New diagnosis

new diagnosis

My daughter is 17 years old and has had abdominal pain for the last 2 years. We finally found a GI doctor that would listen to us. Her pain is in the right lower quadrant and is constant. She had a colonoscopy and upper endoscopy. The diagnosis was terminal ileitis The GI doctor sent her biopsies to University of Maryland and the diagnosis was Crohn's with colitis features. She was just in the hospital since Wednesday of last week for intractable pain. She was given Dilaudid, Morphine, Percocet, Roxicet, and Gabapentin. None of the medications gave her relief. The pediatric hospitalist says that she has narcotic brain chemistry due to the pain medications. They discharged her home with Gabapentin and was told to go to counseling. Has anyone else been through this or have any suggestions to help her? She is tired of hurting and wants to be able to finish her Senior year of high school.

Hi katelynsmom

it sounds to me as they have done a good job of the diagnosis... there really needs to be a bit more info on the exact problem in the ileum though???

In my opinion all the medication she was given is just a big concoction of pain killers these may help take the pain away but if there is damage inside is inflamation e.t.c? then i would think it would need a different type of medication like steroids to treat that as pain killers dont fix the problem they just temporey hide it...

Sorry- I forgot to mention that she is on steroids, Apriso, and just finished up antibiotics for H Pylori. She is also on Protonix twice a day. She is at the point where she feels that the pain is burning and stabbing in her right lower abdomen. So they sent her home with Cymbalta to help with pain, but that takes 2 weeks at least to start to work.

that does sound a bit better i have never personlly took apriso... but as far as im aware its not a very strong steroid its more of a maintance drug for when in remission...

Cymbalta is good for stomach acid and again would be a big benifit but when in remission more so

apart from the pylori have they told you what other damage has been caused? is there inflamation?

the colonoscopy showed inflammation of the terminal ileum. And she is on Prednisone as well.

It sounds to me like the Apriso is not doing the trick... i would telephone the hospital as soon as you can and tell them your situation and make it clear the pain is getting worse ... in my opinion they should act quite fast and give some stronger medication to zap the inflamation.

I was on Gabapentin for over a year until i read an article that it can actualy cause Colitis , If I can find it i will post it. It was originally perscibed for back pain which turned out to be from my bowel.

How do I approach them after they tell me that it is "Psychological pain"? I feel that they have labeled my child as a seeker of pain meds in the past couple days.

Thats a lot of different medication they had her on at once to be honest... there is still more things they could do though..
plus if your in hospital and still in very bad pain they should not let you go home really

i cant think they could diagnose someone with them problems then say its psycholoigical.. thats beyond me

Yes they did let her go home in pain. I am trying to get her to calm down. I am trying to see which hospital I want to take her to. The local hospital does not have a pediatric GI doctor. But she is close to bring 18 I am going to look into an adult GI. It makes me feel bad because I am a nurse and feel as if my hands are tied. Have you ever tsken valium as a smooth muscle relaxer?

Hi katelynsmom and :welcome:

Oh my goodness, I am so sorry to hear of what your daughter is going through. :hug:

Both of my children have Ileal Crohns with my son being the most recently diagnosed, also at 17. He often described his pain as burning.

Are you able to get a second opinion?

Did your daughter have any imaging (scans) done to show the extent of disease in the small bowel and to rule out complications? I am not suggesting she has complications but the fact that the pain is still present and uncontrolled is a concern and disgraceful that they wave away it away as being psychological. It needs to be established first and foremost that aside from inflammation she does not have strictures, fistula's and/or abscesses. These sort of complications are not that uncommon when Crohn's is present in the ileum.

If it were me I would tell them not to insult my intelligence by telling me that my daughters pain is psychological. I am living this with her 24/7 and it was the medical profession that ignored it for two years. I refuse to see her continue to suffer so do something about it. Get mad Mum. I know it is is often foreign to us to go down this path but unfortunately is the squeaky wheel that gets the oil.

With my own children I have always found severe abdominal pain that I am unable to control at home more than enough reason to head to the ER. Every time I have done this there was always a reason to admit and investigate further. My own daughter was undiagnosed for 18 months and if ever I am made to feel as if I am over-reacting I have no hesitation in raising that fact and it usually shuts them up. :wink:

Please also ensure that she has blood levels done for B12, Iron Stores, Folate and Vitamin D.
Also perhaps look into some Enteral Nutrition, it may help to rest the bowel and alleviate some of the pain.

There is also a parent's forum you may like to pop by and have a look at...

http://www.crohnsforum.com/forumdisplay.php?f=49

Good luck and welcome aboard!

Dusty. xxx

I was going to ask about her appetite/if a what she is eating. Sometimes going entirely liquid for a period of time helps with the pain...I recently had to do this and survived quite well on a liquid diet for babout 3 weeks and I reintroduced solids veeery slowly. But, I started out with a nice amount of extra weight...if she's already thin and losing weight this might not be the best idea. Best of luck finding the right help!

Hello and welcome to the forum. It is is a disgrace that your daughter was sent home still in pain,out of interest when was the Prednisone started and at what dose? Usually this is really good at getting inflammation under control and people usually notice an improvement in symtoms within a few days....

It is a shame that you are having to deal with docs that are so ignorant, I do hope that things can improve in this area and your daughter can get some proper care and treatment.

They started the steroids in the hospital on Wednesday night, Solumedrol. And sent her home with Prednisone. Her appetite has been non existent. She just gets increased pain after eating or drinking. The CT scan and abdominal ultrasound they did was normal.

Thank you for all of the information....

Hi katelynsmom

I'm so sorry your daughter has been suffering for so long. My son was diagnosed in May when he was 16. His treatment was Enteral Nutrition (liquid diet). While he has never had pain, the EN treatment did alleviate his inflammation and other symptoms fairly quickly. There are no side effects, provides nutritional benefits and bowel rest.

As was mentioned above, perhaps the liquid diet would help her. As far as I know, if necessary, she can use the liquid diet as well as medication (but, please confirm this with your daughters GI).

It is horrible when doctors brush off symptoms, pain or otherwise. I agree with Dusty, the squeaky wheel gets the grease! When I have encountered this and I truly believe they are wrong in not following up, etc. I have been polite, nice but continue to push for what I believe I need... lots of 'yes, BUT...', 'Oh, I see, however, I'd still like...', 'sorry, I still don't understand why we can't...' I think they finally give up on me! :ywow:

Good luck! I hope your daughter gets some relief soon!

Her doctors are so set on the Cymbalta and steroids and nothing else. SO she has to wait the 10-14 days for the Cymbalta to kick in to get relief from her pain. I feel really bad for her because of the elbow/ankle pain and the discomfort in her lower back.