Update on Dusty's Matt

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Thanks a bunch Dusty ~ I thought it was D3 but I wasn't positive.
Do you think I should start him with more than 2000 iu at first ?

MLP thank you for the link ~ I will read it for sure :)
 
I think David may recommend more than 2000iu straight up but I would like his opinion on the results.

Dusty. xxx
 
The only thing on Alex' bloodwork that consistently is low is his Vitamin D level - his is 11 :yrolleyes: He was on Vitamin D supplements is 50,000mg (one pill) per week. Interestingly enough both my Mum and stepDad take the same dose (prescribed by a different doctor - non-Crohn's related).

His B12 was also over 1,000 - but the doctor wasn't overly concerned about it.
 
Crohn's Mom said:
Thanks a bunch Dusty ~ I thought it was D3 but I wasn't positive.
Do you think I should start him with more than 2000 iu at first ?
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You could start him at 2000iu if you want to be conservative. But then get him retested in 4 weeks. If it was me, I'd probably be looking at 4000iu. Or, if they're not on a thiopurine, 2000 and more time in the sun with trunk exposed.

Note that there are vitamin D cofactors including zinc and magnesium that Crohnies are commonly deficient in that are required for vitamin D to function properly.
 
Thanks David
He's not on a thiouprine, hes only on human growth hormone injections and omeprazole right now, so I think ill start with the 2000iu.
 
Dusty, I thought of you and Matt this evening.

If I recall, Matt is supplementing zinc due to deficiency. Well, it turns out that nickel can interfere with zinc absorption and too much nickel is VERY bad. Give this thread a read.

Is Matt taking in too much Nickel? I don't know. But I think it's a possibility.
 
Thanks David. :)

I have had a quick browse, time is my enemy at present :voodoo:, and nothing jumps out at me but I will reserve my opinion to when I can give the topic and question the time it deserves.

Dusty. :Flower:
 
I haven't forgotten David! I am still ingesting the info. :)

Update:

Matt saw the general surgeon today. He was a very nice chap and was happy to answer all our/my questions...:biggrin:...and explained everything to Matt about the op.

He had no trouble feeling the hernia, due to Matt's lean frame, but it is still small in size so doesn't feel the procedure is urgent. I think we will go private so Matt can decide to have the op at a time that suits him.

The surgeon said it should be very straightforward. It will be day surgery with only a small incision required and if all goes according to plan the procedure itself should only take about 20 minutes. He will only be in for another couple of hours after that. He will be given antibiotics during the procedure and one dose after.

He won't be able to drive for about two weeks and then just go back to doing normal activities as he feels he is able.

It will be up to Matt to decide if he has the op next semester when his workload is much reduced, compared to now, or wait until after both the completion of the soccer season in September and the finish of uni in October.

Matt was actually quite animated and interactive today which was good to see.

Best response of the day (is it any wonder I accompany him :lol:):

Surgeon - Where did you have the resection done?

Matt - Sydney.

Surgeon - Which hospital?

Matt - I dunno, somewhere in Sydney. (He was only there a total of 5 weeks as an inpatient, not to mention outpatient visits!)

So all in all a good appointment. :thumleft::thumleft::thumleft:

Dusty. :Flower:
 
Glad the appointment went well. Plus I had a good laugh reading the posts afterwards - thanks for that!
 
Well today was the appointment with the new GI. I am pleased to say all went well and he is very approachable and friendly and he has given us his mobile number and email address. The consultation lasted about 45 minutes. I would put the GI in his early thirties which I expected after googling info about him. :ybiggrin:

He had initial concerns regarding the fact that Matt has not been followed up for 2 years by a specialist and in view of the Matt's age of onset and severity of disease if biologics had even come into the equation. So it was at this point that we had an in depth discussion of the timeline of events from diagnosis till now.

He is very much of the opinion, for the same reasons as above, that we must do our utmost to maintain remission due to Matt being in a high risk group.

Now to treatment:

Imuran - He will stay at his current dose for now. He wants to consult with Matt again at the end of the university year, so late October, early November. He will then have metabolites done and if need be he will up his dose accordingly.

He wants to add Pentasa into the mix, 500mg twice a day and has written a script. I mustn't have had my poker face on because he asked if I didn't like Pentasa. So again at this point we had another long discussion about Pentasa and its value in ileal disease. He pulled up a couple of studies regarding the use of Pentasa following ileocaecal resection and the results were pretty positive. He did acknowledge that it is no wonder drug and not overly effective but argued that in Matt's specific case if we can increase his chances of staying in remission by even 1% with a relatively inoffensive drug like Pentasa then he is all for it. Matt said he doesn't mind at all taking tablets so we will add Pentasa.

B12 - He wants Matt supplemented. I asked about MMA and he said it is something he doesn't routinely test for but if need be he will.

LDN - He is on the fence about this. He regards it as experimental but is not closed down about it.

Diet - He doesn't think diet has a role in Crohn's at all and I politely disagreed. I asked about EEN and he then said, well yes, I agree that EEN has a role in the treatment of Crohn's.

Supplements - He was pleased to see that Matt is taking Vit D, Zinc and Magnesium. I asked about probiotics and specifically about SIBO due to removal of the ileocaecal valve. He said whilst there are studies that support the use of VSL 3 for other conditions, such as some liver diseases, unfortunately there are few studies regarding the use of supplements, including probiotics, and their effect on Crohn's. He is however of the opinion that if they can be taken without issue then they will certainly do no harm and who knows what positive benefit they may have in increasing Matt's chances of staying in remission.

He has recommended that we add to our supplements - Turmeric.

Matt was happy with the consult and on parting the GI told him that whatever he does in life not to lose his Mother. How could I not like the GI now! :ylol:

Happy Dusty. :dusty:
 
DustyKat said:
Well today was the appointment with the new GI. I am pleased to say all went well and he very approachable and friendly, the consultation lasted about 45 minutes. I would put the GI in his early thirties which I expected after googling info about him. :ybiggrin:

He had initial concerns regarding the fact that Matt has not been followed up for 2 years by a specialist and in view of the Matt's age of onset and severity of disease if biologics had even come into the equation. So it was at this point that we had an in depth discussion of the timeline of events from diagnosis till now.

He is very much of the opinion, for the same reasons as above, that we must do our utmost to maintain remission due to Matt being in a high risk group.

Now to treatment:

Imuran - He will stay at his current dose for now. He wants to consult with Matt again at the end of the university year, so late October, early November. He will then have metabolites done and if need be he will up his dose accordingly.

He wants to add Pentasa into the mix, 500mg twice a day and has written a script. I mustn't have had my poker face on because he asked if I didn't like Pentasa. So again at this point we had another long discussion about Pentasa and its value in ileal disease. He pulled up a couple of studies regarding the use of Pentasa following ileocaecal resection and the results were pretty positive. He did acknowledge that it is no wonder drug and not overly effective but argued that in Matt's specific case if we can increase his chances of staying in remission by even 1% with a relatively inoffensive drug like Pentasa then he is all for it. Matt said he doesn't mind at all taking tablets so we will add Pentasa.

B12 - He wants Matt supplemented. I asked about MMA and he said it is something he doesn't routinely test for but if need be he will.

LDN - He is on the fence about this. He regards it as experimental but is not closed down about it.

Diet - He doesn't think diet has a role in Crohn's at all and I politely disagreed. I asked about EEN and he then said, well yes, I agree that EEN has a role in the treatment of Crohn's.

Supplements - He was pleased to see that Matt is taking Vit D, Zinc and Magnesium. I asked about probiotics and specifically about SIBO due to removal of the ileocaecal valve. He said whilst there are studies that support the use of VSL 3 for other conditions, such as some liver diseases, unfortunately there are few studies regarding the use of supplements, including probiotics, and their effect on Crohn's. He is however of the opinion that if they can be taken without issue then they will certainly do no harm and who knows what positive benefit they may have in increasing Matt's chances of staying in remission.

He has recommended that we add to our supplements - Turmeric.

Matt was happy with the consult and on parting the GI told him that whatever he does in life not to lose his Mother. How could I not like the GI now! :ylol:

Happy Dusty. :dusty:
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What a great first visit! So glad to hear it went well. Interesting that he doesn't believe diet has any part in it and then suggests turmeric... that is a spice, right? Very interesting. How much did he suggest?

Congratulations on finding a good GI for your son! I think I like him too!:lol2:
 
Sounds like a good GI.
I had heard that turmeric had natural anti-inflammatory action but have no idea about dosing.

Be careful Dusty, he'll be radio-tagging you next.
 
@Carol - Yes, tumeric is a spice. He didn't suggest how much and I didn't ask. I didn't ask because I have read about it on the forum and researched in the past.

I have a website saved and had looked at this formulation some time ago:

700mg per capsule (498mg Curcuminoids) ~
1 Capsule per serving ~
100 servings ~
525mg Curcuma longa Extract (95% Curcuminoids), 175mg Piper nigrum ~
(3:1 Curcumin/Pepper Ratio) ~
No other ingredients of any kind ~
Freshly encapsulated when you order ~

...black pepper is mean't to enhance the bioavailability of the turmeric which is why I was considering this one. I will tag David and Dan (D Bergy), I know both use higher doses than 700mg but with Matt I would likely start with one capsule daily - thoughts?

Dusty. :)
 
So glad to hear all went well!
It's really good that Matt doesn't mind the extra pills too - Gab can't stand them! LOL
Lots O Love
Xoxoxoxox
 
Wow! So the new GI didn't leave feeling like he'd had a colonoscopy!!?? I'd say he must be a winner! Glad you liked him and glad he isn't content to just let things alone until there's a crisis!
 
I'm surprised he didn't offer you a position…well on second thought, he probably wouldn't want you that close!
 
Oh yeah...I'm sure the doc would love me greeting him every morning...

Good morning doc! Now drop ya daks, turn around, bend over and let's have a look where the sun don't shine! :ylol:
 
Wow Dusty, this guy sounds like a keeper! Liv takes curcumin/tumeric too. We use the Jarrow brand, 500mg capsules. I had her on 2 caps/day, afternoon and bedtime along with her LDN. Now that she has started the Stelara, I cut her back to 1/day as per her MD...too many variables when trying to assess the efficacy of the Stelara. Liv weighs just over 100 lbs and tolerated 1000mg of curcumin just fine, no issues at all. Good luck with your new plan! Kim
 
Tumeric is also a good at preventing alzhiemers disease. The incidence of it in countries that eat heavily laden dishes with curry and tumeric have virtually no alzhiemers. Now, that in itself is a good reason to take some everyday!
So very happy Matt is doing so well! I pray it stays this way forever!:thumright::congratualtions:
 
723crossroads said:
Tumeric is also a good at preventing alzhiemers disease. The incidence of it in countries that eat heavily laden dishes with curry and tumeric have virtually no alzhiemers. Now, that in itself is a good reason to take some everyday!
So very happy Matt is doing so well! I pray it stays this way forever!:thumright::congratualtions:
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That may be, but those countries also have little of the processed foods and artificial ingredients that our foods have as well, no? Lots of variables. Yes, tumeric may be the trick, but then again our culture and food is much different.
 
DustyKat said:
Oh yeah...I'm sure the doc would love me greeting him every morning...

Good morning doc! Now drop ya daks, turn around, bend over and let's have a look where the sun don't shine! :ylol:
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You Aussies crack me up!
Dusty, so glad to hear about things going well with this new GI. Interesting about the Tumeric. I am going to check it out. I know it has been mentioned previously. Interesting that it may prevent Alzheimer's. I wonder if it helps with Fibromyalgia forgetfulness? I may have to try it out.
I am glad to hear he is somewhat open to LDN.
 
"Diet plays no part except for when you change your diet and go on EEN and oh, here take this spice that you add to your food and I'm glad you take those vitamins and minerals which you normally get from certain foods and not from others."

:D

ANYWAY... I'm glad you like the new GI! That's great :) As for Turmeric, I was simply taking 500mg a day (now just use it in cooking) but there are much more knowledgeable people on it and Curcumin here. Dan, then I think Beach and Kiny have both dabbled with it as well.
 
Ugh! I know David but hey, he is moldable and I only have to pull out the pieces of advice that I like! :lol:

Really? I thought you were on 1500mg at one point. I don't know you better than you do, do I? :ybiggrin:

Dusty. xxx
 
DustyKat said:
Really? I thought you were on 1500mg at one point. I don't know you better than you do, do I? :ybiggrin:
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Heheh, I may have been at my height, I don't remember now, though I think you're correct. I'd go through my thread but my pregnant wife is hungry which means my life is at stake if I don't get dinner out soon!
 
Wow Dusty!! How awesome! Made my heart leap to hear it went so well! I have been worrying recently (though my Mum keeps telling me, "Don't borrow trouble!") what happens when Alex is no longer eligible to see the pediatric GI and moves on to an adult GI...

Thanks for sharing!!

((Hugs!)))
 
Wow Dusty, sounds like a good GI - and so young - should be around for a long time!! Glad the appointment went so well.
Congrats David!
 
Sounds like a great apptmt!! It's certainly a relief when you like the doctor and feel you (Matt) are in good hands! :D And, yay that he's proactive/preventative rather than waiting to treat a problem!! :thumright:
 
Gosh Dusty, he sounds like a great doc! I'm glad the appointment went so well and that he seems very proactive, interested, and approachable, which is extra good for Matt!
 
Thanks guys. :)

Pentasa and Turmeric started.

I have finally nailed Matt down to a time at which I could start and make arrangements for follow ups. I was spurred on by the fact that he made a grand statement the other day...

Matt: You know that bloke I saw?
Me: What bloke? The GI?
Matt: No.
Me: Who?
Matt: That other bloke.
Me: Bloke as in doctor?
Matt: Yeah.
Me: The surgeon?
Matt: Yeah.
Me: Well what about him?
Matt: They rang me a while ago.
Me: How long?
Matt: (shrug) I don't know, a few weeks.
Me: What did they want?
Matt: To know when I wanted my op.
Me: What did you say?
Matt: That I didn't know!

Bloody hell! Talk about like trying to get blood out of a stone! :lol:

So university wraps up for the year on the 21st October and he has follow up with the GI on the 28th October and his hernia op has been set down for the 6th November.

Dusty. :bigwave:
 
:rof: :rof: Too funny!!! And this is why we become control freaks! :yfaint:
 
And that is why an 18, 19, 20 yr old kid should not have control of his own healthcare. I assume you are the one who arranged the pre-op and op dates. Did you consult W?
 
@Dexky - Got it in one Einstein! :lol:

Did I consult W? He can barely get his undies on the right way round so why the hell would I consult him?! :wink:

@David - No he hasn't but he will be having them done when he next consults with the GI, that was one of the first things he talked about when we were discussing meds. The GI seems very proactive and wants to see Matt at least every six months. I think he would have preferred 3 monthly as he said that is the interval he normally has all his IBD patients at but he understands the distance we need to travel and Matt's university schedule. He also said he wants to start doing other tests and mentioned bone density.

Dusty. xxx
 
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Cool. One thing to keep in mind is Pentasa can increase metabolite levels. I doubt it'll matter much in Matt's case though. I was just curious to see if the increase was going to be monitored as I'd be interested to see how much it went up.
 
Thanks for that David. :)

Any mention on how much Pentasa could cause this or just Pentasa generally?
 
We are going private for Matt's surgery, we are in a health fund, and I have just received a quote for the surgeon's services only, so not the hospital or anaesthetist fee.

Total Fee: $795.00
Estimated Rebate: $636.00
Out of Pocket Cost: $158.95

I don't think that sounds too bad.

Dusty. :)
 
The anaesthetist usually has the biggest out of pocket amount.

Is the hospital in your health fund network? If its in network you usually only have to pay the health fund plan excess.
 
What a horrible thing to happen, so sorry that you are all having to go through this again. Thank goodness you are so experienced and unfortunately were able to recognise the symptoms and deal with them in such a super mom fashion. Sending you positive thoughts and hugs.
Jane
 
:oops: Sorry Jane! Ugh, I shouldn't assume everyone knows what I am blethering on about!

The surgery isn't Crohn's related, it is an inguinal hernia. So just a quick day surgery. :)

But thank you for your kind words!

Dusty. xxx
 
Very interested to hear how surgery goes, Dusty. DS has one as well that was discovered during his resection in January. It's not been an issue yet, but... it's on our radar.
 
I will surely let you know Mehita. :)

Matt had the right side done when was 12 months old (1994). At the time the surgeon said that thinking had changed and where they once did both sides they now only repaired the affected side as bilateral hernia's only affected about 10% of sufferers. Of course now I wish the thinking hadn't changed! :lol:

As it was the op didn't seem to affect him at all. Mind you he was a baby at the time so it was a bit like...what you don't know doesn't hurt you. I use to say my partner, if that had been you you would have got 3 months in a wheelchair out of that op! :lol:

So yes, it will be interesting to see the difference between the 12 month old and the twenty year old! Mind you he has an open resection so I would hope it doesn't worry him too much!

Dusty. xxx
 
No soccer in Nov. right? I imagine he'll lie still and do some light summer reading...like German tech manuals or collegiate calculus textbooks...nothing too taxing!
 
:lol: Yep, soccer season over as is uni but no doubt algebraic topology will be big on the reading list!
 
Well hush my puppies and prune my magnolia's. :ybiggrin:

I am very much a believer in complimentary medicine, well some of it, and although I have no issue with chiropractic practice it is just something I have always been a bit meh about it. Anyway, we had some training through the week regarding manual handling and prevention of back injury. One of the speakers that came was a chiropractor and it got me to thinking about Matt's hip/lower back pain that sometimes rears its ugly head. I do believe it is Crohn's related and that he likely has some sacroiliac joint issues.

I know many people that swear by their chiropractor and this bloke seemed very knowledgeable and switched on. So since there is no additional medication involved in the practice I thought I would talk to Matt about it and give him the guys card. Matt seemed very interested as evidenced by his response...cool...but I think the icing on the cake was that the fellow is on the younger side of life and plays soccer in the premier league. :lol:

Matt is not having issues at present but it seems he may pop in for a visit next time it plays up. We shall see and I will keep you posted.

Dusty. :)
 
Sounds like a good idea.
Rheumo has us do similar for DS
Range of motion exercise
Strength exercises
Lots of swimming

Hope it helps when he needs it.
 
Just keep the chiro away from Matt's neck! We had a guy from work nearly paralyzed by one. He's now retired and walks with a cane!
 
Just received a copy of the GI's letter back to the GP:

- Due to Sarah's Crohn's and striking similarity to Matt's he is raising the possibility of a genetic mutation such as NOD2/CARD15 (early onset CD)

- He feels that Matt's intermittent hip pain is unrelated to his Crohn's.

- Next consult he will do metabolites and most likely bone density.

- He has also mentioned in detail his adding of the 5ASA and the debate that exists over its efficacy in CD but has also set out his reasons for doing so.

- I have rated a few mentions but I shan't go into that! :lol: Nothing bad mind!
saint.gif


Dusty. :Flower:
 
I'm not sure Kim. I don't know if it is something he may suggest pursuing or whether he is just stating it as a curiosity.

I shall be asking at the next consult.

Dusty. :)
 
Hey Dusty, O does fabulously well with chiropractic for her lower back and hip pain. She also had issues with her neck and upper back...stiff more than pain. There is a lot in the sports world that says proper alignment can increase sports performance by as much as 10%. I can say without hesitation it has certainly had that affect for O and her running/swimming. But sooo much of swimming is body alignment so maybe that is why.

I do agree with Dex though that you have to make triple sure you have a good one. Our chiro was on the team of docs for the US Figure Skating Team and has gobs and gobs of credentials. Also a pediatric specialist.
 
I see I missed Matt's results from May. So I will add to the results received today:

FBC - All well within normal limits except lymphocytes:
May - *6.5
July - *6.4

E/LFT's (Serum Chemistry)
May - Normal
July - Normal

Iron Studies:
May - Normal
July - Normal

B12 - In May following one B12 injection it moved up from the usual 237/238.
May - 613
July - 401

Red Cell Folate:
May - *1892 (NRR 776 - 1784)
July - 1760

Vitamin D - We are dropping:
May - 92
July - 82

ESR:
May - Normal
July - Normal

CRP:
May - *9.5
July - *9.3

Magnesium:
May - 0.85
July - 0.86

Zinc:
May - 14
July - 14

In summary there are three issues:
- A B12 that rose to what I consider an acceptable level after one injection but is now dropping again. To me this is a clear indication that he needs ongoing supplementation.
- A dropping Vit D value. We reached a peak of 106 in Summer but has continued to drop off since. Is this a seasonal reflection? I am thinking that now he is taking meds twice daily that I will add another 2,000iu daily?
- CRP a slow climb to 9.6 in May and now at 9.3. He has changed labs but the reference ranges don't vary greatly so I do accept that it is reflective of the numbers stated.

David - His Zinc and Magnesium have risen but now plateaued. Whilst Matt will happily take meds I don't want to push my luck too much. What are your thoughts about these three issues, how they interact and what you would do re supplementation. :)

Dusty. :Flower:
 
The vitamin D looks good from my standpoint. I'm happy with anything over 50 in all my general patients (we live in Alaska and many of them are on 5000 units a day). I'm interested to see what David's take on this will be.
 
CarolinAlaska, What is your reference range for Vit D? Johnnys result is a 44.8 but standard range is listed as 20-60 ng/ml.
 
Our lab says "optimum levels in the normal population are 25-80 ng/mL" (on test done at Mayo Clinic in Rochester)
 
This is an interesting discussion, and I have a question for all of you about Vit D. We had a routine GI appt today and I mentioned to the nurse that when I give my son his Vit D each morning, that he gets more than one drop (1000 iu's per drop). We're in a northern climate so I thought I was actually doing a good thing, but she said I was just making expensive pee, as his body would just get rid of the extra. But Dusty, I see here that your plan is to increase by 2000 iu's, and CarolinAlaska, you mention others that take up to 5000 iu's. I'm confused. Can you help me understand?
 
It is the general consensus among health care providers that if someone gets too many vitamins, they will just pass the extra in their urine. If your son has a high vitamin D, that may be true, but I doubt it for a low dose like that. I've seen people take as high as 10,000 units a day or 50,000 units a week and their body captures and stores it, so I think your nurse may be misinformed.
 
Thanks, CarolinAlaska. The GI said my son's Vit D number looks good, but I don't know what the number actually is. I'm gonna continue to let those extra drops of D fall into my son's morning OJ. Thanks for enlightening me!

Dusty, I hope you get your Matt's levels back where you want them.
 
DustyKat said:
David - His Zinc and Magnesium have risen but now plateaued. Whilst Matt will happily take meds I don't want to push my luck too much. What are your thoughts about these three issues, how they interact and what you would do re supplementation. :)
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Hey Dusty,

I forget, were you able to get that fecal calprotectin done?

1. The zinc doesn't worry me too much as he's doing pretty good there and should continue with his current regimen.

2. He has never gotten to where I'd like to see him with the magnesium. I'd add another dose at the opposite end of the day of when he is taking it now. Magnesium rich foods would also be great. I suspect as the magnesium level increases his CRP will continue to drop as well. And IF I'm correct about my nickel/magnesium theory, it may help him as much as anything.

3. Vitamin D. For those out there wondering about his apparent high levels, Dusty and Matt are in Australia where they use nmol/L rather than ng/ml. To convert nmol/L to ng/ml you divide by 2.496. So Matt's 82 = 32 ng/ml which is way too low for a Crohnie. Dusty, I'd add that extra 2000iu.

4. The decreased vitamin B12 makes me agree with you that he needs regular shots at an interval to be optimized over time. The question is, is that inability to maintain B12 due to his resection alone or is there another variable such as SIBO or inflammation coming into play.

*hugs* to you Dusty. And if he hasn't received that fecal calprotectin, get it.
 
Thanks guys. :)

I forget, were you able to get that fecal calprotectin done?

Haven't had it done David. I will be asking at the next GI appointment. :)

1. The zinc doesn't worry me too much as he's doing pretty good there and should continue with his current regimen.

Thanks. :)

2. He has never gotten to where I'd like to see him with the magnesium. I'd add another dose at the opposite end of the day of when he is taking it now. Magnesium rich foods would also be great. I suspect as the magnesium level increases his CRP will continue to drop as well. And IF I'm correct about my nickel/magnesium theory, it may help him as much as anything.

Okay, I shall add a dose with his morning meds.

Foods: I am still struggling to get Matt of a diet that closely resembles that of low residue. It has always struck me as more than coincidental that he preferred this type of diet for such a long time before his diagnosis that I often think that he subconsciously knew something that we didn't. I will continue to prompt and encourage and hope for the best!

3. Vitamin D. For those out there wondering about his apparent high levels, Dusty and Matt are in Australia where they use nmol/L rather than ng/ml. To convert nmol/L to ng/ml you divide by 2.496. So Matt's 82 = 32 ng/ml which is way too low for a Crohnie. Dusty, I'd add that extra 2000iu.

Thanks for validation, priceless. :ybiggrin:

4. The decreased vitamin B12 makes me agree with you that he needs regular shots at an interval to be optimized over time. The question is, is that inability to maintain B12 due to his resection alone OR is there another variable such as SIBO or inflammation coming into play.

I like the bit before the OR and as much as I would like to I shan't ignore the potential issues after it! :ack:

_______________________________________________________

So topics for the next appointment, this is my diary after all! :lol:

Tests:
Metabolites
FC
Bone Density

Supplements:
Confirm where we are at with B12

Physical:
Discuss weight

Any other thoughts or opinions?

Thanks!
Dusty. :Flower:
 
You know what I think :dusty:....I think it's a good thing you and David are a lot smarter than me!!!
 
So I refilled the dosette today...yes me :bigwave:, cause in some areas the umbilical cord is still hanging on by a thread! Well maybe more than one thread. :ybiggrin:

So I have added an extra 2,000iu of Vit D and another Magnesium cap to his morning meds.

My next challenge was telling him and wasn't sure how I would, after all he is in the NRR for both Vit D and Magnesium and as far as he is concerned normal is normal whether you are one point above the lowest level or one point below the highest level. (sigh)

As it was fate intervened! :lol: We were just finishing off dinner and I was in the kitchen when my phone rang, it was a call out. Matt had asked if I could pass him his tablets. Well I was a tad distracted and took his morning meds out instead of his dinner ones. He asked where the Imuran was and I said...oops, they are your morning meds. Of course he said...they don't look like my morning meds. At which point I told him the changes I had made, why I had made them and then ran out the door! :)

Dusty. :shifty:
 
To a teenage/young adult male it is akin to a grain of sand under their foreskin. :ybiggrin: Assuming they have one of course, in which case if they don't you will have to find another analogy.

Dusty. :tongue:
 
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The two monthly bloods are in again and all is going well bar one glitch. :)

FBC - All normal except the stock standard lymphocytes - 0.68 (1-4)

Biochemistry - All normal except cholesterol which is always a snig below normal.

Glucose - Normal

Iron Studies - Normal

CRP - Normal, this has been a little elevated in the last two blood draws.

ESR - Normal

Vit D - Significantly raised from last draw at which point I increased from 2,000iu daily to 4,000iu daily. Has gone from 82 to 113nmol/l. :)

Magnesium - Normal 0.80. David, I increased from 1 capsule daily to 1 capsule twice daily. Previous draw the level 0.86.

B12 and Folate - B12 is continuing to drop off since last injection. Previous reading 401 now 291. Folate is climbing and is now above normal. Previous reading 1760 now 1807. In my mind it must be a B12 deficiency.

Zinc - Pending
_____________________________________________________________

So CRP is back to normal and ESR even lower with the NRR. Changes since last blood draw. Vit D dose doubled, Magnesium dose doubled, Turmeric added.

GI appointment is 29th October and these are the issues I am going to discuss:

-B12 and Folate levels, including the possible effects of the changes stated above.

-Thiopurine metabolite testing. (Already flagged by GI)

-Faecal Calprotectin testing.

-Bone Density testing. (Already flagged by GI)

-Genetic testing: Due to likely hereditary factors with the kids is it worth testing and if so what benefits may it provide.

Any other questions anyone can think of?

Dusty. :Flower:
 
Great news Dusty!!

I would love to hear what your GI says about Genetic testing and whether it is worth doing.
 
Nice. I'm glad to see the CRP now normal. I bet that is, in part, due to the increased dosage of magnesium. If it was me, I'd maintain the magnesium dose and see what happens next draw with the level.

Keep in mind Turmeric can chelate iron so keep an eye there but I think its benefits are worth it.

Sounds like he may need more frequent B12 injections though and my thoughts in my post above still come into play.

*hugs*
 
Great news! Glad his CRP has dropped to normal! I'm so glad to hear he's continuing to do well. :D

Does Matt have FC tested on a regular basis? If not, and just out of curiosity, with all good results, why will you be testing? Just as a precaution 'now'? Or will you be requesting FC on a regular basis?
 
Thanks guys. :)

@Johnnysmom - I will be sure and give a rundown of how the appointment goes.

@David - Will do with the Magnesium. I will continue to monitor the iron. I will include what you have said in the B12 and Folate discussion. Thanks!

@Tesscorm - Matt has never had a FC done. I would like it done for 2 reasons - Firstly, Matt's bloods have always been reflective of his disease activity but I would like to have a inflammatory marker that is specific to the bowel to see if that marries up with the serum markers. It would then give me a better idea for future reference. If it is within a normal range then I would not pursue regular testing but rather use it on a needs be basis. Secondly, David has suggested a look FC to see if that is perhaps tying in with his inability to absorb and maintain a sufficient B12 level. Matt's B12 has always been 'normal' but at the low end and what I personally believe is too low for young adult male. He was 580 immediately post op and then gradually levelled out at 237/238. I would like to see him consistently back up over 500. If FC is normal then judging on the last 4 months blood tests a 3 monthly injection should do that job nicely.
Matt's resection was conservative in the scheme of things and I do think that diet may be a contributing B12 deficiency factor on top of the loss of terminal ileum.

Dusty. xxx
 

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