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LMAO!!!

As long as he's doing the EEN, no harm following those instructions letter by letter! :D I have no doubt he'll begin to relax about it all soon... after a while, S wasn't checking placement, wasn't using lubricating gel, wasn't drinking water with it, forgot guidewire a few times (which, by the way, IS noticeable when trying to insert!)... ;) And the tape he used to hold the NG tube... he'd cut so small (maybe easier to pull off?) that it was only about 1" by 0.5" (but it held!)

Did last night go alright with the 8fr? Hope so... :)
 
So it went ok with 8FR but the 6FR came in this morning. I had a rough night and took a nap, when I woke up C had replaced his tube and was checking placement. No fluid but he still hooked up and the formula started coming out his nose. He re-inserted and is hooked up now. I'm not sure why he hooked up two hours early but whatever.

He said he measured the new tube but also checked it by the old one so I hope it is not in his duodenum or something, ph was seven but he had acid reflux and heartburn earlier. I gave him pepcid.
 
He sounds like V. I wanted to give her a Rocephin shot once, (antibiotic) an old colleague of mine sent me some with a hypodermic, to avoid a dr visit. She wouldn't let me, said "it's probably illegal". My old doc pal who sent it said, "only illegal if you charged her; that'd be practicing medicine without a license". She too is a by the book type, an extreme rule follower.
Excellent that he's taking it in and out himself. Excellent.

Tape hint: there is a tape called "Coach tape" that is the only tape that doesn't irritate V's skin. Available in the bandaid section.
 
I understand that is hard not to feel overawed by the whole process Clash and I too have a child that is a stickler for protocol! Well in all things medical but it doesn’t extend to things like wardrobes as that is what the floor is for, you know where I am going here! :lol:

imaboveitall is right, in a lad such as C he won’t be left guessing if the tube goes down the trachea instead of the oesophagus. Time and familiarity will ease things for C, bless him.

Dusty. xxx
 
An update: C felt really well today. You could tell it in his demeanor. He packed up his pump, formula and supplies and went to spend the night at a buddy's house. He was so funny, it was like a role reversal, he approached asking me as if he was preparing me for the empty nest. He really tickled me.
 
:lol: That's great... I'm so glad it's all starting to work - right tube, feeling better, etc.! :D
 
Love it.
He was malnourished, poor boy. So many of these kids are, and it is just accepted or struggled with rather than just FEED THEM via tube.
His quick turnaround is just how V was back in the day. They need absorbable nutrition. No better way to get it than tube feeds of broken down formula.
He sounds like a well adjusted, sensible kid. I wish all the kids and parents of these underweight, undernourished children were as sensible.
 
Ok guys, anybody got tips for this issue we keep experiencing. We have the 6FR tubes and are doing the refrigerate tip but the tubes refrigerated or not keep folding in C's nasal passage. Once they fold once they seem to never go in without folding. It is driving us bonkers and going through all out supplies.
 
To be clear it is actually past his nasal passage. He says when he hits this spot he can feel the tube raise in his throat as it starts to coil or fold.
 
Ours is Corpak enteral feeding tube without stylet. If that tells you anything. We've got it back in the fridge but it literally coils or folds up. We've tried new tube, refrigerating, he has his chin to chest when inserting. We just don't know what else to do. We may have to switch to indwelling but the GI nurse said we'd have to change tubes once a week then.
 
Hmm..He swallows at the gag reflex, he says he is not sure if it has coiled or not when he swallows the water but he said to say it coils at what he thinks is the back of the nasal package at the large opening before the throat. So frustrating because it coils so badly it actually puts a bend or dent in the tube so then it continues to coil there at that bend.
 
I wondered if the soft palate may be the problem. It can be difficult to navigate a tube past this area.

I have mainly dealt with patients that have neurological and gag issues but when inserting a tube you can ‘feel’ when the tube has passed through the nasal passages and reaches the area you are talking about. It is at this point I tell the patient to start swallowing. This is well before the gag. Any hint of resistance I draw back and try again.

Perhaps earlier swallowing might be worth a try?
 
Thanks Dusty, we are refrigerating again then I will tell him to try that. Fingers crossed and thanks so much for the response!
 
And I was going to suggest he keep drinking until the tube in almost at full placement (I think that's what S did??). Also, when S first started, I held the glass of water and the straw in place, he used both hands to insert the tube and watched in the mirror. If C is not doing it this way, perhaps this will give him a bit more control to do as dusty said and draw back at any resistance.

But my offer stands, I can put the ones we hv (with guide wire) in priority post tmrw for you...
 
When they taught him at the hospital, were there any problems inserting? Is he doing it in the same position now, ie sitting vs standing? Also, and I don't know if this helps, but as chin to chest is a 'better' position, can he try moving his neck slightly when he feels it at that spot? Maybe needs just needs to 'feel' around it???
 
When the tube was inserted initially at the hospital C agreed to let a student nurse do it, so there were problems but it was her first time. On the last day the training nurse just guided him on how to insert he tried several times and couldn't get it but then I tried and got it the first time so that was basically it since the nurse said it would take practice.

He is using the same technique as he did in hospital but I don't think he drinks water the entire time so maybe we could try that. I hold the straw and water in place for him. Maybe having him move neck will help to. I would say yes to you mailing the tubes with guide wires but I feel certain he won't try them unless there is a nurse showing him how. It is really hard to get him to deviate from exactly what he was shown. I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate.

Thanks for those tips I'm going to read them to him so maybe he will be more open.
 
Is his ped or a walk-in clinic nearby? Would it be possible for C to stop by and have the nurse help him for the next couple of days? It seems wrong for you/C to have had so little instruction and support in starting this... When S came home from the hospital, we had a nurse come every evening to help/watch him insert the tube for a few days and then she continued coming weekly, then bi-weekly, then monthly - continued to come monthly until S finished with the EN!! After a little while, thought it was absolutely the wrong way for the medical agency to spend their money but agency could only continue to cover cost of formula as long as we had a nurse visit at least once a month. :ywow:

Re sending my tubes... actually, after posting, thought our tubes might not fit/attach to the bags you use anyway??

I hope he's managed to insert the tube by now. :ghug:
 
Second that clash. We had a home health care nurse come out and help with Grace. Can you ask the GI for a referral to get one?
 
I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate.
Click to expand...

:eek2: :lol: Now that is literal! C, you have to bend and be a little flexible mate. :wink: Not as much as the tube mind but just a little. :lol:

It’s a bit like Goldilocks…

Room temperature can make the tube too pliable

Freezer can make it too stiff

Fridge is just right.

Above all else…Good luck!

Dusty. :heart:
 
So we just tried after refrigerating. It took two times but he says it is in, ph below 5 and he is hooked up to pump. So now we wait if it is folded then about 5 minutes in the pump says pump clogged downstream and then we pull out. Every time we do this, when he pulls out it is literally folded into itself. Dusty I think you are right about the palate part because the end catches there when the fold comes out his nose.

I am going to call and report all of this to the GI nurse tomorrow. I don't want this hassle to deter C from this. So far he is determined and keeps trying because he says it has to be done but I know that could waver as frustration builds plus it is a bloody form of torture in my opinion. Tonight I need the wine and some nerve pills!

He has a GP we could see if they could insert but you should hear all the freakiness I have gotten from med professional s in the area that hear he is putting it in and taking it out daily. It's like I am speaking a foreign language!
 
Oh and Dusty, yes it was quite strange for C to say " No, I don't want to deviate from what Dusty told us." I mean I know I've put you , MLP, Tesscorm up on the CD pedestals but lordy it didn't take long at all for C to put y'all there!

I said "Well I read a nursing site that said a quick set in the freezer is what one nurse swears by." His retort, " That was one nurse, Mom not the committee, I am going with their recommendations." Ha!

Btw, Tesscorm he tried the neck move and felt that may have been what got it past.

As always, thanks guys for the invaluable support and guidance! You all make this seem so much more achievable and keep me out of the corner plucking out my eyelashes!
 
LMAO!!! Hey, whatever it takes!!! And, can I bring that pedestal here for a bit... would love my hubby and kids to see me on it! LMAO!!! Then maybe they'd listen to me for once!!! :yfaint:

But, so glad it's finally worked! :thumright:
 
Haha girl I will get right on that but if it is anything like my house all the pedestals in the world won't get them listening to me around here!

Oh one more thing, the bcc spot my mom had is healing nicely and she has been given some "chemo cream" to apply, with px coverage it was still like 184.00$ a tube! But whatever it takes! She will stay on relocate because her SED rate/RA is controlled so well with it and MTX.
 
In Clash’s house…if the corner is a rockin’ don’t come a knockin’!
wine.gif


Well done C and Mum! :applause::applause::applause:

Whoa! :yfaint: But good to hear your mum is doing well, bless her. :heart:

Dusty. xxx
 
You need tubes with a guide wire.
When V tried without it, she encountered the same issue.
I too would happily mail you some but V's are 8fr. Also MUST DRINK the entire time.
 
Actually maybe 8fr w/guide wire would be easier for him, maybe the difficulty is from the softness not the size. PM me if you want me to mail you some, I have with and without weights, sealed in package.
 
The new tubes with stylet should be in hopefully tomorrow. I have a call in to GI nurse about how to use these. I've talked to C about it and hopefully it will go smoothly but I may have questions for all you guys. Btw, before hospitalization on our scale(some type of Google fit or some tech fangled scale) C was 111 now he is 119.1. He is so funny he kept weighing yesterday until he hit 120, I told him we were only counting the morning weigh in but he hit 120 before bedtime and was ecstatic.

Rheumy appt at 4 today.
 
UPDATE:

Just got back from the rheumatologist. She feels his knee and ankle joint pain is a type 1 peripheral arthritis that runs concurrently with active disease in his bowel. Neither of these are flaring since the first week of EN and they have always ran with his flares.

When doing the physical exam she pressed on a spot in his lower back that sent him jumping from the table. After the exam she explained this was another type of EIM, that was spondyloarthropathy, but not AS. But she also said that the result was the same, fusing of the spine. She said he had great range of motion and she felt no fusing had occurred. She did an xray and blood work.

She changed his pill form of mtx to injection and upped the dose. She said that mtx was great for joint pain but not necessarily spinal issues. We are starting here until she can collaborate with GI.
 
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That's what both my girls were first diagnosed with - juvenile spondyloarthropathy. Now my older daughter's SI joints are fused, and my younger one's are beginning to fuse so they both have been diagnosed with AS.
Methotrexate helped them both a LOT, and Humira/Remicade have helped their spinal pain. Interestingly, both responded much better to Humira than Remicade.
Good luck, hope he starts feeling better soon!
 
Thanks Maya142, the first rheumatologist we saw just felt it was type 1 peripheral with his joints and didnt really address his back. I really felt this one was thorough on initial visit.

She was very upfront with C(adult rheumatologist not ped) and honest with her answers for him. I thought I would get a fight on the shot but not yet. It may be a different story on mtx day.
 
The shot isn't really painful, if that helps. It's a tiny needle. Both my daughters got nauseous with the pills, so in our case they were relieved to go to the shot.
The Spondylitis Association of America http://www.spondylitis.org/about/undif.aspx
is a really good and informative site.
Sorry to hear that C has another diagnosis but hopefully treatment will help and he'll start feeling better soon.
If you have any questions, let me know! I've spent many many hours researching ;)
 
She has also said he must swim for 30 minutes 4 times a week that it was the best thing to keep range of motion and help with the joints. He didn't have to tackle it like he was training for the Olympics but even casual laps would be beneficial. I've got to put a call in to the college wellness center as they are the only place in town with an indoor pool.
 
I'm hoping the shot goes well, it all seems to be piling up. C has been go with the flow on all these changes and said he would do the shot if that was what was needed but I know all the trials of the last couple months have to be weighing on him. Thanks for the info Maya142!
 
Also check for local aqua clubs - most have swim clubs which have practices every day of the week for kids from ages 6-18.
This way he could swim with older kids.
DS was also prescribed water therapy but since he already swims competitvely in a swim club that part was easy to do .
DS can tell a big difference in his joints if he takes a week off.

Mtx shot was not hurtful when DS was on it either .
Just watch the yellow staining of the liquid if you wipe it from the skin :)
 
Thanks My Little Penguin. I talked with the wellness center at the college and C is not old enough for a membership. The director said that I could contact the Rheumatologist and have her contact PT with the local hospital and px swim therapy with them as they use the college indoor pool. It is the only indoor pool(actually it is two indoor pools one heated one not). I asked about aqua clubs and they only have a group of little swimmers that are learning how to swim. All of the swim teams use the rec pool which is outdoor. We have an outdoor pool so no need to use that.
 
Sorry to hear about the arthritis for C. Does C shower in the mornings? We were told that's the best time of day to help the muscles.
Also Grace's PT aqua center has open swim hours for people to use the pool but don't need a therapist help. But I think you have to have at least one therapy lesson in order to do this. You might want to check.
 
This pool is at the wellness center so operated by the college. They allow PT to do therapy there without membership and age restrictions, otherwise you have to be 18 and pay 50.00 a month membership fee.
 
If you do manage to find an indoor pool, even if C doesn't feel up to swimming, see if you can convince him to go anyway. Just being in the water helps my daughters, and I find that once they're there and in the water, they loosen up and are able to swim a bit.
I worry a lot about fusion (particularly since both of them are already fusing) and exercise is the best thing to keep them mobile. It's really hard though when they're in a lot of pain.
Poor C, he has so much going on!
 
What speed did your children have the pump set for? I know nothing about this but thought C's was a little slow when we started. Now the teenage boy has kicked in and he is constantly upping his speed. It hasn't given him any problems but should he being doing this?
 
So does it correlate to age or weight or anything? And is there an optimal speed or a speed where things aren't absorbed. I know these may be goofy questions but since there is a copay with this formula for us , I want to make sure we are absorbing everything! Haha
 
Grace GI dietitian arranged her amount. Does his GI have a dietitian?
Grace would get nauseous our vomit if the feed was to fast.
C's body should let him know if he can tolerate more or less.
 
C has a nutritionist at the GI office. I felt if he ramps it up too high it will make him nauseated and that would be the indicator to slow it down. I could call the GI office but was hoping to get a query on here first. I feel like I've been calling the GI everyday here lately.
 
Under my avatar is a support group for n-g tube. Lots of older people on there. They could give you an idea of what amount they use.

Sorry that's all the help I am.

How did C do last night with the tube?
 
He did great but hasn't removed and replaced just flushed since we are still waiting on tubes with stylets.
 
I wouldn't let him keep upping the pump. I would definitly ask what rate is appropriate and exactly how much he should be getting over what period of time.
 
Farmwife, he goes to a flex school. It is a private school that has a set up for independent study. He reports to school on certain days to take quizzes, tests or present projects. Each week he gets his assignments and can choose to complete them at home if he is unwell or in class. If he is unwell he can go in during independent study to have his proxy(teacher) explain any material he may be having trouble with. When he is doing well he goes to class like any other student.

Kimmidwife, they did give us a set rate but said it could be adjusted as he could tolerate and to fit his schedule ie. not having to get up in the middle of the night to fill bag with more formula. They just didn't give a top out number.
 
When S left the hospital, he was running pump at 200ml/hr. They told him he could gradually increase to 250 or 300ml/hr, as he could tolerate (ie nausea). We were told 300ml would be max he could run at. S played around with the speed a bit and pretty much settled at 225-250ml/hr. He did run it as high as 275-280ml when he was in a rush (ie when he was on 'exclusive' EN so volume was larger, so more time needed...) but, I think he found anything beyond 250-275 was not as easily tolerated...
 
Thanks Tesscorm, that was exactly what I was looking for. C started at 100 in hospital after a couple hours they moved him to 120. The goal was 140 while in hospital but we were released before the scheduled rate increase. The doc wasn't worried, wanted him at 140 but any tweaking upward was up to us and what C could tolerate. He is at 160 now and is having no issues. But just from t reading on here I thought that was low compared to others. Just wanted to see what ranges worked for others near his age.
 
Sounds like the rheumatologist was good. Hope the shots go well. Swimming is great for joints, although if he gets bored, I was told walking/running in the water is also one of the best exercises you can do.
 
Oooh my favorite thing about the Rheumy is she has patient portal so I can see all the labs and stuff the next day! Yay me! On that note, I just went over the labs she did and I a question for the committee.

As a note on all the labs at the bottom it states:
labs stable on HCQ except new onset anemia. repeat CBC in four weeks.

So I looked at all the labs and everything seemed to be in normal range. Am I missing something here? Isn't Hemoglobin that gives an indication of anemia? What are others? Thanks in advance.
 
Do you have all the numbers with reference ranges of his Iron Study. I believe that's what it's called. Right Catherine ?
 
It doesn't look like an "iron study" was done as I don't see ferritin as one of the tests but was interested in what would tip off a doc to anemia in the CBC, since that is the lab the note is posted on. She also did CRP and SED and chem panel I believe(the one with potassium and all)
 
Sometimes you can only see the labs the doc released so even if the doc reviewed them but didn't release them they won't be in there yet .
I would think iron studies as well .....
 
Hmm... I put a call in this afternoon about the note but it'll probably be tomorrow now before I hear back. All the tests ordered on our lab order sheet match up with all of the tests displayed online and it doesn't indicate she was doing an iron study. Oh well, any idea what HCQ might mean?
 
I don't know what HCQ means but did she post his hematocrit? That along with hemoglobin and iron studies can indicate anemia.
 
Yes they did post post of those. Both weren't close to low. I'll look them up and post them when back on my laptop.
 
Clash

When you compare with previous blood test, can you see any numbers which have dropped or increased?

I know there are other number which they look at, but we use different name for them.

If they are saying heading to anemia, you would normal test iron, B12 and folate. They can all result in anemia.

Sorry I at work.
 
That is a long list, any in particular you are thinking? I'm on my mobile so I'll have to wait til I can get to my laptop. There were 4 sets of labs , I do remember that. It was CRP, SED, CBC w/differential and Chem. Theonly number even close to the low value was sodium on the Chem panel. The rest of the numbers were solidly in the middle of the range if I remember correctly.
 
It won't let me copy and paste the numbers from the report. I don't have his last blood work or the time before. One was in the hospital and the other I haven't had sent to me. There are 2 more that are at the top of the range:

Baso% is 1 range is 0-1%
Absolute Baso is .1 range is 0.0-.1K/uL

others are
RBC 4.84 range 3.80-5.70MIL/uL
MCV 84.9 range 78.0-98.0
WBC 9.5 range 4.5-13.5

there are probably about 14 others and then also the Chem panel.
 
We just picked up C's MTX in injection form. He was with me and I could tell the shot was not sounding like a good idea to him anymore. So I told him we could go by the GP and have them observe or give it to him the first time. We get in the car and while I'm entering all my purchases he pops open the syringes draws the.8ml and gives himself the shot! He said it didn't hurt at all.

Now we are back home and he came in my room and asked could he borrow my heart rate monitor because his heart felt fast. Lying down his heart rate was 113. I checked it 20 mins later along with bp and bp was 130/80 heart rate 104 lying down. Wonder if this is from the shot?
 
We are pushing fluids, his heart rate is still above 100 lying down and around 120 standing. I'm really trying not to freak out since it reminds me so much of my postural orthostatic tachycardia. I'm thinking(praying) this is dehydration. We are pushing fluids but will have to go to ER if don't come down.
 
We've never had a high heart rate with the mtx shot (and my daughters have been on mtx on and off for 6 years) but I suppose anything is possible?
Really hope he starts feeling better and glad the shot didn't hurt!
 
Just a suggestion- calling the on-call doctor might be helpful - he/she could tell you if this is common or if you need to go to the ER.
 
The GP, Rheumatologist and pharmacist all feel it is not related to the MTX, the Rheumatologist said push fluids and sodium and if it doesn't decrease or gets higher this evening then go to ER the GP said push fluids and sodium and if it doesn't come down by morning call him, if it goes higher go to ER.
 
He is not reacting to it at all really. I mean he says he feels fine he can just feel his heart is racing. He has been doing his homework while drinking Gatorade. He absolutely does not want to go to the ER so it is going to be a battle if he has to go. Ughh.
 
Ds has had high heart rate before- last year- never did figure out why- we were told less than 150 was "ok" but he is a lot younger.
He was in the 120 to 140 at the time FWIW
hope things calm down soon.

Never was an issue while on MTX
 
Clash V's HR always races when she's flaring.
Of course also jumps up when changing position; your boy may be a little POTS-y.
His labs are great. So are V's even when she's sick.
They sound similar in presentation. Nothing you've described sounds scary to me, I see it all the time over here.
 
I talked to the rheumatologist nurse about the note saying "new onset anemia" and she said although everything was in the normal range the doc is real particular(nurse's words ha) about it and that is why another CBC in 4 weeks. Still not sure what indicated the anemia since the hemoglobin, hematocrit and RBC were normal as were all of the other values but oh well.

Not sure what to do about this tachy, he is at 100-105 lying down and still around 120 standing. He says he feels tired like he could go to sleep but other than that fine. Of course that is the opposite of normal since he hasn't been sleepy at 9:30 since dx, more like after midnight.
 
We must've posted at the same time, imaboveitall. I asked C if he had ever felt his heart do this before and he said only after a running practice or something. His labs looked really good to me too but yeah his labs never have told the tale.

Oh he is 122.9 this morning so still gaining weight!
 
Hey guys I just had a "duh" moment. C has had high heart rate before it was what led to having his ferritin levels checked even though hemoglobin was low normal. It is also what got us sent to a GI. He was anemic at that time. He had low normal HGB but deficient ferritin. I'll call the GI today.

So if the rheumatologist is right(new onset anemia) which seems a good call now with high heart rate and past experience can I assume C is losing blood due to a flare? What are other factors you all have experienced if any?
 
My daughter had high heart rate together with vomiting, She felt sick, the vomiting went away in a couple of hours but She had to stay three days in the hospital due to heart rate not coming down. Nobody new why. All test were normal. I hope C feels better soon.
 
We had a trip to er with severe pain and vomiting. The nurse tested her pulse and it was 129. It was a very busy night and the nurse gave her oxycodone in the waiting room. This led to her third course of pred.

For your information Sarah had ferritin level of 183 prior to dx with falling hemoglobin levels due to iron deficiency anemia. Although her ferritin was reading high her actual iron level were close to zero. All other iron number were low.

When inflammation is present ferritin can act as a marker of inflammation.

http://pubs.rsc.org/en/content/articlelanding/2014/mt/c3mt00347g#!divAbstract
 
We were told the high inflammation for a long time depleteed the iron stores in DS so now that the inflammation was down the ferritin level was reading "true" showing just how low his iron stores were .
DS has been on an iron supplement for a few months .
 
I completely forgot GI closes at 12 on Fridays so I won't be hearing back from them until Monday. C's heart rate is still elevated but more noticeable when he is up and moving. I'm hoping the GI will grant an iron study. Always more difficult to get when his hemoglobin is normal or at least that was the case with GP before dx.

C isn't feeling bad and still gaining weight which is great. He is about 2.5 weeks out from what would've been his next remicade so as that time draws closer I will be anxiously awaiting any symptoms.
 
Things really seem to be piling up. I know I've mentioned my husband's nieces before, two of three sisters have refractory Crohns disease. The oldest who has failed every med and had several surgeries is facing yet another surgery. She was dx'ed as an adult in her early twenties so has always seen an adult GI(several in fact). My husband said early on after dx she would spend months out of every year in the hospital. The only med that would take her symptoms away was steroids and they were given frequently and for long periods of time.

Her last surgery she was so immunocompromised that infection led to sepsis and they lost her twice, she was put in a drug induced coma and spent months in hospital. She now has a bag and very little colon left. She is such an angel and such a good soul. Through her illness she has been so compassionate with others. She told C and I both when he was first dx'ed not to look at her as a standard case because she was extreme and nothing to measure by.

This surgery next week will be a hip replacement surgery(she is barely 30 yo if that). She has avn some type of vascular necrosis caused by all of the steroid use. Due to her state of immonsuppression the surgeon has told her if she does get infection from surgery his option will be to remove the joint replacement for six months to clear infection then replace again. My heart is just breaking for this sweet child. Through all of this she is more concerned about her sister health with a new med than what she faces.

Then, of course there is that little voice in my head that says, "Oh no, the med that was supposed to keep my kid on the up and up , with normal life experiences and no disease activity has failed." What does his future hold. Sorry to be so down, it just seems to be coming from all directions right now and my brain is pretty much mush.

Oh on another note, C's xray came back and all looked good. No inflammation seen nor damage. I'm notbsure what this means for the spondyloarthropathy dx, any ideas? I'll call the rheumatologist nurse Monday but thought others here may have some experience.
 
The x-ray being normal doesn't really mean anything. An x-ray needs to show sacroiilitis for an AS diagnosis, but it can take 7-10 years for that to show on an x-ray. Just because the x-ray is negative it doesn't mean he doesn't have spondyloarthropathy.
My girls both had MRI's done that show inflammation in their SI joints. They now have x-rays that show sacroilitis and that's why they've both been diagnosed with AS but intially they both had normal x-rays.
 
Thanks Maya142, that is what I thought. The report mentions metal zipper covers sacrum, so he apparently had his shorts on in xray. I'm assuming this would be an area she would want to be able to visualize as well.

The fact the report said no inflammation shown surprised me since when she touch his lower back in the physical exam he literally came off the table. Should I push for an mri as well? Sorry, I'm just new to this aspect of joint pain and I'm not sure what I should request to ensure I stay on top of the disease.
 
You could ask for an MRI but the fact is, it probably won't change his course of treatment, right? I'm assuming since his IBD is a lot worse than M's, he won't be allowed NSAIDS and then Remicade should be taking care of the pain. Anti-TNFs (Enbrel, Humira, Remicade, Simponi and Cimzia) are the current best treatment for spondyloarthropathy. Stelara (IL12/23) is being studied. Studies show that Methotrexate doesn't help axial (spinal) pain but both my daughters are in much less pain everywhere (including their SI joints) when they're on it.

There is some evidence that Anti-TNFs reduce the odds of progression, so it would probably be best if he stays on one but I know that depends on his Crohn's. If steroids don't help him there's not much you can do in the short term. Heat, swimming etc.

The only thing the MRI would do is show you if there is any damage/inflammation that doesn't show up on the x-ray. An MRI of the SI joints (pelvis) is quite short 30-45 min, but my daughters have a hard time lying on their backs because of the pain, so they hate MRIs. I know C has a lot of other stuff going on, so not sure if you want to make him do one more thing, you could always do it once he's feeling better.
 
Thanks Maya142. It really helps that you said all this. It validates what his rheumatologist said, she also explained that mtx wasn't necessarily effective for the spine. I think she would prefer C be on an anti tnf but he complained of the back pain throughout remicade and it was also not keeping his CD from progressing.

The last from the GI was if C is flaring with EN and mtx at follow-up then he feels surgery is warranted. I guess we will go over all of this at the GI follow-up and the rheumatologist said she would wanted to be involved in the follow-up to give her opinion on where C is with the arthritis and how she feels it should be managed. So I guess I'm just driving myself crazy in the holding pattern right now.
 
Have you asked about Stelara? Even if he does have surgery, he'll need a maintenance medication, right?
It would work for both his joints and his Crohn's. I've heard very good things and it's what I think we'll try next if Humira does not work for M. Like for C, anti-TNFs help her, but not enough. She's been on Enbrel, Remicade and Humira (twice) so I think we're just about done trying them. She has done much better on Humira than any of the others, so if you do go back to anti-TNFs, don't lose hope!
Sending hugs!
 
I'm going to bring up Stelara. My husband's younger niece was trying to get on stelara for her CD but in the end started tysabri. But she had one GI that was very positive about stelara and is still hoping to get her switched.

Thanks so much for giving me your daughters' experiences and helping me through all this new data, I so appreciate it. I hope both your girls find the meds that will give them freedom from their pain!
 
Ugghh, I am so sorry you and C are dealing with new concerns! It's no wonder you're feeling down and frustrated by all of it! :ghug: Easy to understand how your niece's situation can weigh on you. But, remember all you've seen here... all our kids have been diagnosed with crohns but all their situations are so very different, their responses different, etc.. And, circumstances also change - how many have been here when things have been rough and are now away because they're off enjoying good times! C is going through a rough patch just now but he'll hopefully find his miracle treatment soon and be feeling much better.

Remicade is not everyone's miracle drug and may not have been C's but that's not to say the next treatment choice won't be! But, sending lots of hugs because I know, until you see the actual improvement, it's hard to relax. :ghug: :ghug:
 
Thanks so much Tess, my brain knows this but you know the panic sets in and all goes haywire! My brain just stays on overdrive. But hey the tubes with the stylets are in and C can work 'em in in seconds so that is no longer an ordeal! Thanks for all your tips regarding EN, they have been lifesavers!
 
Yep, I absolutely know 'haywire'!! :lol: I hope you can get some guidance from the GI on Monday.

I know nothing about the spinal issue but do hope it turn out to not be a worry. :ghug:
 
Yep bug hugs your way
Btdt on the panic...
Thought we were out of drug options for DS due to his age .
But things turned out ok .
I am glad your Rheumo wants an opinion on treatment .
The two specialities working together has really been a blessing for DS .
Good luck
 

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