Flaring - what is it?

[Jodi]

Hi. My husband was diagnosed with Crohn's in 2004. He had a ileum resection (I think that is what it is called) in 2007. He has been "ok" since then but suffers from chronic fatigue and severe joint pain. He still has very real toilet problems with both frequency and lack of warning as well as cramping. I have finally got him back to the dr hoping to get some relief for the joint pain. Everyone on here mentions "flaring" as did his dr. What exactly is that? He has bad periods and good periods but hasn't had the same pain that put him in hospital. So are "flares" different for different people? Could that be his "bad" days? I'm so confused. By the way we are both 39. Thanks heaps

 

[PsychoJane]

Hello Jodi,
Flaring is pretty much when the disease is active. We have period during which we are symptoms free. Some people manage to have remission without meds (but this is rare), most of us take medication to induce remission and maintain it as long as possible and avoid flares. When flaring it is important to consider diet changes, lifestyle (the body needs some rest from all the inflammation and potential malabsorption of nutriments) and proper medication to reduce the inflammation.

Everyone flares are pretty much different, as crohn has that particularity that it can affect the digestive track from the mouth to the anus. Therefore, the inflammation site varies from one to the other. Some has it principally in the colon, others have major involvement of the ileum, while others may have stomatitis and another gastric or oesophagus involvement. It can be a mix of all that.

Some people will have extra-intestinal manifestations: like the joint pain, some will have fever, some will be exhausted, others can have eyes or skin problems. It is really differs from one another.

I hope this help you a bit, if you have more questions, it's sure someone try to bring some answers to help you

 

[kenyasolovely]

Yes, a person can have good and bad days during flares.

 

[Jennifer]

And they can have severe to mild flares. Just like everyone is different, every flare is different.

 

[DustyKat]

Hi Jodie,

Just a few questions...

What medications does your husband take for his Crohn's?

Is he taking anything to treat his chronic diarrhoea, like Quetsran?

Is he taking any supplements like B12 injections?

Has he had bloods done for B12, Folate, Iron Stores and Vitamin D recently?

Sorry for all the questions! :eek2:

Dusty. xxx

 

[crazycanuck]

Everybody covered that pretty well already but yes a flare is basically anytime where you have a prolonged period of time where the symptoms are worse than what is normal. Sometimes the symptoms are so severe they require ER trips and sometimes they are as "mild" as some extra trips to the bathroom daily but as Crabby said it's always different.

 

[Jodi]

Hi All, thanks so much for your replies.

Crazycanuck, you definately helped by saying flares can be severe or "mild".

Hey Dusty, Phil is not on anything currently???? After his op he was really well and the specialist took him off everything over time. He had been on Pentaza, Azothiprine (I think) and prednisone. He is the sort of guy who just copes and it has been hard to get him to realise there may be a better way of living. He is a really hard worker and great dad, I think he doesn't want to be "sick" so ignores it.

Over the last week I decided enough was enough and now we are researching and he has been back to his GP. We are in New Zealand so some of the brand names are different here. I guess he has been lucky with his symptoms up til now. Anyway he had blood tests done and will get results on Friday. It is obvious he will need Vit B12. I will ask about the equivalent of Quetsran, although I read your daughter had success with "something" husks (will need to find the name). I will keep you posted with the results from Friday and let you know what is prescribed.

He is way to young to just "put up" with this. He is going to read the forum over the next couple of days and I know it will help for him to realise he isn't alone.

Thanks heaps, Jodi

 

[DustyKat]

Hey Jodi,

Good to hear that you got the ball rolling, good for you!

Just be sure that have also tested for Folate, Iron Stores and Vitamin D on top of the B12. They aren't routine tests and generally have to be asked for unless the doc is really on top of things.

It certainly is difficult to know what is right Jodie. Speaking generally, surgeons tend to operate and then say the Crohn's is gone you don't need medication now, some gastroenterologists like you to remain on some sort of maintenance medication whereas others cease them. It's no wonder people are confused!

Questran's generic name is Cholestyramine. Yes, Sarah uses psyllium husks and you can get them in the health food section at the supermarket. They are basically the what Metamucil is made of but she finds the natural husks don't give her the cramping and bloating that the more commercial products do.

Good luck and I hope hubby is able to get some solid answers and relief soon!

Dusty. xxx

 

[Jodi]

Hi Dusty,

Thanks for your reply, my list of questions for the Dr on Friday is getting longer

Saw you are in NSW. That's like finding a friendly face at the bottom of the world, when everyone else is "north". We lived in Jervis Bay (South of Sydney) for a year. Phil was posted there for work. I can think of nowhere better to be sent to work. Can't wait to go back.

Sarah & Matt are really blessed to have a mum who has put so much effort in to making sure they are doing ok. Teenage years are hard enough without Crohn's added in.

Take care and I'll be in touch soon.

"thank you"

Jodi

 

[Jennifer]

If you and your husband get a chance this thread http://www.crohnsforum.com/showthread.php?t=29390 is a good one to read as it talks about those times we decide to go medicine free and what the consequences could be (not to scare anybody but its just part of having IBD).

 

[Jodi]

Hi Crabby,

Thanks for that. I don't think we actually decided to go medicine free. More we were very naive and didn't really understand what a chronic disease Crohn's is. Phil had the resection, put on weight, had energy and not so much pain so when the specialist said "oh you can come off your meds now" we didn't question it. Now, like at the beginning the regression has been slow and I guess we have just worked around the symptoms saying "oh that will be the Crohn's"

I see some of the posters on here have had dreadful symptoms and ongoing problems even after surgery. It seems weird that we just carried on. Partly that must be that Phil has been lucky with the severity of his Crohn's and partly it is because he is scared.

Anyhow I don't think we will be looking at medicine free. My aim is to research, research and then research some more. Ask you guys heaps of questions and find a maintenance programme that works for him. I miss my relaxed, fun loving man, but I am looking forward to where we go from here.

The other thing is we live in a small town in NZ. We don't always have a resident specialist. Quite often it is locums who come in and do a batch of appointments. Continuity of care is definately a problem, and I know Phil got sick of explaining the same stuff over and over. So I'm going to start writing it all down for him - good idea?

Sorry for the long posts. We have struggled with this for a while and it's nice to have other people know exactly what we are talking about.

Thanks
J

 

[DustyKat]

Hey Jodie,

I'm in north west NSW but grew up in Sydney and know Jervis Bay well!

Is it possible for him to have a gastroenterologist in a larger town or city and keep contact via phone and the GP? That is what we do here and it works well.

Yes! Writing it down is a good idea, have a look at the diary we have in the wiki for ideas...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Dusty.

 

[Jodi]

Hi Dusty

Good idea, I know he had one specialist he really liked. She moved to a permanent position up North but at the time we contemplated travelling to see her. This time round we are prepared to be way more proactive !!

Looking at the diary now and will let you know the blood results.

Take care and have a good weekend

J

 

[Jennifer]

My specialist was 4 hours away when I was first diagnosed and some people on here travel further than that (one even went from India to the United States for treatment but I know we aren't all capable of that). Get copies of your test results and blood work so you can show them to any doctor.

 

[Jodi]

Hi Dusty & Crabby

Phils test results all came back fine????? Neither he or the Dr can figure it out. No low levels of anything and even the results for arthritis were clear. Although as Phil said, in the years leading up to his diagnosis the blood tests were always good, it was only when they used the camera they found the Crohns. Odd huh?

But - his GP put him on prednisone last Monday: 40mg per day. Increased to 60mg for two days over the weekend (like a spike dose). Come Saturday, Phil had no joint pain in the morning and only a little in the evening. Normally by evening he is in agony. Sunday he was like the energiser bunny (not sure if you have those adds). He just felt great and was running around doing chores etc. He is a little swollen but not too bad. Phil said that he hadn't felt this well since prior to buying our business. So that would be late 2006???????

He is back to see the GP on Friday for followup and has an urgent referral to the spec. The spec seemed to think that would come through before Xmas. He is also on Omeprazole, not sure what that is doing.

I am planning on ignoring the bloods and getting some Vit D and B12 into him (plus whatever else I can convince him is a good idea - any suggestions?).

The GP didn't agree with Questran? But there is a chance that there was a communication breakdown (I wasn't at the appointment). Won't matter cause we can buy the husks anyway.

The weekend was so much fun for all of us, Phil wasn't in pain and was laughing and mucking around.

Looking forward to your comments

J

 

[Jodi]

Oh and Crabby,

Will definately get copies of everything from now on. I'm going to go to the specialists appointment. We can't remember so many things from the initial diagnosis. I will ask questions and write notes so we are sorted going forward.

And then I can answer your questions as if I know what I'm talking about

J

 

[DustyKat]

Hey Jodie,

Thanks for the update and it's so fab to hear that Phil is getting some fast relief! YAY!

Quite a few people get the whizzes with Pred! and get their energy back fast. Some doctors do prescribe drugs like Omeprazole along with Pred as it can cause gastric upset.
Perhaps the doc thought the diarrhoea was a recent development, related to the flare, and therefore the Pred will take care of it??

My daughter always had normal bloods and tests in the lead up to her diagnosis too, much like your husband. My children are chalk and cheese like that...Sarah had all the physical symptoms but the bloods showed nothing. Matt on the other hand has very few physical symptoms but his bloods show everything. So when it comes to Sarah I go by what is in front of me and gauge how she is going based on that.

Good luck! and I hope the good times continue!

Dusty. xxx