Pain and bloating

[katelynsmom]

My daughter is 17 years old and recently diagnosed with Crohn's after a colonoscopy and EGD. She has been having abdominal pain constantly for 2 years. She was just in the hospital for 5 days. They had her on IV steroids, Morphine, Dilaudid, Percocet, and Roxicet for the pain. None of the pain medications worked. Yesterday, the doctors told me that they believe that she is having real pain, but that the pain is more of a "psychological pain that is making her abdominal pain worse". So they sent her home with an antidepressant and Prednisone, and Miralax.

She has abdominal bloating. She is drinking very little and cannot eat anything. She is also not sleeping due to the pain. I feel that the hospital has labeled her as a "seeker" because none of the meds they gave her in the hospital worked. I feel that she has a high tolerance for pain and it may take more to control her pain because she has been sick for 2 years.:sign0085:

I had originally posted this on another thread until someone told me about the parents forum....

 

[katelynsmom]

They are saying that it is psychological because none of the medications worked. This is extremely frustrating because I am a nurse who takes care of crohn's patients

 

[Crohn's Mom]

Hi mom

I'm so sorry they're treating your daughter that way
That's just completely unacceptable !
Did they run any other test on her while she was in the hospital ? Like a CT scan, or MRE, or abdominal Ultrasound?
My daughter has a similar problem when they try pain meds; most of them don't work well for her either. One that did work well was Torradol, but because it is considered an NSAID then they try not to give her that. But that's also why it works so well. It's a double edged sword really ~ but for short term, and while in the hospital, it did work for her pain, when the others didn't. There were a few times when the doctors/nurses didn't believe my daughter either because she had been given Morphine, Diludad, etc..and she was still in massive pain ~ and this was after abdominal surgery !
Just makes me so mad that they would treat a child that way!

big hugs, and hang in there !

 

[katelynsmom]

CT scan was negative. Ultrasound was negative. She was receiving Toradol around the clock. She says that the pain is a bad burning pain .

 

[Crohn's Mom]

Do you happen to know what her inflammatory levels are right now ? CRP or ESR ?
If she has a lot of inflammation right now, then that may explain the "burning" sensation ?

What does her GI have to say about this ?

 

[katelynsmom]

He feels its psychological because the CT and US were normal. I don't know if they drew those levels. I may just take her to the local er.

 

[tlc-x]

Definately take her to ER if she's in lots of pain. And Crohn's Mom, I was told on here by someone that ESR don't always mean inflammation - doesn't really do or show much. My ESR is 35/11 and not changing and apparently that doesn't mean much. Hmm, bit confused on that one.

But yes, you have to take her to ER if she's suffering so much

 

[katelynsmom]

I don't know. I may just take her back to er and demand they help her

 

[littlemissh]

Just because a CT is normal doesn't mean her disease is not active. There are many members who have had normal CT and still had active disease. Have they checked her small bowel with a small bowel follow through/mri enteroclysis/pill cam. It may well be she has disease in her small bowel/upper GI tract.
The longer she is on prednisolone though the less they will find on these tests.

 

[katelynsmom]

Thanks for all of the info...I am taking her to her pediatrician and demanding further testing , and I don't care if they need to readmit her....she is very weak and tired. No, they have done no further testing.

 

[raindrop]

Pain not relieved by pain meds, bloating, and inability to eat or drink much sound like obstruction to me. I would insist the docs rule that out. Over in the thread about what's the most frustrating thing a doctor's said to you (I forgot the exact title but it's in the support forum), some of the posters had similar stories about docs saying it's psychological only to require emergency surgery a short time later.

 

[katelynsmom]

Dr is sending us to the emergency room for further work up

 

[DustyKat]

Thank goodness!

Good luck and let us know how you get on. Fingers and everything else crossed you get some solid answers...:goodluck:

Dusty. :heart:

 

[Sascot]

Just wanted to say good luck. Hope they help her.

 

[katelynsmom]

They are not doing a single thing for her!

 

[Crohn's Mom]

Ugh I'm so sorry !

Did they run any additional tests ? Anything ? WTH is wrong with them!
Is there another hospital you can take her to ??

 

[katelynsmom]

Its emotional pain and we need to let the cymbalta kick in

 

[DanHerefordshire]

huh
:yfrown:
an emotional pain?? what does she say it is an emotional one or physical? has she evan complained about her emotions to be put on cymbalta?

 

[katelynsmom]

Never complained of depression before. Her elbows and ankles hurt in addition to lower back and fought lower quadrant pain.

 

[DanHerefordshire]

ohhh dear... this sounds very strange to be honest...

How far away is your next hospital with a compleatly different team?

 

[DustyKat]

Run, run, run as fast as you can away from them!

That is the most ridiculuous thing I have ever heard. Perhaps they would like to spend a day in her shoes and then we'll see how much "emotional pain" they are at the end of it. Grrrrrrrrrrrrr.

She is newly diagnosed and in pain, the very least it should indicate to them is something else is going on and the only conclusion I can come to is a complication. The joint aches are an extra intestinal manifestation of the Crohn's and the back pain is most likely due to the inflammation in her terminal ileum.

Dusty. :hug:

 

[katelynsmom]

No complaints of depression. I just feel bad that she's not eating or sleeping

 

[katelynsmom]

The next hospital is in Washington DC. I am taking her to a GI doctor tomorrow who I work with. Hoping he can figure something out or decide to send her to another person who can help her.

 

[DanHerefordshire]

That sounds a very good idea... washington hospital is also a good idea if that fails...washington looks a big city where they will have a large very experianced team with crohns.

if i go to hospital i travel an extra 40 miles and drive past the closest two... its worth it to get better service..

 

[kimmidwife]

katelynsmom,
We had a similar issue when my daughter was first diagnosed. They could not get her pain under control and tried to call it psychological. We ended up taking her to a different doctor in New York who put her on a medication that finally helped for a while. Later on we found out that she was probably having a part of her insetting partially rupture which was causing all the pain. It actually sealed itself off. (between the intestinal wall and membrane ) and caused what we thought was a tumor when it was detected on MRI a year later. When they went in and opened her up they found out it was actually a rupture that created sort of like a large bubble. Anyway after this surgery she still had a lot of pain (although less then before) We put her on Amitryptalline which is also a type of antidepressant that in low doses helps pain (not therapeutic for depression at those doses). We have continued to have issues on and off and actually consulted with a pediatric pain management team. (if they find no cause for her pain I highly recommend this) I agree continue to explore why she is having this pain at this point it has not been looked into enough. Also fire her doctor we fired our first pediatric GI and are somewhat happier with our second he is more willing to listen and takes the time when he sees my daughter.

 

[dannysmom]

This is awful. I see you are in Maryland ... so am wondering if this was at Johns Hopkins?

 

[katelynsmom]

Hopkins is 2 hours away from me, as is Washington Hospital Center. I am at the point that I may end up going up there for another opinion. The doctor that we are going to today has a doctor in DC that he sends his patients to if he feels that he can't help them. The main issue here is she is right at the end of being considered at pediatric patient and too young to be considered an adult....

 

[Tesscorm]

If it's possible, at her age, I would go to an adult GI. This will give you consistency of care and an opportunity to follow through with a treatment with the same GI. My son is in a similar situation, he was diagnosed at a children's hospital in May, just before turning 17 in July. He'll be 18 this year and we have to transfer to a new GI. Its a shame, not only because I like his GI, but now we have to start all over again, building a relationship, etc. with a new GI...

 

[katelynsmom]

I agree. I am just upset that people are not listening to her. My own sister just called and "being devils advocate- could she be hurting from emotions?" is what she asked me. Then I had to go on and explain the extraintestinal manifestations of crohns to her. I am hoping that today's appointment will do something....I am asking for a small bowel series and MRI. Hopefully since he is a coworker of mine he will listen to me.

 

[Tesscorm]

Good luck! I've never had to deal with doctors not listening to the extent you and your daughter have experienced but I can imagine your frustration and worry. I hope all goes well today!

 

[Crohn's Mom]

The main issue here is she is right at the end of being considered at pediatric patient and too young to be considered an adult....

This breaks my heart to hear that another child is going through this !
This is EXACTLY what happened with Gabrielle for months ! New pediatric doctors didn't' want to get involved and NO adult doctor or surgeon wanted to touch her! On one of her hospital stays she was screaming in pain, they had already told us that she had an abscess, and the pain meds weren't helping her. It got so bad that our nurse on duty brought me her pediatricians personal phone number in and said she didn't care if she got fired at this point that SOMEONE better order more pain meds for Gab! I called that doctor and while he was surprised it was me and not the nurse, he fumbled with words and didn't want to "over ride" the on call doctors orders for pain meds !! I started screaming at him that he has been her doctor for 17 years and I am giving him permission to override everyone! It was so emotional ! I'll tell you what tho...that nurse had those pain meds in there in about 30 seconds ! Unfortunately it took 3 more injections in the next 45 mins to even begin to settle her pain because it was allowed to go so long.

I tell you all this because this is when I took things into my own hands and called the Mayo clinic myself and begged for an appointment there. Thank god I did because things with Gab were really bad inside and no one was listening ! Please don't wait for permission from anyone, or confirmation that you're doing the right thing ! Take her to Johns Hopkins or Washington ASAP. The doctors where you are 'JUST DON'T GET IT' obviously and you're daughter needs help NOW.

:ghug::ghug::ghug:

Edit: the Mayo clinic for us is a 2 hour drive also by the way ~ and well worth every second of every trip for the specialists there !

 

[Crohn's Mom]

by the way ~ I meant to say there ARE adult doctors out there that will start treating "children" at the age of 16 (sometimes even younger depending on the severity of their case). Gab's current doctor said he has treated one patient as young as 12.

 

[katelynsmom]

Wow- Looking at your daughter's medication list-it looks just like my daughter's list right now! During her admission, the pharmacist told her "you are not getting Dilaudid or a pain patch. So don't ask again!" After talking to my cousins (one is a peds nurse in charge of a pain council and the other is a doctor) they feel, as well as I do, that she has been labeled by the nurses and hospital. So we will NOT be returning there, or to the local ER where we went yesterday. The doctor did not even touch her. Just recommended seeing a pain psychiatrist.

 

[katelynsmom]

The one I am going to today starts seeing them as young as 14, as do some of the other internists I work with. I just wish I lived closer to Hopkins.

 

[katelynsmom]

The other thing I am considering is going to National Institutes of Health since that is closer than Hopkins.

 

[katelynsmom]

So we went to a new GI today. He actually listened to her! He started her on Ultram, which is a start. He was surprised to hear that they had not done a small bowel series. One is going to be done in the next couple weeks. He also informed her that he is going to see her every week until her symptoms/disease are under control. I feel very happy with being as persistent as I can be....It is nice to know that it's not emotional pain!

 

[DanHerefordshire]

thats good a small bowel series is being done...a recent endoscopy and colonoscopy would be usefull as well if not already done recently...

in the uk if in bad pain a ct scan is carried out in a very fast time scale usually

ultram is a start odviosly it will not fix any problems though will just hide them

has he removed her of the medications for psychological problems?

 

[katelynsmom]

Colonoscopy and egd already done. That showed inflammation of terminal ileium. He gave ultram so she can go to school, she has missed a week he said she does not need to take the Cymbalta. CT scan was negative last week. He says she has "fullness" in right lower quadrant.

 

[DanHerefordshire]

at least he,s on it now... sounds very promosing:biggrin: if the bowell series is clear its more than likely the inflamation in the ileum causing the trouble still... it usually disapears all of a sudden but if this did not happen with her hospital stay and its still inflamed will need more steroids to get this to happen

or a very good alternative is a liquid diet

 

[kimmidwife]

katelynsmom,
I am so glad to hear you finally found a doctor who is willing to listen. Keep us posted on how it is going.

 

[AZMOM]

No one knows her better than you do. If you know in your gut something isn't right, then it isn't right! Thinking of you both.....

A couple of months before Claire's arthritis dx, a peds ortho asked me if "everything was alright at home". Not the same but point being, I get it.

J.

 

[katelyn]

I

 

[katelyn]

Still in severe pain obviously cant sleep considering its 3:10 am. Im bloated and sore just about everywhere. I cant keep down food or drink. I just want to get the pain controlled so I can sleep and fo to.school and graduate in june so I can move on with my life. Its hard to do when you're stuck on the couch. id like to kno how some of you deal with it. Im fairly confused and overwhelmed. Reading.my moms post gave me a little comfort just knowing people understand. And agree this is NOT psychological pain.

 

[ormsklad]

Hi

I can see why your upset, the first GI I saw told me ith was in my mind so he put me on anti dep. They made me worse when I went back to him he said to me that its because Im overweight and dont want to be helped. I saw the otherguy at the other hospital he said I needed surgury and by the surgon I was told I didnt. Like in Danherefordshire post, if you dont mind traveling you could get a better service, I do go past three of my local hospitals to go to mine but I know im getting the correct care I need. Good luck

 

[Keekee]

@katelynmom!

I hope your daughters feeling better.

I have had crohns for about 7years now , infact I was 17 when the symptoms first developed - so i can imagine how she feels. Mum recommended that i join this forum and it's helped heaps and heaps - so you are def on the right track with joining the forum.

As far as the bloating is concerned - there are several diets that you can follow - best thing for her to do now is avoid carbs and sugar. As a 17 year old I'm sure this is very difficult, at 23 i'm still going dealing with pubescent cravings for chocolates, chips and soda.

I have 2 suggestions for you

1 - the easiest way to get rid of the bloating is to lay down in the fetal position - but keeping in mind that the spine must remain straight. So just ask her to lay on her side - pull her knees up to her chest hug it close to her body ( almost pressing her thighs to her tummy) - when ever she feels bloaty.

2 - came across this wonderful treatment only a month or two ago and I wish I'd known and tried it before -
Roast Aniseed for about a couple of mins - until theres a little bit of an aroma, tip the seeds into a jug and fill the jug up with hot water - Then Ask for her to replace drinking plain water with this cooled Aniseed soaked water.

I was as skeptical as you probably are right now, but it has helped so so much with the bloating. I hardly ever drink bottled water - Switching to Aniseed soaked water has helped so much with the bloating, and believe it or not, food is being digested better, and my haemoglobin count has quickly ( within 2 months) jumped from a 7.5 to to 10.5! =D

Result of this - I'm less tired, less bloated and Can eat without worrying about having to gross everyone out by burping at the dinner table!

Tell me how it goes! It's worth a shot, if it doesn't agree with her she'll know immediately. But imagine how much better she'll feel if it works for her too!

Try and avoid milk and coffee and soda.

 

[Crohn's Mom]

Still in severe pain obviously cant sleep considering its 3:10 am. Im bloated and sore just about everywhere. I cant keep down food or drink. I just want to get the pain controlled so I can sleep and fo to.school and graduate in june so I can move on with my life. Its hard to do when you're stuck on the couch. id like to kno how some of you deal with it. Im fairly confused and overwhelmed. Reading.my moms post gave me a little comfort just knowing people understand. And agree this is NOT psychological pain.

Hi Katelyn ! :soledance:
So nice to "meet" you and see you here on the forum yourself !

I'm so sorry you're feeling so poorly and in so much pain
Hopefully the doctors will get you sorted soon!
We're all here to support you, and your mom, in the meantime! :hug:

I wanted to let you know that there is a teens section here as well, so hopefully you can talk with some more kids your age and share your experiences

Teens

 

[kimmidwife]

Hi Katelyn,
Welcome, sorry you are having so much pain! Glad you found the forums and we will help all we can. My daughter is Caitlyn also and has had a rough time as well. Let me know if you would like to talk with her I will put you guys in touch.

 

[DustyKat]

Still in severe pain obviously cant sleep considering its 3:10 am. Im bloated and sore just about everywhere. I cant keep down food or drink. I just want to get the pain controlled so I can sleep and fo to.school and graduate in june so I can move on with my life. Its hard to do when you're stuck on the couch. id like to kno how some of you deal with it. Im fairly confused and overwhelmed. Reading.my moms post gave me a little comfort just knowing people understand. And agree this is NOT psychological pain.

Hey Katelyn, :hug:

I am so, so sorry to hear that you going through all this.

As you know better than anyone and as you have said, they need to get to the bottom of what is causing your pain first and foremost. Once they start to treat it then things will improve, it will get better hun and you will be able to achieve what you want. I know my own kids found studying hard when they were unwell, the pain just sapped their energy, but once they were on top of it and in remission they were soon living life to the full again.

How are you now? Have you managed to get any relief and/or answers?

Thinking of you, :heart:
Dusty. xxxxxxxx