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05-22-2012, 10:05 AM   #1
Tesscorm
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EN question

So, nurse finally called re Stephen's tests a couple of weeks ago! And I'm a bit annoyed at what they're telling me now...

His ESR is 20 and CRP 27 - so still high but fairly consistent with results in the April. (We only had blood tests redone so soon because he was already going to be at the clinic for a scheduled MRE and, as he'd been feeling 'off' for a few days, I'd requested a repeat of the tests.)

MRE showed approx. same amount of inflammation as in the past (last MRE in Oct/Nov). But, I'm annoyed because their comments last time were 'just small patches' of inflammation primarily around the TI and distal ileum. Now they're saying the inflammation is 20-30 centimetres at the end of the small bowel. Okay, someone correct me if I'm wrong but 20-30 centimetres doesn't seem like small patches to me??? But, maybe that amount is considered 'small'?? No stricturing was found.

So... my question... I know that EN has anti-inflammatory properties, so I'm wondering if increasing Stephen's dosage would help in reducing the inflammation. Not thinking of changing his diet, just increasing the formula either in amount per night or having him take the formula 6 nights instead of 5 per week. Would this help?? Any thoughts?

Stephen's feeling fine now and the tests were done when he was going through some 'off' days - so, I don't know if tests today would show less inflammation?!?!? Wish I could get an at-home blood test for inflammation levels! Poor Stephen - I'd probably be doing blood tests hourly!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-22-2012, 10:17 AM   #2
Farmwife
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Sorry to new to offer advice on EN But I'm happy to here he's doing better!
Keep up the good work mom!

Farmwife
05-22-2012, 10:48 AM   #3
crohnsinct
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Tess -

WHAT? Small patches and 20-30 centimeters..time for our friend

On increasing EN...hmmm spoke with our doc briefly about this and I know different docs have different opinions about EVERYTHING but he said EN isn't like a drug and increasing volume (assuming you are at the right minimum volume) won't help more with anything other than nutrition. That said, I would think if the added nutrition makes a child stronger than they will be healthier and their bodies will have the strength to heal but what do I know I haven't passed my boards yet :

What were his levels on exclusive EN? Has he slipped since adding back food? Maybe another course of exclusive would help? Just rambling thoughts here.

Yay that his results haven't slipped down and that he is feeling better!

When do you go to see doc?

At home blood tests??? Yay dat! The waiting and guessing is the worst!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
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Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
05-22-2012, 11:07 AM   #4
Tesscorm
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We don't see his GI until beginning of July for his next follow up. This will be his last with this GI and I am waiting to hear back from his new adult GI with a date for his first apptmt.

I don't remember his levels exactly when he was doing exclusive but they were definitely lower - much closer to being in the normal ranges. When we had an apptmt in January and his GI said that his Dec. tests had shown higher levels and wanted to retest. If the results were again higher, he was considering another 6 weeks of exclusive and then perhaps methotrexate. But, then the second round of tests came in lower, so we just continued with the status quo. So, you may be right in that a period of exclusive may certainly be more beneficial than just upping the dose. Poor Stephen, I know he wouldn't want to do another six weeks!

Julie (imaboveitall), if you're around, question for you... V never did 'exclusive'... to induce remission, was she at a certain dosage and was that dosage altered after a time period to a maintenance level? Just wondering if I could increase Stephen's dosage to the 'exclusive' level without forcibly adjusting his diet (ie. he may eat less just because he's feeding on the formula anyway...)

I did send Stephen's dietitien an email on another issue but haven't received a response yet... so will ask her this as well...
05-22-2012, 11:23 AM   #5
crohnsinct
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Good Luck Tess.

As for the Methotrexate...O has her appointment with GI May 31st although I don't know why...It will have been only 4 weeks since starting EN and we aren't pulling blood until next infusion on 6/6..maybe just to weigh and "look"?

Back to my thought...I know you asked me awhile ago why he switched from adding Azathioprine to Methotrexate...that is one of my questions to ask for you. Stay tuned.
05-22-2012, 05:08 PM   #6
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Wow, they seem to be good at understatements!! 20 - 30 cm definately doesn't sound like small patches. I have to say I don't think it would help inflammation levels increasing the volume of EN. Maybe exclusive EN would but it is always a bit more of a struggle. Glad he's feeling better, maybe he just had a bit of a bug?
05-22-2012, 10:23 PM   #7
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Yeah, I am really annoyed at what I think is not a 'small' patch! As Stephen's transferring to a new GI soon and I was told that, when he transfers, I would get a complete copy of his file, I haven't always asked for 'copies' of results - sometimes they sent a copy, sometimes just an email/phone call with the results. But, I'm pissed now that I didn't pursue getting copies each time and that no one ever made an issue of the amount of inflammation. IDK???, maybe 20-30 cm isn't that much???

Also, why don't they know if it's 20 or 30? Wouldn't an MRE be more exact?
05-23-2012, 08:06 AM   #8
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I'm not really sure of the accuracy with MRE I do know they told me C had 18cm inflammed using the CT and we got that same result 2 months later with an emergency CT. I was shocked by 18cm so I can imagine your feelings, in fact it surprised me when the GI didn't really go into detail about the report or exactly what we were dealing with beyond positive for Crohns. I hope you can figure out the optimum amount of EN to enable his GI tract to heal!! Sending good thoughts your way!!
05-23-2012, 11:41 AM   #9
crohnsinct
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We can bang our heads all day with the shoulda, coulda, woulda's...who would have thought to ask for copies of everything when you just want your kid fixed.

Have to say I am learning from all you guys. I never get any info. Just "looks good" "looks bad"...doc is a control freak about specifics...I will tell you what you need to know kinda guy. Probably better that way..saves poor google and my keyboard.

Exactness of MRE um Yeeeaaah? Sounds like a big difference to me.

Hang in there mamma July is coming!
05-23-2012, 12:01 PM   #10
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I always ask for a copy of any medical report - labs, x-rays, ct scans, colonoscopies etc. After they tell me what they have found, which is normally lacking in information, I simply ask for a hard copy of the report for my "medical file".
05-23-2012, 01:18 PM   #11
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No sense crying over spilled milk! But, have started mopping up! Called the Records department and requested the complete file (said I wanted the info before our first apptmt with new GI), called to set up apptmt with new GI (found out transfer hasn't been made yet - called old GI office to ask why?), and spoke with dietitien re EN.

Just to pass along her info her EN info in case anyone is interested...

- Having Stephen do one week or so of exclusive EN will not help in healing/lessening the inflammation, a longer time period is needed for that purpose (ie 6 weeks). However, if Stephen were having pains, bloating, other GI symptoms then a short course of exclusive EN would help in lessening the symptoms. As well, increasing his dosage will not help reduce inflammation.

- Something I found interesting... Stephen is currently on Tolerex and the dietitien has him on a concentrated ratio (compared to package directions), simply to reduce volume. His current maintenance dose is 1000 ml/night (750 water, 250 powder). At our last appointment, the nurse gave us a couple of tins of Modulen to sample (drinkable vs. tube only) but we didn't discuss mixing directions. As the Modulen is meant to be taken orally (altho tube can be used), she recommends following the package instructions to mix the formula. In order for Stephen to ingest the same calories, nutrients, etc. he will have to ingest double the Modulen volume (2000 mls). (I asked if I could concentrate the Modulen if he was ingesting it thru the tube but she preferred to not concentrate the Modulen.)

So, thought this might be relevant for those who are ingesting the formula through the tube and finding the scheduling a bit tough, switching brands may shorten the duration of the feed...

- Also, a bit trivial maybe but... I've read how healthy coconut water is and that it has anti-inflammatory properties, have tried to get Stephen to drink it but, picky as he is, it's been a no go... so... wondered if I could mix the Tolerex with some coconut water in place of regular water (also carrot juice - I was set to make his Tolerex into a carribean smoothie! ). But, apparently, NO... as it will change the formulation/composition, etc. of the formula.

And, just to add to my concerns... because I am stressed now, worried about this inflammation, what's coming next, still pissed for letting myself become complacent and giving the clinic too much credit and, now, he's going away for a 'grad' weekend on Friday! I know there will be some alcohol, unhealthy food, up at all hours! He's a responsible kid BUT... Ugghh!!!
05-23-2012, 02:18 PM   #12
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Hey Tess,

I would not consider 20-30cm as a small amount, particularly if it is closer to the 30cm mark. I think the other thing to consider here is if this inflammation is acute or chronic. Since his inflammatory markers continue to be raised but not excessively so then you would think it chronic??

I personally would go down the track of exclusive EN with inflammatory markers at weekly intervals and an MRI arranged at its completion.

Just FYI...I can't really compare with Sarah due to her untreated circumstances but Matt's total inflammation in his TI was 15cm.

Dusty. xxx
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05-23-2012, 02:42 PM   #13
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Its such a mess now... his final apptmt with his current GI is July 11. I doubt his current GI is going to want to change his treatment at this point (unless, of course, there was a real urgency).

It's going to take time to get an apptmt with his new GI... I don't know how long but I'm going with the assumption it won't be within a few days!

I'm not sure how I'm going to proceed here!?!? If I push for additional treatment with his current GI, I already know he doesn't use the 5-ASAs nor LDN (he doesn't believe either treats Crohns very well) and I don't want to move Stephen to Metho or anything else without having discussed the option of using 5-ASAs or LDN with another GI (who may possibly be open to the idea). I feel like I'm stuck!!

I think I will call the nurse again and request the weekly labs - I specifically requested the last blood tests because Stephen had been going through one of his 'off' periods, which has since passed. His labs may already be a bit better (although that doesn't change the MRE results).

Does it make sense that one nurse would say 20-30 centimetres because there were 'patches' throughout an area of 20 to 30 centimetres??? Opposed to the entire length of 20-30 centimetres being inflamed? Could that be the confusion between what the two nurses have told me?
05-23-2012, 02:45 PM   #14
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Sorry Dusty more questions...

Do tests indicate acute or chronic inflammation? which tests and how?

And, why would the MRE result be so vague, ie 20 to 30 cm? Wouldn't the MRE image be more concise?
05-23-2012, 02:57 PM   #15
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There could be skip areas Tess but it is also possible to have cobblestoning over that extent too.

I don't know that a test would necessarily show acute versus chronic inflammation, unless they say it is scar tissue, but rather comparisons between existing tests. So if the area is relatively unchanged from MRI/MRE to MRI/MRE then the inflammation is chronic. Of course if the area is extending then acute inflammation is taking place.

The only reason I can think for the 20-30cm is that often there is stranding into the adjacent tissue of the affected area. In other words changes are starting to take place there as well. Matt had 10cm of thickening and 5cm of stranding in the proximal tissue of his TI.

Dusty. xxx
05-23-2012, 03:17 PM   #16
crohnsinct
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Oh Tess! I can only imagine how you must be going out of your mind. No advice just hugs
05-23-2012, 03:31 PM   #17
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Thanks Dusty and Chronsinct!!

You know... it's been exactly one year (may 21/11) since he started the EN! I would just hate to have him go through all the same events (athletic banquet, his birthday and the addition of his Grad this year) not being able to eat again.

I just hate that there's always this shadow over our kids and then we have to ask them to make these sacrifices and face these challenges!!
05-23-2012, 03:50 PM   #18
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Oh Tess, I so hear you hun.

I know it is so hard to take deep breaths at a time like this but lets regroup for a minute. His markers are low and if Stephen is looking and feeling good then I don't think much will change until be sees the new GI. I think the crucial thing here is to get copies of the reports of previous MRE's and blood tests and make a comparison. If the MRE's are relatively unchanged then I think you have time on your side and can go with the status quo until you see the new GI.

While ever there is low level inflammation present you are bound to have glitches in both blood tests and symptoms and perhaps at times those glitches coincide with other events too...other illnesses, no matter how mild, exams, big matches and so on.

Dusty. xxx
05-23-2012, 03:55 PM   #19
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Sorry you're having to go through all this. Typical these things happen when you are trying to get him changed over to another GI! If he is feeling well in himself, then maybe you could just try not to stress too much (the operative word being "try"). Let him have his Grad weekend to have a great time, hopefully one weekend of bad eating will not affect him too much. Maybe he will be more willing to do the EN again once he has had his fun weekend.
Thinking of you!
05-23-2012, 08:35 PM   #20
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Hey Dusty, did you really hear me beginning to hyperventilate all the way across the pond?!?

But, you're absolutely right... deep slow breaths and regroup! He is feeling fine (EXCEPT! now he mentions he's had D-ish stools for a few days ) - no more back pain, not pale, eating well, etc. So, I'm sure you're right... if he has no other symptoms, I'll just keep watching...

And, yes, Sascot... will keep trying! Story of our lives, eh? Try, try, try again! Not going to stress him out too much before his Grad weekend! But, told him I am going to send him some plain, low fibre food and yoghurt he can have, if he feels he needs something 'lighter'. He probably won't touch it but, I'll feel better knowing he has some choices!
05-24-2012, 09:43 AM   #21
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hmmm, am waiting to hear back from his nurse but just had a thought...

His Fall results were given to me 'twice' - once the desk nurse called and said MRE showed 'small patches' but fewer/smaller than at the u/s, then I received an email from his regular nurse (which I'd forgotten about...) and her email said - u/s showed mild inflammation at TI and MRE confirmed continued mild inflammation at TI but small bowel clear.

Okay, this is the Head IBD clinic nurse and she seems very knowledgeable! so, I really can't believe she would say 'clear' if there had been 20-30 centimetres of inflammation. But, a few times in the past, she has used the wrong 'word', i.e. once referred to the mild inflammation in Stephen's rectum, when I asked when he began to have inflammation in the rectum , she said 'oops, meant small bowel'

I'm wondering now if she meant to say 20-30 Mm not Cm??? In which case, I can imagine that 20-30mm next to the TI could simply be referred to as inflammation at the TI?? And, explains why there seemed to be such a large questionable area - not 10cm, only 10mm.

Hoping this is the case...
05-24-2012, 11:03 AM   #22
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Ah special agent Tesscorm on the case...Good Luck cracking the code!
05-24-2012, 11:36 AM   #23
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Well, centimetres is correct

The nurse's reply today is:

The MRE last time did not comment on the length of inflammation. It stated there was a long segment of inflammation in the terminal ileal loops. The recent MRE stat that there is inflammation of the ileal loops , in the distal ileum 20-30 cm. Remember the small bowel is over 3 meters long , so 10 cm range is a small distance.

Doesn't matter how or what was said in the past but, I want to understand if it was me who misunderstood (so that I don't misunderstand again).

My understannding of the small bowel/intestine is:

Terminal ileum - the very end of the small bowel, in my mind, the 'edge' so to speak. If I'd had to guess at the size/length, I'd guess less than an inch.

Ileum - section of the small intestine leading to the TI with the closest section of the ileum to the TI being the distal ileum.

Jejenum - next section of the small intestine (moving up towards stomach)

Duodenum - section closest to stomach (usually referred to the beginning - I've gone backwards in 'definitions').

And, all of these - TI, ileum (distal and otherwise), jejenum and duodenum are all part of the small bowel.

So, I'm confused because her email (in the Fall) said "some inflammation in the terminal ileum. The rest of the small bowel looks good"

Yet, her email today said that the MRE in the Fall showed "there was a long segment of inflammation in the terminal ileal loops".

Can the small bowel 'look good' if there is a 'long segment of inflammation in the TI loops'?

What am I misunderstanding? Or was her Fall email misleading?

I hope this made sense???

Last edited by Tesscorm; 05-24-2012 at 01:12 PM.
05-24-2012, 01:28 PM   #24
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No real advice here, just . I hope you get some answers soon.

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05-24-2012, 05:35 PM   #25
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You have the anatomy down pat Tess.

The small bowel refers to full length of the that part of the intestines. So the duodenum, jejunum and ileum combined. The length of the small bowel does vary from person to person but an average length would 7 metres with the duodenum being approx. 35cm, the jejunum approx. 2.5 metres and the ileum being approx. 4 metres. There is no real length as such to the terminal ileum as it a descriptive term for where the small bowel junctions with the large bowel via the ileocaecal valve and caecum but it is used in a more general sense to describe the distal portion of the ileum.

In medical terms, if you start with the head, distal means the further away from that point and proximal means closer to.

Given that the small bowel is 7 metres long then it is very probable for there to be long segments of inflammation in the terminal ileal loops and the rest of the small bowel to be normal. It is not unusual to have this appearance as the small bowel folds onto itself, as you would have seen in images, so if one segment of bowel is inflamed it will inflame the segment that overlies it.

I think the confusion is not at your end Tess but with terminology not being used in its correct context. The words that should have been put in there but weren't were...u/s showed mild inflammation at TI and MRE confirmed continued mild inflammation at TI but the remainder of the small bowel clear.

Now I hope that makes sense!

Dusty. xxx
05-24-2012, 10:41 PM   #26
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Thanks so much, Dusty!! Your explanation really explained it all! Makes complete sense now!

05-24-2012, 11:29 PM   #27
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Tess,
I just wanted to say you guys are in my thoughts and prayers. I am really thinking you should try to push for an appointment with the new doctor that will be following him. Once you see the new doctor I am hoping you can get him to agree to let Stephen try LDN. It has been such a miracle for us. I know it will not work the same for everyone and that not every drug works the same for every person but I would encourage everyone out there to at least give it a try!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
05-25-2012, 05:41 AM   #28
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Dear me it's lot to take in. Who knew one part of us could have so many names!! I think they forget that some people don't know the anatomy that well - although all of us sure have to learn fast. Hope you manage to get something sorted soon!
05-25-2012, 02:33 PM   #29
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Kim - Absolutely will push for the LDN. Up until now, I wasn't in much of a rush (not that I had much choice as the GI wasn't interested) so I hadn't pushed it. But, now I'm feeling a bit more urgency given that he has lots more inflammation than I'd previously thought. And, for now, I am still more comfortable going with the bottom up approach I know the LDN comes with no guarantees but, what med does? If the new GI wants to add Pentasa, I'm fine with that... but would like to give LDN a shot before we move onto something else.

Sas - Amazing what we've all learn once our kids are diagnosed!
05-25-2012, 04:56 PM   #30
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"Makes complete sense now?" Um not to me! I am sooo confused. Will have to print out these explanations and really study. I feel like such a dunce and bow down to those of you wiser than I.
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