Caitlyn's New Journey

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Test is done. Thank G-d she does not have what he was reading for. He was testing for something called SMA Syndrome. She has increased pressure in her gut near the duodenum. We don't know why but that test as far as the radiologist could see did not show SMA syndrome. He said if she did have it it would be very very mild and not something to worry about at this point. We still have no definitive plan. The doctor could not meet with us Again after the test but he promised he will call later.
 
Spoke with Caitlyn's GI doctor today. She got the reports from Ohio and we made a plan. The plan will consist of two steps, 1. Dealing with the pain. 2. Dealing with the motility.
They think Caitlyn has abnormal nerve enervation in the gut. We are going to start her on Neurontin for the pain. We also discussed her last blood work. Her SED rate was elevated at 40. Her CRP was 0.3 her vitamin B12 was actually very slightly elevated above normal.
 
Glad things are finally moving forward!

My daughter was just started on Neurontin for pain. So far, no side effects. It makes her sleepy so she takes it at night. It hasn't helped the pain yet, but we also haven't gotten to the full dose.
 
I hope the Neurontin helps. We tried it twice with A and no luck. Our GI said he has the most success with it though.
 
My son takes neurotin(gabapentin) three tmes a day 100 in combination with celebrex and elavil at night. side effects like drowsiness and dry mouth only lasted a couple of weeks. It is working wonders with his pain but it took a couple of months to see results so don't get discourage if you don't see results right away. I hope it works soon.
 
We finally got the perscription for the Neurontin. Caitlyn had a bad reaction to it. She couldn't take deep breaths. She felt like so done was sitting on her chest. The doctor said not to take it again. We are going to try propranolol instead.
 
Kimmidwife, we were told if the Neurontin caused problems, M could try Lyrica. Just wanted to let you know in case Caitlyn has trouble with the propranolol.
Good luck!
 
Propranolol was one of the meds I tried for postural orthostatic tachycardia syndrome. I think it was the third beta blocker I tried. Each beta affects each person differently and propranolol made me SOB and a heavy chested feeling, like there was an elephant on my chest. For others I've talked to they had no problems at all whereas the med I take now nadalol gave them trouble and I tolerated it great.

I didn't know it was used in place of neurontin for pain. That's awesome! I hope it's a great med for her!
 
So unfair that she's having difficulty with the neurontin. Hope you can quickly find another that works well for her. :ghug:
 
Hi everyone!
First I want to apologize for not being so active the past week or so. I have been very under the weather with all my health issues and I am super stressing over Caitlyn.
I just don't know what to do with her.
She continues to have very bad stomach pain. She is now having blood in her stools. :(
She continues to have very bad nausea, burping, and occasional vomiting small amounts.
Spoke with her doctor Friday. We are going to do blood work and stool testing again. I am thinking maybe she needs to be admitted for a full work up but she is protesting that she does not want to go to the hospital. She is such a stubborn teenager. We are also trying to work on her watching her diet which she does not like to do at all. Stubborn teenager! :ybatty:
 
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I'm so sorry to hear that Caitlyn isn't feeling well :(

It is SO hard to convince teenagers that something needs to be done! My daughter also hates hospitals, but usually her GI can convince her to do whatever needs to be done. It's difficult when they get used to feeling sick all the time and I think M sort of forgets she can feel better and so doesn't want to do anything about it.

Have they discussed changing her medications? Is her gastroparesis any better? I recently met a parent whose daughter had a gastric pacemaker (didn't know those existed!).
Sending hugs!
 
I hope that you find some answers for her soon! Hopefully, the doc can convince her of the full work up! Sending hugs your way!
 
Maya,
The medicine for the gastroparesis has not worked yet. We know about the gastric pacemaker. They said Caitlyn is a candidate but we have to go through a number of steps first.
 
Sorry to hear things are bad just now. It is frustrating when you have to keep going through the tests and waiting around for results, waiting to see if meds help, all while watching them suffer. I hope you are able to get on top of your health issues, I know how hard it is to try to function and look after others when you don't feel well.
 
Caitlyn had a really rough night. We spoke with her doctor several times today and finally decided that she needed to go to the hospital. She really did not want to go but I think it is for the best. She is in the ER waiting for the doctor to come in.
 
So sorry to hear that she's continuing to feel so ill. Crossing my fingers that she will be feeling better soon.
 
I'm sorry to hear that she is feeling so bad. I hope the docs can help and she finds relief!
 
Sorry to read this! :( I hope she's already beginning to feel better (and that doctors can give you some plan that will really help her).
 
Forgot to update. They admitted Caitlyn and started her on IV steroids. They also for the first time are taking her pain seriously and gave her Nubian for pain. Which I am really happy about.
 
That's great! Hope she feels better soon!

Have you ever asked about Tramadol for pain? M is allowed to take it daily because of her joint pain. It's not ideal and I would love to get her off it but it's better than her being in awful pain all day and night.
 
We've used Tramadol as well (occasionally). It really seems to help A, even when not much else does.

Please update as you're able. Thinking of Caitlyn often and hoping she feels better soon!
 
I have a question. It has been a while since Caitlyn has had a flare this bad. So I have forgotten, how long should it take to see bloody stools clear up with prednisone? Today is her third day on IV prednisone and we have not seen any improvement yet. As usual all her bloodwork came back normal. We are still waiting the fecal calprotectin results. She also continues to have a lot of pain.
 
kimmidwife, I can't remember, has Caitlyn ever seen pain management? It's one of my biggest regrets, not getting M to a pain management doctor earlier. It has been so helpful and has completely changed her life. We have tried biofeedback and CBT and pain meds, all of which have helped.

I hope Caitlyn starts to improve soon:hug:.
 
Finally got the results on Caitlyn's fecal calprotectin. Not good. The result was 790.3
It just amazes me that her CRP a was totally normal. Her SED rate was slightly elevated. I don't remember the exact number at the moment. Thank G-d for the fecal calprotectin. That test is amazing. Waiting to hear from the doctor what to do next. She has been on steroids now for two weeks the test was done right beforehand.
 
Sorry to hear about the FC :( I hope the doctor has ideas.
Did they ever give her something for pain? Thinking of you both!
 
Caitlyn's doctor called and we discussed different options which include:
Keep her on entocort for one month and then wean down and then do one of the following,
Keep her just on the LDN after the entocort brings down the inflammation.
Two, add in either cimzia or methotrexate. Not sure what to do at this point.
 
We have that issue too, normal CRP levels but active inflammation. What is her steroid level? Methotrexate was easy to deal with once you learn the sub q injections which is easy. No major side effects for D, just some joint pain. No experience with entocort or cimzia. If you chose MTX do the needle, not the pill. It is more effective I'm told.
 
Hugs
I thought Mtx stopped working for her which was why she moved to remicade??
Never easy making any med changes .
 
MLP,
Yes that is true but the doctor said that since she has been off it two years giving her body a rest from it then it might work for her again. She did have twenty months where it worked great and then it lost it's efficacy.
Trying to weigh the pros and cons of each.
 
I never thought of retrying a med. But then we barely get any drug to work moderately besides prednisone so I don't know what she would go back & try. Good luck in the decision.
 
M tried Humira again and it worked well for a while. She has been on Methotrexate multiple times (but only with a biologic) and it has worked well each time!
 
Not sure if you have seen this abstract before Kim. Unfortunately no solutions :( but interesting research.

Neuroplasticity and dysfunction after gastrointestinal inflammation:

Abstract

The gastrointestinal tract is innervated by several distinct populations of neurons, whose cell bodies either reside within (intrinsic) or outside (extrinsic) the gastrointestinal wall. Normally, most individuals are unaware of the continuous, complicated functions of these neurons. However, for patients with gastrointestinal disorders, such as IBD and IBS, altered gastrointestinal motility, discomfort and pain are common, debilitating symptoms. Although bouts of intestinal inflammation underlie the symptoms associated with IBD, increasing preclinical and clinical evidence indicates that infection and inflammation are also key risk factors for the development of other gastrointestinal disorders. Notably, a strong correlation exists between prior exposure to gut infection and symptom occurrence in IBS. This Review discusses the evidence for neuroplasticity (structural, synaptic or intrinsic changes that alter neuronal function) affecting gastrointestinal function. Such changes are evident during inflammation and, in many cases, long after healing of the damaged tissues, when the nervous system fails to reset back to normal. Neuroplasticity within distinct populations of neurons has a fundamental role in the aberrant motility, secretion and sensation associated with common clinical gastrointestinal disorders. To find appropriate therapeutic treatments for these disorders, the extent and time course of neuroplasticity must be fully appreciated.

http://www.nature.com/nrgastro/journal/vaop/ncurrent/full/nrgastro.2014.103.html
Click to expand...

Dusty. xxx
 

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