Update on Dusty's Matt

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Dusty,
What brand tumeric is he taking? I did a lot of research on tumeric for my own illness and I found out that unless it is combined with an ingredient called Bioperene (actually found in black pepper) then it is worthless. Without the Bioperene it is not absorbed into the body at all. I don't remember if we have talked about this in the past or not.
 
Thanks for watching my back Kim. :) The preparation that Matt takes does include black pepper.

Zinc level returned today - *26! (NRR 10-18)
Matt was Zinc deficient, 9.8 or thereabouts, in November last year and Zinc supplementation was commenced with the preparation and dose being Zinc Citrate 30mg daily. His level rose to 14 and it has stayed consistently there until this draw.

So 3 scenarios that I can think of:

1. Could I have actually made a blunder and doubled up on the Zinc instead of the Magnesium? If so it would not have been for the whole 2 months since the last blood draw. The capsules are identical except for the size and Matt also did not notice a discrepancy with his meds. I have checked the purchase receipts and the remaining supply of both supplements and as far as I can ascertain they match with no error being made, well certainly not one that would have lasted longer than a week...

2. That being the case is the result a one off due to an artefactual error? Since serum Zinc has very specific storage methods this may well be the issue, particularly when incorrect storage results in elevated levels. I have not spoken with GP since receiving the result late this afternoon but will see him tomorrow so unsure if he will want it repeated or if he will just say to press on as there are no other clinical indications of a problem. Now, if human error is not to blame...

3. David, anyone, do you know if increasing Magnesium and/or adding Turmeric enhances the bioavailability of Zinc?

Thanks!
Dusty. xxx
 
Do the pills come in a brown paper bag?? Since Mommy, or is it Mummy, fills Matt's pill boxes, surely you, of all people, wouldn't have made that mistake!! I think you can safely assume No. 1 is out!

What are the storage guidelines for Zinc??
 
So you are actually admitting to all and sundry that I am never wrong Dex? About fecking time! :lol:

Processing Zinc samples:

Once the blood is obtained, a cold chain (2 to 10 °C) must be maintained. Samples should be stored and/or transported in a refrigerator or a portable cool box (electric or with ice packs). It is recommended to keep a temperature log for temperature documentation throughout the process.

When the storage temperature is 2 to 10 °C, the sample is stable for up to 24 hours.
If the cold chain cannot be guaranteed until the sample is processed, it is important to separate the serum or plasma from the red blood cells within 20-30 minutes.
These precautions are important to prevent zinc being transferred from blood cells to serum or plasma, which leads to an artificial increase in the zinc content.
After centrifugation, the plasma or serum should be transferred to a zinc-free polypropylene tube and stored in the refrigerator or freezer until analyses.
Click to expand...

Dusty. :panda:
 
DustyKat said:
3. David, anyone, do you know if increasing Magnesium and/or adding Turmeric enhances the bioavailability of Zinc?
Click to expand...
This is one of the most difficult aspects of supplementation. Science really has no clue still about so much. The answer to your question is, "maybe". Vitamin and mineral interaction are so incredibly complex that science still has much to learn. And when they do learn something, another study comes along four years later that contradicts that study for whatever reason. Turmeric can chelate iron and iron supplementation may decrease iron. So could iron chelation increase zinc? Maybe. From Linus Pauling: , "Supplemental (38-65 mg/day of elemental iron) but not dietary levels of iron may decrease zinc absorption (9). This interaction is of concern in the management of iron supplementation during pregnancy and lactation and has led some experts to recommend zinc supplementation for pregnant and lactating women taking more than 60 mg/day of elemental iron".

Attached is what is called the, "Mineral Wheel". It shows KNOWN interactions. Is there a direct, known interaction between Mg and Zn? No. But that doesn't mean they can't interact with other minerals which then causes flux. Maybe Mg affected Ca which affected Zn. Maybe Zn affected P which affected Mg. :ybatty: :ybatty: :ybatty: Will a new line be drawn on this wheel anytime soon by science? Very likely.

MineralWheel.jpg


And then of course there's the fact that tests can be off from time to time as well. :ybatty: Finding that long term trendline and throwing out the outliers is important. Just one of the many reasons why someone with Crohn's disease, a disease characterized by malabsorption and deficiencies should have regular testing to monitor all of these levels. You're doing good Dusty.

I realize that really doesn't much at all. I'm sorry :(
 
Thanks David. :hug:

And please, no apologies! You have provided me with more information than Mr. Google has! :ybiggrin:

Dusty. :panda:
 
Firstly I must apologise for not being around much. Have had so much going on around here...my dad is not well and Sarah is moving back home so I have had to rearrange the house! Things are starting to settle now though and I am now trying to catch up...have you noticed that? :lol:

So in amongst all of the above we had Matt's routine GI appointment, which always involves travel and a few days away. The appointment went well and we discussed quite a few things, even Matt was very animated and involved! :)...

Nod2/Card15 - The doc doesn't think it is worth testing at this point as we already know the disease profile and targeted treatments are not available. If there were other unaffected siblings then testing would be worthwhile. Also he suggested it may be warranted when it comes time to start a family.

FC - He personally does not see the point when asymptomatic even as a baseline reading. I don't disagree as Matt's serum markers have always been very sensitive to changes. I did discuss Sarah though and said in her case I would think that FC may be the way to go as her bloods are so unreliable, he agreed. In any case I left with a request for Matt to have it done. :shifty-t:

B12 - Spoke at length about this and we agreed to disagree about what an acceptable lower level is. He is happy for the GP to continue supplementing if that is what I want. Now I just sound like a dominatrix! :eek:

remission - He discussed this at length with Matt. He explained to him what deep remission is and how they go about determining that state...clinical, endosopic and histopathological. If in doubt he prefers to go this route than rely on clinical factors alone.

Immunosuppression - He spoke with Matt about the risks of the various drugs. I think they both enjoyed the statistical and logarithmic aspects of the data. :lol:

Matt asked quite a few questions including what he should be looking out for and described symptoms he sometimes has and if he should be concerned about them. The GI wasn't and Matt was happy with that as was I!

The GI is happy with where he is at and wants to see in 6 months, all being well. He asked if I had met the IBD nurse, I said no (the practice didn't have one before), he said he would introduce us but felt that she would likely be no use to me. :lol: I did meet with her though and she was very nice and I now have her contact details. :)

Matt has his hernia surgery on Wednesday 6th Nov so more fun times ahead! :eek2: I have no doubt all will be well. :)

Dusty. xxx
 
Ugh! Left out that he will also have:

Thiopurine Metabolites done along with FBC, UEC, LFT's, CMP (Calcium, Magnesium, Phosphate), CRP, TFT's, Coags, Fe Studies.

He has held off on the bone density at this point as it isn't a necessity and in view of Matt's history he would rather not expose him to further radiation unless required.

Dusty. :)
 
Glad all is going so well with Matt! :applause: and I bet you're so looking forward to hug Sarah back home with you for a while!

Sorry to hear your dad is unwell. it is truly another worry for all of us at this age! Hope it's something quickly resolved.

And good luck with Matts surgery! :hug:
 
Matt’s surgery went well. :)

The anaesthetist was a rather austere woman but obviously good at what she does. She was speaking with Matt about post op pain and stated that this doctor’s patients seem to have little or no post op pain and she felt the reason for that was he was so good at working with tissue. Well so far that has proven right, he has the tidiest incision and up to now, fast approaching 24 hours post op, he has had no pain at the surgery site. :thumleft:

He was back home about three hours after arriving back in his room at the hospital and has been walking and moving freely since. The thing that has bothered him the most is the sore throat and a tad of nausea last night. If it stays at that…well it doesn’t get better than that! :)

Onwards and upwards!

Dusty. xxx
 
Yayy!!! Glad it's done and went well!! And hoping it continues to go well!! :thumright:
 
I thought things were a bit quiet on the Dusty front! I hope things will settle for you now and you get a bit of a breather. Big hugs x
 
Matt had his bloods done on the 4th November and all were normal except his CRP, it has crept up again to 21 this time, and his lymphocytes which are always below normal but have dropped off slightly more from the previous draw. His FC was normal, can’t remember the exact number now but nothing out of the ordinary.

Metabolites: 6MMP was fine but his 6TGN was elevated at 885. I recalled what you said about 5ASA’s and increased TGN David but it wouldn’t account for that degree of increase.
As a result his Imuran has been reduced from 100mg to 75mg daily. They are to be repeated in 2 months along with all his other bloods.

He seems very well within himself and is due to go away for almost all of January to a mathematics summer school at ANU in Canberra. To be honest, with all else that is going on just now I really am turning my back on my Crohn’s at present and just playing things by ear. I will wait until he returns from Canberra at the beginning of February and have the bloods done then.

He has continued to have no issues post op, so much so that he was to be reviewed 4 weeks post op, which would have made it this past week, but things have gone so well that I haven't even given it a thought to make an appointment, neither has he mind! :lol: Hmmm, I am sounding more than a wee bit apathetic, must be the Crohn’s effect. :eek2:

Pressing on. :)

Dusty. xxx
 
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Hey dusty! I'm glad to hear that Matt is doing fairly well :)

How is your dad doing? I'm sorry I haven't been around a ton lately, but I think of you Matt and sarah often :)
 
I'm glad he's doing so well after his surgery! :D I would imagine the trauma from any surgery, even as he's recovering well, can unsettle things in your body. Hopefully, the reduction of imuran will resolve the TGN issue and all else will settle soon as well. :)
 
No apologies Amanda…:ghug:…you have more than enough on your plate!

Dad isn’t doing so well. :( He has really gone down in the past couple of months, both mentally and physically. I think he has reached a point where everyday is a bonus but nothing is imminent at this point, it could well go on for some time like this. For his sake I wish he would go in his sleep one night. Mum is struggling with his behaviours, thank god my brother is living with them but I even see him struggling with it at times. :( I am heading down again soon to spend Christmas with them.

Sarah is home again and also seems to be doing well. She has a UTI at present (?honeymooners cystitis :eek2: I ain’t sayin’ nuthin’ :lol:) and her usual cranberry and copious amounts of water wasn’t hitting it on the head. Typical that the one time you need the doc he wasn’t available but as it was he did a script and path form for me and left it at the desk, seems I owe him one. :lol: As a result she is now getting on top of it. :)

Dusty. :heart:
 
Sorry Tess, I had the page open for a while before I submitted and didn’t see you had responded. Thanks hun. :)
 
I'm so sorry your dad (and family) are still struggling. These situations are certainly heartbreaking and so tough on everyone. I hope all goes well over Christmas!!
 
Hi Dusty. Glad to hear Matt's bloods were good :) I hope all continues to fly well as he does his math course.
 
I'm sorry to hear your dad is still not doing well :( will keep all of you in my thoughts and sending Sadie bear hugs as always!


Sent from my iPhone using Tapatalk
 
Also sorry about your Dad - it's where we parents of young adults are I suspect! (I have a 93 year old very vague Mum!!)
As for the "honeymoon" UTI, cranberry caps along with the antibiotics, and add a daily dose of probiotics!!


HD
 
Thanks ellie. :ghug:

Sarah: I received the MSU result on Monday and it wasn’t indicative of a UTI so she must have already been getting on top of things. She is back to normal now. Happy child, happy Mum! :lol:

Dusty. :)
 
Matt had his bloods drawn about 10 days ago and all continues to go well. :)

He had the full gauntlet done…

FBC, LFT’s, UEC’s, CRP, ESR, Iron Stores, Folate, B12, Vit D, Magnesium, Zinc and Thiopurine Metabolites.

Just about everything was normal, including CRP this time, except…

His lymphocyte count which always sits at about the 0.6/0.7 level, although last draw it was 0.5 so it was good to see it lift again.

His Zinc is still elevated at 24.6 so I am withholding for 2 weeks and am tossing up whether to reintroduce on alternating days or 3 times a week. David?

Being Summer here he has been outdoors a fair bit so it was good to see his Vit D at the highest levels yet…120. Twilight soccer (It is still sunny! :lol:) started this week so hopefully that will keep him outdoors a fair bit until the soccer season proper starts at the end of April.

Magnesium is holding steady at 90 with taking one capsule twice daily.

B12 is in the normal range but has continued to drop off again. I don’t think Matt, the GP or the GI are pushing for higher numbers so a bit like banging my head against a brick wall there but I refuse to stop nagging about it to all three. :)

Metabolites should be back about Thursday so it will be interesting to see what changes there are to the 6TGN numbers, if any, by dropping the Imuran back to 75mg daily.

He enjoyed his month in Canberra at the mathematics summer school and will start his Honours year at uni this coming week, he has picked up further work this semester with marking assignments and tutoring. All in all he seems to be in a good place both mentally and physically. :dance:

Onwards and Upwards!
Dusty. xxx
 
I'd probably cut down on his zinc intake then, yes. As long as the doctor is ok with that of course.

Let's see if we can maybe be scientific-ish about this though. What was his level when he began supplementing and how much does he supplement per day?
 
IIRC his initial reading was 9.

Started supplementing with 30mg daily, as recommended by the GP, and I have continued with that ever since. It brought his levels up to 14 and they pretty much stayed static at that until after our initial consult with the new GI.

Now the things that changed since then and that coincide with his sharp rise in Zinc are:

1. Pentasa was added, 1grm twice daily.

2. Turmeric was added, once daily.

3. Magnesium was increased to twice daily.
 
Commenced Zinc around the beginning of December 2012 starting from a level of 9.

28/01/13 - 12.7

25/03/13 - 14.2

29/05/13 - 14

24/07/13 - 14

24/09/13 - 26*

We spoke about it here:
http://www.crohnsforum.com/showpost.php?p=705909&postcount=906

I did withhold his Zinc for 2 weeks at this time but recommenced at the same dose.

November bloods were ordered by the GI and I didn’t realise at the time that Zinc wasn’t ordered, else I would have added it.

06/02/14 - 24.6*

The other thing I changed at the same time as the other changes was increasing his Vit D from 2000iu to 4000iu daily.
 
Can I add a guess here:

I believe the thiopurine metabolities will have dropped as the lymphocyte count has risen.

Any chance you got Medicare number for this test?
 
Why the caution on Zinc re: Immunosuppression? Do they think it may cancel out the effect?
Good article David. :)

I don’t think so but will have a look.

@Catherine. I have asked twice but they never get back to me. :( I will keep asking though.
 
Very little available in Oz in lower doses of Zinc.

Is say dropping to 15mg better taken daily or is there no difference in taking 30mg second daily??

There is only one lower dose of Zinc Citrate available that I can find. Nothing that is Zinc Citrate only and the one I can find has Vit C added.
Note: I have only had Matt’s Vit C done once and he was toward the lower end of normal...(NRR 10-115) 35 umol/l.
 
Thiopurine Metabolites back.

Since reducing the Imuran to 75mg daily his results have dropped to the following:

6TGN - 527 (from 885)
6MMP - 548 (from 1130)

GI has been in touch and wants him to stay at 75mg. I am still pondering about this given that ideal levels of TGN are below 450 but have asked that he write to the GP about the change in dose three months ago so I will see what he says in the letter.

No consultation with anyone but after a two week withholding period I have recommenced the zinc. I have decided to drop it back to three times a week until bloods are next done in a couple of months.

All continuing to go well on the Crohn’s front and life in general for Matt. :)

Dusty. :Flower:
 
Glad things are going okay. Our GI also seems happy with 6TG levels being 'a bit high'. I think Andrew has similar levels to Matt, and they are happy for him to stay on his current dose of 50mg. I suppose so long as the kids are feeling well in themselves it must be alright.
 
Our Gi was ok with a little high for a bit provided ast /alt were ok .
Once those numbers went high . The doc increased monitoring until it became apparent that something else ( namely allopurinol ) needed to be added to protect the liver .

Glad things have normalized .
 
Matt had his routine bloods done last week…

FBC - All well within normal limits except Lymphocytes 0.7* (1-4), back to his regular low level. Hb 16.4 (13-18) A reference for you Tess.
LFT’s & UEC's - All well within normal limits.
ESR - 11 (<30)
CRP - 6.6* (<6) He does have a cold.
B12 - 276 (180-740) Hmph.
RCF - 1087 (>630)
Magnesium - 0.83 (0.70-1.10) Has dropped off from the usual .90, not sure why.
Zinc - 17.3 (10-18) Dropped back to three times weekly after last two draws showing elevated levels.
Vit D - Always takes longer to get the results and have just realised I haven’t chased them up. :redface:

Iron Studies:
Iron - 7* (10-30)
T’ferrin - 27 (27-46)
T. Sat - 13 (13-45)
Ferritin - 68 (20-300)
These have nearly always been in normal limits but never at brilliant levels so these results do not surprise me.

He has his next GI visit the 5th June so I know what we will be talking about. :wink:

Other than that all is going well. Uni is very busy for him between course work and working so I won’t be sorry to see the mid year break come, plus soccer season has started.

Sarah is continuing to do well, no signs that everything is anything but good. She is doing her first teaching prac and really enjoying it. :) She has been saving her pennies hard and is in the process of buying a new car (oh joy…not! :lol:) and for her mid year break she is going to the US for 4 weeks and staying with friends that she met at UNSW. Not sure where or what she is doing but I think Colorado was mentioned. Travel insurance has been organised, phew, otherwise I told her at the first sign of anything wrong medically you get on a plane and get home! :eek2: :lol:

Dusty. :Flower:
 
Iron levels, the one out range is "iron" which is one that is considered by many as being unreliable. For interest what time of day was the blood draw done. "Iron" is the most reliable when blood in drawn at 8 am.
 
Thanks Catherine. :)

Matt + Teenager + His Own World = Afternoon blood draws. The one consistent is he consistently has them early afternoon so at least that might be a reliable track! :lol:

I know what you are saying about the iron and his other results including MCV are not indicative of Iron Deficiency Anaemia BUT, there is always a BUT! since I clearly have so little to focus on. :lol: I am looking at his Iron Studies overall and seeing him skating close to line so much that I think to myself do I take a proactive but conservative approach and catch him before a ?likely fall or wait and watch, and that is what I will throw into the GI’s lap. :)

(((SIGH))) Maybe I have to get over my dislike of things not being at least mid range and above….damn you B12, Vit D, Zinc and Magnesium! You are destroying my outlook on things! :lol:

Dusty. :pika:
 
Could B12 be the one to work on? Low iron, low sort of b12 and high folate. I think Matt has high folate.

Still can't work why when we treat B12, iron increases and folate falls. Maybe disease in remission helps too.

With Matt's being ferritin at 68 he doesn't have a problem with iron levels unless inflammation is playing a part and believe me when the testing people think inflammation they like to make lots of notes on the results:smile:

One thing to check does the blood order have a comment about monitoring level for Crohn's patient on aza. Ours do went ordered by the GI but not when ordered by gp.
 
Ugh! B12! It is my nemesis! :voodoo:

I want it at least twice what the level is but when I last spoke with the GI about it he went on about some loop effect thing and I wasn’t paying enough attention, probably thinking of my next question cause it wasn’t what I wanted to hear! :lol:

Matt will take tablets until the cows come home but when it comes to needles he will happily give them a wide berth. I have nagged the GP about it and he is happy to give them but of course Matt makes no mention of them when he goes because, well…the levels are normal Mum! :yfrown:

I shall talk about the whole Iron Stores/B12 at the next GI visit.

Yes, the referral states in the clinical notes that it is Crohn’s Disease, Right Hemicolectomy, Imuran or various combinations of that.

He doesn’t have any overt signs that there is anything going on Crohn’s wise.

Dusty. :sheep:
 
Dusty,

Am so glad Matt continues to do well!!! And only needs some minor tweaking! :)

Re the B12, zinc, etc. - could the reason for his consistently low-ish levels simply be that he is unable to absorb more? As he's had some bowel removed, is it possible the remaining bowel just cannot absorb more, even if supplements are given?

In any case, I'm glad he is healthy and doing all that he loves - school, soccer... :D

And, glad the Sarah is moving 'full speed ahead'! ;) The U.S. trip sounds so exciting! I'm sure she'll have a fantastic time!


I wasn’t paying enough attention, probably thinking of my next question cause it wasn’t what I wanted to hear!
Click to expand...
This made me laugh as I've caught myself doing the same thing! :ybatty:
 
Thanks Tess. :)

I think I have misled you with the supplements...bad Dusty. :redface: All but the B12 are at good levels (in my way of thinking) but I surely see what you are saying. I think he likely has the ability to absorb what is needed via supplements but can’t maintain the levels without continued supplementation due to not absorbing via the normal channels.

I have chased up the Vit D and his level is 118. :)

Dusty. xxx
 
Dusty - Unrelated to supplements.....I think I need your autograph! :rof: Surely over 50000 views for your personal thread deserves an award!

Love you. :ylol2:

:congratualtions:
 
GI visit went well. :)

Spoke at length about the Iron Studies and B12.
The GI is happy with the Iron Studies due to the Ferritin level and gave a very lengthy explanation as to why.
B12 - We spoke about my observations of Matt, Matt said nothing, and the GI spoke to Matt about B12 and the difficulties of obtaining true levels.

The GI asked Matt how he felt he was going and Matt said he felt that the past 6 months is the best he has felt since being diagnosed! :) I did offer to leave the room but Matt said he didn’t need to talk about anything privately. They then went on to talk about Maths and other stuff.

Plan:
  • All going well consult again at the end of the uni year (?Nov).
  • Recommended B12 IMI quarterly.
  • Next bloods to include TPMT again and a recheck of Quantiferon Gold and Varicella Titres but not the Heps.
  • Meds unchanged.

Dusty. :panda:
 
Wonderful update! Your kids give me hope!

Momtotwo -- Quantiferon gold is a blood test to check for TB.
 
Thanks guys, you are the best! :)

Sorry for the slow reply Momtotwo :redface: yep, TB test.

Dusty. :Flower:
 
Just back from seeing the GI for both Matt and I.

Matt:

Bloods done a couple of weeks ago were all normal. Matt stated he has no issues and all is as usual. :)
The GI Spoke at length with him about various things including the risks of Thiopurines in someone his age. This was raised, once again, due to the GI emphasising that his age of onset and the need for surgery so soon after diagnosis put him into the severe category of disease. He is to have metabolites done again to ensure he is on the lowest effective dose possible. Of course there is nothing to say that this lowers any risk further but it can’t hurt.
This was countered with a more positive discussion on the statistics of recurrence of disease following surgery. The GI stated that if you get past the two year mark without a flare then the chances of flaring reduce considerably, for how long though is anyones guess. A lifetime would be good! :lol:
I then asked about his views on FC as a marker of disease status. He feels that for UC and large bowel disease it is a very reliable marker and so he uses it primarily for those with UC and large bowel Crohn’s. However he doesn’t agree with the recommendations of some cancer associations in relation to scoping for this same demographic as FC doesn’t replace screening for their higher risk of colorectal cancer. Hence he scopes every 1-2 years. As far as Ileal/small bowel disease is concerned he doesn’t think that FC is reliable enough. He bases this on studies and his own observations. As far as I can ascertain, for some time now he and his IBD nurse have been running FC in conjunction with scopes. They have found very good correlation between the two with large bowel disease but not near as promising a marry up with small bowel disease.
He also tried his darndest to get Matt to tell him what he was going to do next year, he finishes Honours in a matter of days, but it was to no avail. :lol: All I could say was welcome to my world of…I dunno.
So plan at this stage is repeat bloods with metabolites, a view to scoping in the next 12 months and review again next June.

Me:

Well I had I scopes due to my issues with upper abdominal pain. The GP reckons I have Crohn’s and well suffice it to say I just looked at him and laughed and said no way. I believe it is a feral gallbladder. Anyway, prep was an absolute delight…2 Senekot followed by Picoprep, then Glycoprep and lastly more Picoprep. The term pissing out of your arse springs to mind! :eek2: But wasn’t the sedation a dream! The last thing I remember is the anaesthetist, he could put his shoes under my bed anytime!, saying to me…roll on your left side before you fall asleep. I was thinking yeah no problem, I am wide awake! I rolled over and that was it, I was gone. I hope they enjoyed the view. :)
I saw the GI after the scope but he also did my review during Matt’s appointment the next day. He showed me pics and the basically upper scope is normal, just the tiniest hint of a hiatus hernia, so nothing to be seen that accounts for the pain. Biopsies taken.
Lower scope was normal apart from one polyp in the caecum, which he removed. He had the pathology results and it was a precancerous adenoma. With that in mind I am to be rescoped in three years. Biopsies taken.

So all in all a productive and good visit. :)

Dusty. xxx
 
Great news that Matt is still symptom free and the positive news of less risk of flare this far out from surgery!

Feral gallbladder...that is the most awesome term ever! I'm so stealing that to use! I hope your symptoms have abated and C would agree with you on sedation being a dream! Hee have a scope every six months if he could!
 
Glad both Matt's apptmt and your scope went well. Great news re Matt passing that two year hurdle! I'm with you in wishing it's for life!! I wonder if he meant two years "post surgery" or just two years "post last flare" - I hope is it's the second and all the kids can get to that point! :D

And, glad your scope went well :) I hope your systems do alleviate, NOT to return! :)
 
Thanks all. :)

@Clash: I haven’t patented that term yet so steal away! :ylol:

@Kim: I had an ultrasound back in June that showed some gallstones, there was no sign of infection, disease or blockage. But in my mind that doesn’t mean they couldn’t mobilise and cause an acute blockage that then passes. I don’t really have any of the classic gallbladder symptoms and neither is the pain classic. Hence why I think it is feral. :lol: I will see the GP after he receives correspondence from the GI and discuss things then.

@Tess: Sorry mate, he only spoke of two years post surgery but I agree wholeheartedly with your sentiment! :ghug:

The really spooky thing was…when I was going down to Port with Matt I realised that it was the exact same week 4 years ago that we were doing the same trip to the GI and he received the official diagnosis of Crohn's. I even had my scope the same day as he did! As I said to the GI when he was giving me my results…man I wouldn’t give to swap places with Matt. *sigh*

Dusty. xxx
 
Dusty,
You could be right about the feral gallbladder. My doctor is making me do a HIDA scan for gallbladder even though my pain is not in the normal gallbladder spot but I have such terrible nausea.
 
That's great Matt is doing well. Sorry to hear you are no further forward for yourself. Sounds just like my endoscopy :ysmile:, nothing showed but a small hernia. The GI said it was likely that causes the severe chest pain - who knows.
 
Things have been a bit topsy turvy at this end of late, hence my absence from the forum. None of it has been Crohn's related, other family related issues, but just when things seemed to be evening out a tad Matt has become unwell.

In the past month or so he has complaining on and off of a 'sore tummy'. This has necessitated him cancelling a couple of tutoring sessions so I know it is more than middling. Also on the eve of Good Friday he told me he had had some blood that morning when opening his bowels. Bleeding has never been a symptom for him in the past and he has had one further episode since. The amount is only small and fresh and nature so it may well have nothing to do with his Crohn's.
His appetite is waxing and waning but I see no obvious weight loss. He does not know how much he weighs and is far from interested in finding out. He has had no other intestinal symptoms.

However he does have other 'stuff' going on, that being what appears to be a persistent state of upper respiratory issues. They are allergy/hayfever like in presentation with a runny/snuffly nose, sneezing and coughing.

He has a couple of things trending out of NRR over the past 3-4 months. His last bloods were done the week preceding Easter. CRP has been elevated and at a consistent level of about 12-14 (1.2 - 1.4 US). Eosinophils elevated this run and Lymphocytes, which have always been sub normal but are now trending more and more to the low 0.5's - 0.6. All other bloods are normal including Hb, Ferritin, ESR, platelets, combined WCC and all his vitamin and mineral levels which were done at this last blood run. Thiopurine metabolites were done in December and at that time all was good.

I sent an email to the IBD nurse over Easter outlining the issues Matt was having and asking what the likelihood was that his bloods were reflecting simmering intestinal inflammation, upper respiratory issues that have coincided with his declining lymphocyte count or both. I didn't really expect a concrete answer because to be fair how would you really know, it was more a case of me just putting out there.

The reply in consultation with the GI was, in view of the fact that Matt is a man of few words and he has volunteered the information he needs a thorough review sooner rather than later. The GI is overseas at present and will be away for a couple of weeks yet. With that in mind his Pentasa has been doubled in the interim. Scopes booked for the 19th May and in the week or so preceding the scopes he is to have a full blood work up, including metabolites, a FC and an MRE.

I am trying hard not to look at him and see things that perhaps aren't there but to me he does have that look about him he had 4 and half years ago...tired with dark circles under his eyes. Then Friday just past he woke from his sleep with a headache that presented as pain behind the right eye accompanied by nausea and one episode of vomiting. He has never had this occur before. Sarah and I both suffer with migraine so perhaps it was a migraine, he did not have an aura but then not everyone does. Many of the symptoms seem to match a cluster type headache but then again this was just the type of thing Sarah had pre-diagnosis. *sigh* Now, I did say I was trying NOT to read into things that aren't there didn't I? :eek2:

He already had his 6 monthly consult booked for the 4th June and they want to keep that at present, just in case he does need face to face follow up regarding histopathology etc.

TBH, overall he isn't that bad and he doesn't know himself if what he is experiencing is Crohn's as it is not what he felt last time.

Pressing on and keeping everything possible in a constant state of being crossed!

Dusty. xxx
 
DustyKat said:
Then Friday just past he woke from his sleep with a headache that presented as pain behind the right eye accompanied by nausea and one episode of vomiting.
Click to expand...

The headache thing rings a bell. I rarely get headaches that are bad enought that I have to take Tylenol.

I had a similar experience a few years ago when I was dealing with my stricture. I would wake up during the night with a severe headache behind my right eye. It was so bad one night that I went to the ER. This continued for a few days then stopped. This would have been when I was into my frequent “flares” due to the stricture. I don’t know what caused it - the only event that ties it to Crohn’s or treatment was that at about that time, my Imuran dosage was increased from 150 mg/day to 200 mg/day (it was later dropped back 150mg due to the white cell count dropping).

My only other experience with this type of headache was about 3 years after diagnosis, when I was pretty much in remission due to Imuran and 5-ASA, I kept getting a similar headache at the same time each day over the course of a few days. The only thing I could think of was that there was something in the particular university classroom that was triggering it.

Given the upper respiratory issues, could there be a sinus connection?
 
DustyKat I am guilty like you tryiNG to read into symptoms and what they really mean. So I don't let my anxiety get the best of me I write all the symptoms down every few days to compare. The waiting on how the body will heal or not heal, and what that means to our kids will make you go mad. Waiting on possible answers is hard. Big hugs!
 
Sorry to hear all this. Waiting is so hard, especially when your child is ill. Hope things get better soon.
 
Thinking of you both. Do much better with your head in the sand, pity it doesn't get to stay there! Hope the scopes and tests go okay
 
Dusty,
Thinking of you and Matt. Hope they figure out quickly what is going on. Would like to stick my head back in that sand as well!
 

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