Quick question

[Sascot]

This is probably going to sound silly, but we have our IBD clinic on Wednesday with the paediatrician, GI, GI nurses and community nurses. I am assuming they will be wanting to just check Andrew's progress on the Azathioprine.
Here's my question - how do I know if the medicine is actually doing any good? Apart from the abcess/fistula (which may or may not go away with the Aza), he had no other symptoms before starting it. No constipation/diarhea, no tummy pains - his blood tests were fine apart from iron, his faecal calprotecton had come right down even before he started Aza.
I find it hard enough to justify him taking it without actually having some physical evidence that it's doing him any good. The abcess/fistula is still draining yellow "stuff" every day and doesn't seem much less than before.

 

[crohnsinct]

Hmmm puzzling. I have no experience with fistulas and abcesses so can't offer much advice. Only lots of good wishes from across the pond.

 

[skippy111]

The Dr should have told you why he was prescribing the Aza so you would know..

I question everything.
I would want to know what each med is supposed to treat, why it is being prescribed and what side effects should i be on alert for...

the danger in not asking so many questions is that some dr's will prescribe what is new just because it is new.. My Psych dr tried to have me try a new med once.. I did, and it was a nightmare... never again, im no guinea pig.

 

[DustyKat]

Hey Sascot,

Fistula/abscess aside, if he responded to positively to treatment prior to commencing the Aza then I assume they may have been looking to Aza as being maintenance medication. So treat the initial inflammation quick and then have the Aza take over. That being the case you would have to look to symptoms and clinical indicators as markers that it is working. If symptoms are absent and bloods are normal then you would have to say it is working as it is maintaining the status quo.

Good luck with the appointment!

Dusty. xxx

 

[Farmwife]

I hope the appointment goes well.

Farmwife

 

[Twiggy930]

Hey Sascot,

My son has been on Azathioprine for four months now and the improvement for him has been SLOW. Having said that he did have a perianal abscess at diagnosis, in early February, and it has now disappeared. Our GI claims that this was due to the azathioprine, but he was also on Flagyl, Cipro, and Pred at the time so who knows. I feel like I am still seeing SLOW improvement on the azathioprine but it is SLOW. Hope your appointment goes well on Wednesday.

 

[LilyRose]

Let us know how you go with your appointment. My son has perianal issues, his abscess/fistula has healed now and it was really slow. So I know how hard these things are.

I would probably go in to the appointment and ask those questions you asked here. They should be clear about what their treatment aims are, and how they are monitioring for effectiveness and side effects.

I write my questions down and check my paper before I leave the consulting room. I also take a friend with me if i'm not with my husband.

Hopefully your appointment will be helpful and the doctors will be informatative.

Best wishes,
Lily Rose

 

[Suzysu]

I hope all goes well with his appointment - good luck xxxx

 

[Tesscorm]

I hope you can get some reassurance at your apptmt tomorrow. Unfortunately, it seems that with maintenance medication, simply the lack of symptoms (including test results) must be seen as the confirmation that the medication is working.

But, without definitive and visual evidence of what that specific medication is doing, I can certainly imagine how tempting it would be to question if he really needs it, if it's really doing anything, how would he be without it??? I know that, when the time comes, it will be a daily struggle for me... to give Stephen medication when he's looking and feeling good. :voodoo:

Some questions you could ask would be what are specific risks if you were to discontinue the medication, what complications might arise, what signs could you look for and would they be early and quick signs that the disease is beginning to worsen, and what might be the difficulties in trying to regain control of the disease??? I know there won't be any black and white answers but even the 'grey' answers may give you some reassurance of the necessity of continuing with the maintenance med. (Or even, and I'm not encouraging this!, if discontinuing in the future is an option to consider???)

Good luck! :ghug:

 

[Sascot]

Thanks guys, hoping to be in and out fairly quickly (that would sound worse if I was a guy :blush. The Olympic torch is coming through our town tomorrow afternoon, so Andrew is walking with the whole high school to go and see it go past. He would not be amused if we got held up at the hospital and missed it!!

 

[my little penguin]

good luck in the am

 

[crohnsinct]

Sascot: hoping all goes well tomorrow and that the IBD gang and I mean gang (geez there are enough of them huh?) understand the importance of getting him out of there in time to see the torch...soooo exciting!

 

[Suzysu]

GOOD LUCK!! thinking of you xxxx

 

[Sascot]

Well, appointment went fine - we were out the hospital by 10.40am. They are happy with the abcess and we are finally able to give up the dressing changes and move on to the medical honey which we can do at home!!!
I tried to explain my concerns about the meds but they just smiled condescendingly and said it is important he takes it. Seems a bit weird they plan to keep him on it for at least 2 years then will be re-scoped/MRI, etc. If everything ok, then they will take him off it. Yes, completely - nothing to take at all. Oh well, I bow to the "higher powers" just now but will fight for him if anything bad happens.

 

[Suzysu]

:dance::dance::dance::dance:
Hi!
Im so pleased that it all went well - and relieved that you managed to get out of the hospital in time for the olympic torch!!
I do wish some Dr's would just stop treating us like total morons and explain why they do things - then we wouldn't worry about everything so much, and would'nt look things up on the net and scare ourselves half to death - but then I suppose we wouldn't meet all the amazing people that are on forums like this!
But it really is so wonderful for you guys that they are pleased with him - and Yay! for medical honey - it truley is wonderful stuff!!
:hug:

 

[crohnsinct]

Well that sounds good. I know what you are saying about wishing you understood why he had to be on it but two years and then nothing????Sounds like a good deal.

How was the torch...so jealous!

What is medicinal honey?

 

[Tesscorm]

I'm glad all went well!

I've read of some members who do take meds for a while and then go off them??? There was a recently new member, I'm not sure of his name, may have been Robert, who said he had taken meds for a couple of years after diagnosis, was taken off or just stopped and had been in remission for 13 years. Just had a flare and joined... And there's another mom here (forgot who :blush who also mentioned her daughter's GI had a similar plan. I'm curious, too, how they determine when to discontinue and why? But, regardless, you've got a plan for now and he's doing well!! :banana:

 

[jmckinley]

Glad things are going well. I was the same way when R was doing well on 6mp. I hated giving it to him but also hated the thought of bringing on a flare because we stopped taking it. We are still on prilosec after 3 years and every time I ask to get off of it, I get dismissed. Grrrr.......!

 

[Catherine]

Sarah gi has a plan for her stop all meds if she stay in remission for 2 year. The reason given was there is small percent of crohn's patients who have only one flare. If they don't stop all meds you have no way of knowing if you are in that group. Also sarah crohn is mild to moderate.

 

[Sascot]

I suppose the question always is in the back of our minds when the kids do well - could they come off meds and still be ok! We are going to be increasing Aza on Monday to 75mg a day - does that sound like a reasonable strength. Find it hard to just take their word for it (me with a mom's "medical" degree :ysmile!
Chronsinct - the honey is "medical manuka honey" which is being widely used over here just now for helping wounds to heal as it has very good antibacterial and anti-inflammatory properties.
We all managed to see the Olympic torch! We waited in the same area for nearly 2 hours and the guy with the torch jogged past in about 30 seconds :yrolleyes:.

 

[crohnsinct]

Oh YIPPEE! b I just bought some manuka honey yesterday. Taking it myself mixed with water and apple cider vinegar...supposedly a magical concoction...I have candida issues.

My oldest daughter used it on her acne last night. No amazing result slike others have said but we'll see.

I plan to have O take some as soon as she transitions enough off exclusive EN.

You guys are always so ahead if the times...I am jealous!

 

[Catherine]

Sarah going up to 100mg aza she 58 kg. gi said something about 2 per kg.

 

[Twiggy930]

My son is on 75 mg and he weighs about 80 lbs.

 

[momoftwinboys]

My son is also 80 lbs. started at 75mg in October. Upped to 100mg in May after blood test showed he was below therapeutic level of 240-400.:ywow::ywow:

 

[DustyKat]

The weight based dosing of Aza is normally calculated at 2-2.5mg per kilo of body weight.

Over time I have read conflicting reports about Aza/6MP as maintenance therapy. Some say there is no or little evidence that taking beyond two years yields different results to those who stopped taking it. Others however support the notion that it is beneficial to the use the drug long term to maintain remission. The book I am currently reading, Advanced Therapy In Inflammatory Bowel Disease, recommends the use of Aza/6MP long term.

@crohnsinct, there are different grades of Manuka Honey and I would say the one that Sascot is referring to is the one that has been developed specifically for wounds, it is not for oral ingestion. Maybe the wound honey would work better for acne?

Dusty. xxx

 

[crohnsinct]

Darn it! I was under the impression as long as it was above a 10 it was good...any ideas on what that medicinal rating might be. I have a 16 and it is yummy...sure hope thats not the one I shouldn't be eating:hallo3:

I had to search high and low for anything above a 10 so I am willing to bet we can't get the medicinal grade here in the states...conspiracy! :shifty:

 

[Suzysu]

crohnsinct Im sure you could get it - but it probably isn't on the general shelves - you may need to ask the pharmacist as it may be behind the counter or they may have to order it in? - or try the net!!

 

[Sascot]

Chronsinct - in our health food stores we can buy manuka honey in all strengths. However I found a medicinal manuka honey on a different shelf under creams for first aid.

 

[DustyKat]

You would be able to get it in the states crohnsinct. As Sascot has suggested look in the wound supplies section at the pharmacy. If you can't find it there you can get it on the net.

Two brands that I know of are Activon Medical Honey and Medihoney.

Dusty. xxx

 

[crohnsinct]

Wow thanks. I guess because I didn't know there was a medicinal strength I wasn't asking for the right stuff and since thhe staff member didn't ask me what I wanted it for they wouldn't have known to point me in another direction.grrrr:ymad:

Sure hope I find it...would be great to clear up that acne before she starts college...and my eczema...and O's eczema...and...........

 

[crohnsinct]

O.K. so turns out the 16 on my way overpriced manuka honey is not the UMF rating that is so important for the honey to be beneficial:ybatty:.

I have called and gone everywhere and can not find 10+UMF maunka honey anywhere. I must order it online and so I shall. Further, found out that as long as the honey is 10+ it is considered beneficial for medicinal purposes BUT they sell the "medicinal honey" for wound care because it is sterilized and the other isn't. I can not find medicinal honey anywhere except the internet either BUT found a cute little mom and pop independent pharmacy that is willing to order it for me from Medihoney and it will be here Monday...way quicker than I could have gotten it.

So I decided to play nice nice with the pharmacist/owner (which Farmwife will tell you is very hard for me to do but since I now live very unhappily in the suburbs I guess I have to go along) and chat him up. Turns out they are a compounding pharmacy AND do provide LDN. So I got my new friends business card and will add it to my 2 foot think IBD file of resources and told him I hope to see more of him in the future...for some reason he didn't seem as hopeful:ylol2:

 

[Farmwife]

See, once you get further and further away form the city,:voodoo:
you will get nicer and nice. :kiss:
Then before you know it you will actual smile.
Welcome to my world. Give me a hug!:hug:
Farmwife:tongue:

I'm glad you found a place.

 

[crohnsinct]

Yeah watch your pockets while we are hugging!

 

[Sascot]

Wow, welldone for chatting up the pharmacist! What a lovely coincidence they do the LDN, must be meant :ysmile:.
Well, it is late and I should be in my bed but I am back trawling the internet trying to find answers for my daughter. I am so mentally exhausted. She is in alot of pain "in her bottom" again so is miserable and struggling to sleep and go to school. I just don't know what it could be, whether it is a bowel problem, muscle spasms (although it's there all the time - not crampy), nerve irritation or some random thing I can't think of :voodoo::voodoo::voodoo::voodoo:
There that's a bit better. Just want answers and for my poor girl not to be in pain.

 

[Farmwife]

Sorry to here that. Can you call the GI and ask what it could be?
So tough to watch. That's interesting it's there all the time.
Poor girl and poor you. Hugs coming from a farm in the USA.:hug:

Farmwife

 

[my little penguin]

:voodoo:WE have that here- if you figure out a soln a let me know.

 

[crohnsinct]

Really?! What a pain in the bleeep! Literally! I am so sorry girls. I am of no help but I will pray for answers for you both soon!

Getting to bed?! Haha my husband just asked me last night why I never get to bed on time anymore...um duh...researching, obsessing, second guessing...that is my manic life now. Glad to have a community that understands!