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onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 2/4/2010 6:38 PM (GMT -7)   
Like most people, I went through a couple of years where all I could get were, "It's all in your head," or "It's just IBS. Eat more fiber." Nobody really suspected Crohn's, because my symptoms were not typical: vomiting, nausea, mouth sores, and terrible abdominal pain. Almost all of the tests for various possible diagnoses were negative, save for a few that did point to Crohn's: an EGD and a small bowel enteroclysis that showed thickening and ulcers, but the doctor who ordered these tests did not think they were worth looking into, stating that I probably took too much ibuprofen and had some kind of "infection".

I finally went to see my father's internist, who is very good with diagnostics. Based on the results of the tests the gastroenterologist didn't feel were worth looking into, he suspected Crohn's, and sent me for a Prometheus test (positive for Crohn's) and a pill cam study (ulcers suggesting early Crohn's).

The gastroenterologist who read the pill cam skipped town. Claimed he was going back to his home country, but he's since opened a new clinic about 20 miles away. He sent me out the door with a free trial of Pentasa, basically said adios, and that was it. No referral to anybody else, either, so my internist managed me for over a year. He put me on azathioprine (I didn't have prescription coverage at the time, and Pentasa was WAY out of my budget), and I responded really well to it.

My dad wanted me to get a second opinion on the Crohn's opinion, so I went to the University of Utah. Had a colonoscopy that came back with active inflammation. Nothing major. I had been on azathioprine for about 2 months before then, so who really knows? That particular gastroenterologist also agreed with "mild early Crohn's," and that was pretty much it.

Azathioprine worked great for almost a year. Symptoms were still there, but at least became tolerable. I had so many good days. Then my father died in July, symptoms went through the roof (don't know if it was stress-related or what), and eventually ended up with a bowel obstruction in August. It righted itself on its own, thank God, but ever since, nothing has worked.

I'm throwing up almost every single day, pain is unbearable, and I'm just going out of my mind.

My internist admitted it was out of his depth after two short-courses of Prednisone (that did absolutely nothing but make me break out) and sent me to a local gastroenterology group that I haven't had much luck with before. The "see ya later, sucka" doctor was part of it, as well as the first GI I ever saw, who told me I was overreacting and that it was all in my head.

They couldn't get me into the GI who came best recommended (3 month waiting list), so I agreed to see the nurse practitioner. She put me on Pentasa again (4/day, then 6/day, and now 8/day) with no results. I had an EGD shortly after starting the Pentasa, which showed nothing conclusive, only inflammation. Some kind of blood test (no clue what the name is) for inflammation was also very high. The vomiting has gotten considerably worse since then -- some days, all I can do is kneel in front of the toilet.

The NP finally told me that I was getting to the end of the conservative options and needed to try Remicade. I was kind of reluctant (obviously, since it's only "mild"), but she said my only other options were hospitalization, steroids, or Remicade. I'd rather get hit by a bus than go back on steroids, so I decided to do the Remicade. I had my first infusion two weeks ago, with no obvious effect. Only that my bowel movements have been more normal, but who knows if it's the Remicade or if it's just coincidence?

I saw the "it's all in your head, you're overreacting" gastroenterologist today. The NP recommended I see him to check on how I'm reacting to the Remicade, blah blah blah.

He read quickly over my records, said there was barely anything in there to indicate I had Crohn's, test-wise and symptom-wise, and that using Remicade was like killing a fly with a hammer (which I partially agree with). My symptoms are apparently "do not sound like Crohn's" -- well, DUH! They never did! He told me to cancel my Remicade infusion on Monday -- he wants to do a colonoscopy, EGD, and pill cam study on Monday instead, all in the same day or two.

I'm wondering if this will throw off the whole induction schedule. This was supposed to be my second one, so if these tests do indicate that the vomiting is Crohn's-related (it definitely was before!), will I have to start all over? Week 0, Week 2, Week 6? Or what?

Frankly, I'm furious that when I'm throwing up almost every day and am completely miserable, all he can say is that all I've got is mild Crohn's (if even that, he's not wholly convinced I even have Crohn's), and it's probably nothing, blah blah blah. I don't care if on a microscopic level, it's only mild -- symptom-wise, I feel like trash. I thought that finally having a diagnosis would mean not getting dismissed like a whining kid, but apparently, you've got to have more impressive test results for that.

< /rant>

Has anyone else had a colonoscopy, EGD, and pill cam study all on the same day, or on two consecutive days? Is it tolerable?
Diagnosed with Crohn's in 2008 at the age of 22.
Currently on: Remicade, Imuran, Pentasa, Zofran, Tramadol, Welchol, Phenergan, Ambien, Metoclopramide, Omeprazole, Hyoscyamine

Post Edited (onedaymore) : 2/4/2010 7:13:51 PM (GMT-7)


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/4/2010 6:43 PM (GMT -7)   
yes, a scope and pill cam are usually done on the same day since you were VERY clean.
Prolly better that way.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 2/4/2010 6:51 PM (GMT -7)   
Your symptoms sound just like Crohn's to me! Doctors can be sooo frustrating!
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/4/2010 6:59 PM (GMT -7)   
Try your best to hang in there. I'd recommend getting on the list for the GI with the long list it sounds like there's some very good reasons for that.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Cleo
Veteran Member


Date Joined Apr 2004
Total Posts : 992
   Posted 2/5/2010 6:32 AM (GMT -7)   
I think the "it's all in your head" story is universal with CD. I had one of those GI's. I also had the " pleasure" of getting to put him in his place. He happened to be covering for my GI and showed up in my room.(about 5 years after) I told him to sit down, quit writting and listen.

I put it like this....."Since our last contact when you informed me this was all in my head, I have had 4 absesses, rectal cd, 3 strictures, 17 fistulas, 2 obstructions, one that perforated my colon and required emergency surgery, where they removed part ofthe sigmoid colon and small intestine, (which by the way were wrapped around my ovaries and tied in knots from previous in my head inflamation) and resulted in the colostomy that I still have. Please stop me when I get to the part that's in my head!"

He stood up, shook my hand and apologized. I waited along time to get that off my chest. Made me feel better!


Cindy 
 
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 2/5/2010 6:47 AM (GMT -7)   
Isn't it sweet when you get to go back and prove to them that they were wrong?

I have ulcerative colitis, but I drive 60 miles to see my GI. There is only one in the small town I moved to, and he told me that I couldn't have UC because I wasn't underweight. This after a five-year flare of going 15-30 times a day every day, with bleeding and pain.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/5/2010 7:16 AM (GMT -7)   
I agree does sound like you have Crohns to me too. It also sounds like from your symptoms that you might even have a stricture. When I had my stricture that had became really narrow I had the puking everyday too. I sure hope these tests finally provide definitive answers for you and you get feeling better too. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 2/5/2010 9:06 AM (GMT -7)   
I just had a colonsocopy and egd on tues. They are done together. i think the pill cam on top of this would be excellent for a full diagnostic that you seem to want and need. I wonder if your disease is higher up to be causing you all this vomiting. But no need to wonder you will hopefully have FULL information after these tests. Do your very best on the preperation so you get the best possible answer. Best of Luck.


onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 2/9/2010 6:48 PM (GMT -7)   
Thanks for all the responses. The colonoscopy and EGD were both normal (which is a good thing -- since my last EGD a month ago wasn't), and it was speculated that the Remicade is doing its job. The only problem then is that I'm back at the square one when it comes to the vomiting, unless the pill cam shows something.

He wants me to continue Remicade, though . . . not sure why, especially after the fit he threw last week about my case not being serious enough to warrant taking it.

tsitodawg said...

I am also in Utah and I think that I may even know who the G.I. you are talking about is. I had to leave the Ogden area and drive all the way to Sandy to find one and would recommend him to you if you would like. There are a couple of us on here from Utah and you are not alone. I have not attended the Crohn's support group meetings yet due to it always landing on my remicade or I am sick, but one of the posters on here always keeps me up to date when each is. They meet at the Davis County Hospital in Layton. I was not much older than you when I was diagnosed and I understand how hard it is not to understand this disease. It is very easy to second guess you diagnosis and yourself but you need to be your own advocate. Only you can tell what is occuring in your body and you need to keep the pressure on the medical staff to take you serious. You have a pretty firm diagnosis and you should know that it is not your fault that your G.I. is so sceptical. Remember that just because they are a G.I. does not mean that they are an expert in Crohn's disease. There are definitely G.I.s that are better with different diseases and conditions and learn to think outside of the box. Sometimes the bad one rely only on text book cases and do not realize that their are other manifestations of the disease. Don't give up and don't let them get to you. Crohn's disease is a marathon and not a sprint. There will ups and downs and the goal is to have more ups in the long run.


Wouldn't that be something if you knew him! I'm down in BYU territory, but I've seen GIs in Salt Lake, Murray, and American Fork. It seems like the best ones have huge waiting lists and/or are preparing to retire mad The one I'm seeing right now is very textbook; he even said last week that it was impossible to have Crohn's-related abdominal pain anywhere else except the lower-right quadrant! One of my neighbors is an ICU nurse at the hospital he does a lot of procedures at, and she said that I just need to be very, very firm with him, and speak up, so I'm going to employ that technique at my appointment next week. If that doesn't work . . . I may need that referral. confused Thanks so much for the kind words.
Diagnosed with Crohn's in 2008 at the age of 22.
Currently on: Remicade, Imuran, Pentasa, Zofran, Tramadol, Welchol, Phenergan, Ambien, Metoclopramide, Omeprazole, Hyoscyamine

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