Frustrated!!!

[Terrywithtummytrouble]

Hello, I'm a 33 y/o female who's been having abdominal issues since April 1,2012. I had a fever with was throwing up for 2 days. Went to the ER and was admitted. The doctors initially saw inflammation in my proximal jejunum and terminal ileum. Stated it was some kind of IBD. Had every test possible done EGD's, colonoscopies, capsule study, balloon push study, more EGDs, barium swallows, small bowel bacterial growth study. They found lesions in my jejunum but stated that it was from NSAID usage. These tests have spanned from April 2012 until now. I was hospitalized on 5 different occasions with several more ER visits for N/V/D. It's been over 3 years and I stopped taking NSAIDs since the first ER visit. During one of those hospitalization a I had a pulmonary embolism. I've never had pain this bad in my life!!
My body had no problem dropping 20lbs in less than a month without trying.

I've had my gall bladder out in May 2013 and had a lap Nissen fundoplication in Aug 2015 because my GERD was uncontrollable. I've also had an appy when I was young.

My current GI doc states that I have severe IBS and visceral hypersensitivity disorder and has me on budesonide 9mg daily and a PPI. He thinks it's all in my head. I'm taking Paxil and Ativan PRN and going to talk therapy on a regular basis. My psych doc states it's not psych issue because I'm on the correct medications.

My GI did the Prometheus test "just cuz" and I tested positive for ASCA which is an indicator for Crohns. I keep getting this epigastric pain, D, and nausea that is really affecting my life. I am constantly tired. I'm not sure what else to do except go to GI guy #4. I KNOW something is physically wrong!! Advice would be hopefully!

 

[my little penguin]

If the GI thinks is IBS then why did he give you steroids?
Entocort is to reduce inflammation .ibs doesn't have inflammation.
Have you had a fecal caloprotectin recently ?
Did they look at Rheumo issues since they tends to cause sub clinical GI stuff?
Have they look at gastric emptying since all your issues are upper in nature .
To clarify IBS is not made up
It has very physical symptoms that to not cause damage to the GI tract but are very real in nature .

Have you seen dietician and pain management for IBS ?
Tens units work great - take weeks but stop the constant nerves pain signal to the brain
Some food triggers cause worse symptoms than ever so dietician can help you with that

Good luck

 

[Terrywithtummytrouble]

He thought that because I have RLQ pain it may help. The gastric emptying test was negative. I had a full arthralgia panel run not too long ago and it was negative except for VIT-D. I was on b-12 shots for awhile but one of my PCPs stopped it because I was within normal range. For pain management I've done Tylenol, hot "shaths" (sitting in the tub with the hot water beating on me), TENS unit. Super bland diet. Full liquid diet. ER visits when I can't stand it, PO phenergan, zofran. I haven't had any stool tests recently. Maybe I'll ask my primary when I see him next. I can't see my GI guy until APRIL!

 

[my little penguin]

Spondyloarthritis
Causes sub clinical GI stuff and joint pain BUT
Normal bloodwork

 

[Terrywithtummytrouble]

I'll have to look into that. Thanks!

 

[ronroush7]

If it is IBS, my doctor gave me Levsin. I think that is what it is called

 

[valleysangel92]

Hello there,

I have to agree with MLP, I don't see the sense in giving you budesonide if they think its IBS. They are a form of steroid, usually used to treat Crohns in the small bowel,so if they are helping you at all then that would suggest to me that you have active inflammation.

Do you have a history of heavy NSAID usage? If so, did your symptoms start before or after you started using them? I only ask because you say they've blamed NSAIDs for the damage they found previously and I wonder what evidence they have for this.

It doesn't sound to me like this is all in your head, and it always bugs me when doctors act as though it is. I want to let you know that you aren't alone in having difficulty getting diagnosed, I fought with doctors for years to get them to take me seriously and have had a string of tests come back fine even though im mid flare. There is a lot still to learn about IBD and the way it acts on the gut, and I sometimes think this hinders doctors in trying to diagnose it.

It might help you to keep a symptom diary, write down each symptom, if you have pain give it a score betweeen 1 and 10 , make a note of what your eating and how you're feeling afterwards, this will help to see if there's anything that's consistently exacerbating your symptoms.