when you do have to deal with it, think of stress as a positive thing in your life. It may change your physiological response to the perceived pressure. I offer you this TED talk from neuroscientisit Kelly McGonigal on the topic: http://www.ted.com/talks/kelly_mcgon...ur_friend.html

Sleep- Get at least 8h of it a day. Our bodies need that time to regenerate and heal even on a cellular level.

Good luck!
11-15-2013, 03:43 AM   #14
Will1991
 
Join Date: Nov 2013
Chris,

Really? My gastroenterologist didn't mention anything about a flu jab... I'm pretty healthy and only 22 so hopefully I'm alright, I will look into this though.

So yea I got told to just week by week gradually come down on the pred, I'm currently on 2 a day bit might go back up to 3 as it got a little worst today (saying that I did have a heavy night last night, I tried wine tasting out for the first time... Ha).

I'm just hoping the Aza starts kicking in soon as I really just want this first flare to go down. I was told that the first flare is always the worst.... It's just finding a med your body can work well with.

Francis that was a useful post. Thats a shame the Aza have you that side effect, you said you noticed it working on you though right?

I'm just hoping it does so I can come off the pred, as we all know pred is a short term fix for aggressive flare ups.

Will
11-15-2013, 04:51 AM   #15
Chris1
 
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Francis - Thank you for your advice! In particular, I really should start thinking more about the food that I eat. At the moment my dietician is recommending me to pack lots of calories in (healthily of course) to boost my weight up again since my flair.

Stress and sleep are such important factors too as you say - I find that they have a huge effect on me. Last night I watched that TED talk you recommended, which has definitely given me something to think about. Hopefully I can work it into my mindset.

Will - I hope the Aza starts kicking in for you soon so you can find some relief! I'm the same age as you, so maybe it is just worth asking a doc whether you should have the flu shot. As you say, you'll probably be alright without it because you're young!

Have you considered altering your diet/food at all? You mentioned the reaction you had to the wine tasting - My Crohns isn't great with alcohol either!
11-15-2013, 06:56 PM   #16
Will1991
 
Join Date: Nov 2013
Chris,

Thanks, I'll keep you updated. It feels good to talk to someone who's the same age dealing with a similar problem.. When did you say you were diagnosed?

I haven't actually looked into the diet at all...any tips would be greatly appreciated. As you will know this first flare is a nightmare to down!

Yea it's usually the morning after with drink, but this is only because alcohol in General makes you want to use the toilet.... I find getting drunk helps me relax and escape a bit you know.

So also I've been told cannabis helps... Strange!

Where is everybody from on this post btw? I'm from the UK.
11-19-2013, 12:58 PM   #17
Chris1
 
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I was diagnosed in April this year, but was suffering with symptoms since April 2012. My diagnosis got changed from UC to Crohns in September 2013 too.
I'm from Southampton UK. How about you?

Also, I've never actually tried Cannabis, so I can't really vouch for it's effectiveness.
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