Growing up, transitioning to adulthood and dealing with crohns

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I'm confused is Caitlyn on LDN and Entyvio and MTX?

M actually refused to try LDN because it stops narcotics from working and she does need pain meds often.

I hope they figure out what's going on with Caitlyn soon and that they are able to get her pain under control quickly.
 
Maya and MLP,
Yes she is on all those. They took her off methotrexate two weeks ago. We just heard they saw something on her X-ray. A shadow near her kidney. So they are thinking possible kidney stone. I think I am going to discuss stopping the LDN with the doctor. The thing I like about the LDN though is it boosts the immune system and when she is on it she rarely gets colds or sick and if she does get them they go away very quickly.
 
Hoping it is something "simple" like a kidney stone that will go away soon. Really painful poor girl! Fingers crossed they can get the pain under control
 
Oh poor Caitlyn!! Kidney stones are miserable. I hope the pain meds kick in and she feels better SOON.
 
No results still on the US. She finally pooped so hopefully we can get the results of the Cdiff tomorrow. Pain meds still not really working.
 
Did the BM bring any pain relief? Your poor girl. Tell her we're all rooting for her! I hope she gets some relief soon.
 
Hi All,
So here is the latest, the c diff was negative surprisingly. The Gyn Doctor just came after we have been waiting all day for him and he said she has a 3 cm ovarian cyst that is not ruptured with a small amount of free fluid around it(this is very common) and he highly doubts this is the cause of her pain. We are stumped. Caitlyn has been miserable all day and insists they send her home. We are waiting for the GI Doctor to come. Even if they decide they want to do an MRI or something else we figure we can bring her back and do it outpatient tomorrow. I can't stand to see her cry anymore.
 
Also she does have a small kidney stone but it is in a place where it should not hurt at the moment and is probably just an incidental finding.
 
Oh poor Caitlyn! Are they giving her IV pain meds? Anything that'll give her some relief? I would try and get her to stay - it doesn't sound like she can be at home right now (but I know how stubborn teenagers are!). I know they did scopes recently but it sounds like an MRI is a good idea.

Have they tried a TENS unit? Or switching the Elavil to something else?

M also had an ovarian cyst but they didn't think it was causing pain either. Sending hugs!!
 
Sometimes it's better for the docs to observe to figure things out
Has behavioral medicine stopped by to help her cope with the pain using non medicine techniques ( used this for DS and pain from injections of humira ) made a huge difference once he felt like he was in control
 
Sending big hugs. I wish sometime thing just worked for her - seems like Entyvio just takes forever :(. Will be thinking of both of you tonight :ghug:.

Have they had pain management or the inpatient pain team come see her? They almost always visit M when she's in the hospital and that way if one pain med is causing trouble, they can brainstorm and come up with something else.

When M had her GJ tube surgery, IV Dilaudid made her very dizzy and knocked her out for hours, so they were able to switch her to Morphine. She's been on many opioids and some work better than others for her. I absolutely hate to have her on pain meds, but I hate to see her cry and writhe in pain all day too. I really really hope they can find something that helps her.
 
I know Maya. No they did not have the pain team see her. I don't even know if they have one there!
Anyway they are discharging her home. She is going to go for her entyvio tomorrow and then we will see what happens.
 
Your poor girl! It's just too much. It is so trying when they cannot find the source of the problem because then it is difficult to feel hope. Is there a plan as far as more testing? MRI's? There has to be SOMETHING that is causing all the pain!! Do you know what the time frame for determining Entyvio effectiveness? I hope Caitlyn feels a little better being at home and that they get to the bottom of this soon!!
 
Kim: Here is a video on Entyvio. Take home point is that for CD it takes quite a while to induce remission BUT once there it is a good maintenance drug. For this reason the doc in the video suggests steroids as a bridge therapy.

Did the docs in the hospital run an FC test or any other testing to check the more obvious IBD reasons for her pain? Seems that would be the first thing to check in an IBD patient presenting with abdo pain. But I'm just a mom so what do I know?

http://www.youtube.com/embed/PUBxVFxCEqM
 
Crohnsinstinct, they were supposed to do a fecal calp. I hope they did it. Meanwhile they let her home late last night and this morning she is back having the entyvio.
MLP,
We have done that on the past may have to do it again.
Still don't know what we are doing about the pain.
 
Does Caitlyn have a pain management Doctor? If she does, I would let him know that she is in severe pain immediately (and that she was admitted for it). He can probably figure out something for the interim while they work on finding what is causing the pain.
 
Poor girl. Just because they think the cyst or stone "shouldn't be causing pain" doesn't mean they aren't. When Amy got her appendix removed they only found mild inflammation that shouldn't cause symptoms but once it was gone so was the pain. So sorry they haven't managed to help.
I am trying a pain patch called Actipatch. Don't know if you get them in America. It's like a miniature tens type unit. Amy says it helps her a bit. I could always send one if you wanted
 
Maya,
We saw him only once he is so far away. I need to look for a new one for her. it is really weird but she woke up in no pain at all this morning except for this weird headache she has had all week long that didn't want to go away. I can't figure it out. We did figure out one mystery though, she was acting very strange in the hospital. She kept crying and was acting odd. We found out they had given her Ativan without telling us. She can't take Ativan. They once gave it to her right after she was diagnosed and it made her hallucinate and made her crazy and it lasted a few days. I was so upset they did that without telling us.
 
I think for someone like Caitlyn who has so many issues with pain, a pain management doctor might really help. If she is 18, she can see an adult pain management doctor (adult pain management doctors might be easier to find!).

My younger daughter sees a pediatric pain management doctor who is wonderful and my older daughter sees an adult pain management doctor who is also wonderful! We've found that pain management for adults is focused more on medications but is still incredibly helpful. M sees her pain management doctor every 4-5 weeks.

Remind me, besides Elavil has she tried any other meds for pain? Lyrica? Gabapentin? Cymbalta? Savella? Effexor? There are a whole bunch! M has tried Gabapentin and Nortriptyline (which is like Elavil) and is now starting Lyrica. S has been on Cymbalta and Elavil.

I'm SO SO glad she's feeling better. I hope it continues!
 
Caitlyn is feeling much better this morning. Both headache and abdominal pain are gone. I am wondering is there any way the headache and abdominal pain are related in some way and were some sort of abdominal migraine?
 
Yup, N had migraines since he was about 4 years old. Diagnosed with CD at age 14. Once the CD was brought under control he stopped getting migraines! I'm so glad she is feeling better!!
 
MLP,
Everything I am reading says they don't get both a headache and abdominal pain together. Trying to figure it out.
 
Pre diagnosis they thought Andrew might have abdominal migraines. They tried Pizotofan for that. Hope her pain stays away now
 
Thanks Sascot,
She is feeling better today, fingers crossed.
MLP,
I am trying to find her a neuro/pain doctor.
 
Today we were supposed to go find out the test results to see if two of our other kids possibly have crohns or if it is probably not crohns and something else. Luckily the appt was cancelled and I get to keep my head in the sand for another week! 😝
 
^^^ yeah that
Since genetic markers wouldn't be helpful since they have a sibling with crohns

And I don't know of a simple crohns specific test except a colonoscopy
 
MLP,
They ran a bunch of blood tests and a fecal Calprotectin. The fecal calp. I think is the most accurate of all they ran though I know that can be negative sometimes too. The next step will be colonoscopies for the two of them depending on these results.
 
I agree re Fcp. Do you have a patient portal you can check? Either at the hospital or lab? How long ago were samples handed in? I know with t they called me as soon as results came back. No sense calling me in to say high let's scope. Maybe if you were new to all this but second and third time around?.....
 
There is a lot to be said for not knowing!!!! Are the kids having many issues ? I imagine the appointment is to discuss treatment plan for the kid's symptoms whether the results are positive or not. I do hope the results are negative and there that it can be a quick fix!!!
 
CIC,
No patient portal and they never call with results. The tests were done two weeks ago. My older daughter of the two has had a bunch of testing before this and so far all negative but he did a new test on her that has to do with the way the body digests carbohydrates. I had never heard of it before so I am really curious to see how that one comes back.
http://www.allinahealth.org/CCS/doc/Consumer_Lab/49/150049.htm
 
Bummer! You are a better woman than me. My head would have exploded when I got the call about the cancellation and the one week delay!

Interesting about that other test. T had something similar done but after dx. Testing for FODMAP issues. Maybe if she has FODMAP issues they will test C also and that could be an answer to her issues as well?!

Either way, I hope the tests give you some answers and clear direction.
 
My daughter is having a new symptom, attacks of severe random abdominal pain. They only last a little while and then go away. Anyone else's kids have this happen?
It started about three weeks ago. The first time it actually lasted several days and she was hospitalized for it but all the labs they did were normal and then they sent her home without any further testing. Since then it has come and gone lasting an hour at most.
I don't know what to make of it. Today she keeps getting it on and off. It is very severe when it comes.
 
What is she eating??
Doesn't she have gastroparesis
That can cause abdominal pain

Ds abdominal pain was severe and then random
Once we did elimination diet we found triggers and things weren't nearly as random as we thought

His started out of the blue last thanksgiving
Still working out other causes with GI
 
Another thought - partial blockages? Has she had an MRE recently, I can't remember?
Sending HUGS!
 
Sorry to hear that. Not sure what it is, but when I think of intermittent severe pain I immediately think of something getting 'caught'/stuck on and off. Maybe she has a kidney stone or a little blockage that food gets stuck in for a while till it works through. The only other thing I can think of is a kink in the bowel maybe twisting and straightening on and off
 
Jae has been having these too, the first time she ended up in the hospital. Jae's may be related to her prednisone induced constipation, but she can have alternating constipation and diarrhea and still experience it.
 
Pilgrim and ronroush,
They would probably detect that with labs right?
All the labs they did were normal. MLP this is different then the gastroparesis pain. Maya and Sascot partial blockage is exactly what I am worrying about.
I called the doctor today asking if they can order an MRE and as is usual for them no call back. That is my biggest gripe with this practice. I really like this doctor I think he is great but his staff is not and I don't know if they don't give him messages or what the story is. When we see him Thursday I am going to say something g again about this. I was really hoping he could order it for tomorrow and we could have the results by the time we saw him Thursday.
 
Amylase and Lipase are the labs used to detect Pancreatitis. Those have to be specially ordered, right? They're not part of a CBC or Metabolic Panel.

I hope you can get the MRE done before Thursday. Thinking of you and Caitlyn :ghug:!
 
Hoping for no more of those pains. She sounds like a very tough and brave young lady. May Thursday bring some answers!
 
kimmidwife said:
Pilgrim and ronroush,
They would probably detect that with labs right?
All the labs they did were normal. MLP this is different then the gastroparesis pain. Maya and Sascot partial blockage is exactly what I am worrying about.
I called the doctor today asking if they can order an MRE and as is usual for them no call back. That is my biggest gripe with this practice. I really like this doctor I think he is great but his staff is not and I don't know if they don't give him messages or what the story is. When we see him Thursday I am going to say something g again about this. I was really hoping he could order it for tomorrow and we could have the results by the time we saw him Thursday.
Click to expand...
I assume it would be labs. I went to the ER.
 
N used to have severe pain before his surgery to remove a stricture. Typically it happened after eating, or before a BM movement. The pain would only last a few minutes though and usually after he went to the bathroom he was fine. I'm glad you have an appointment this week. Hopefully they can figure out what his causing her pain!!
 
They never called but our appt is tomorrow. I a, got g to find out if they did an amylase and lipase in the hospital I think they might have ruled out pancreatitis but I can't remember and then I am going to push for an MRI
 
It has not been a good day. 😓
It started out that I got a text from my very close friend( who has been fighting cancer) husband that she is not doing well and is back in the hospital.
Then we had the GI appt. our youngest who is seven probably has Crohn's and our middle child probably has a carbohydrate metabolic disorder. They are both scheduled for colonoscopies next Tuesday. I am guses I should start a new post about this.
 
Kimmidwife,
You are a lot more mature and classy than I am because I would say that is more that "not a good day!" :). I'm very sorry you were hit with bad news times 3 with all the other mess swirling. Enough.

I guess the thing we can be thankful for is that tests are scheduled quickly. Sigh. I'm sorry.

Ps. I have suspicions about two of my other children but I just can't deal with that right now. Keep us posted
 

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