Is it all in my head?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/27/2009 5:06 PM (GMT -7)   
I went to the GI on Monday, after having an MRI (looking for primary sclerosing cholangitis-though I wish they had included all of my abdomen and pelvis so they could see if there's anything going on with my crohn's) My bloodwork (specifically my alkaline phosphatates) have been high for 4 months now, and my doctor is making sure they're not missing anything. Thank God the MRI was normal...I couldn't handle another non-curable disease right now.

Anyway, after they called and said the MRI was normal, I asked the nurse to tell my doctor I'm still having a lot of nausea and pain after I eat, and I'm not hungry anymore because of it. They had me come in, and basically told me "there's nothing physically wrong with you". I had a small bowel series done a few months ago after a 2 week stent of pain and nausea and inability to eat, but I was feeling better by the time the test was done. This time, it's been going on for about a month. The nausea starts soon after I eat and the pain hits my right lower abdomen about an hour or so after I eat. This isn't normal for me, and though I am stressed right now, the fact that I'm hurting where my surgeries were concerns me. Basically the physicians assistant told me that all my tests have been normal so there's nothing wrong. Their suggestion (she spoke to my doc earlier knowing that my doc wouldn't be there when I came in) was to double my Effexor and hopefully my stress level would go down and I'd feel all better. I feel like I'm handling the stress well, and I don't feel over anxious about anything right now.

So basically they're saying this is all in my head. I have a hard time believing that. Your alkaline phosphatates can be high from crohn's activity, and they're completely dismissing that fact.

I'm giving it a try and doubling the Effexor, but I'm worried that they're ignoring something, and it will lead to surgery if left untreated.

They also said that Humira works so well that they don't think the crohn's could have become active while on it. I missed 2 doses in January for surgery (not belly surgery) and after that was when things started to change.

What do you think? Could it be all in my head?
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/27/2009 5:13 PM (GMT -7)   
Of course it "could" all be in your head, but I seriously doubt it.

I'm always told everything is "normal" until I demand a scope because I know better. My bloodwork, CT's, MRI's - all can be peachy - but the scope shows the truth for me. I don't know why. When was the last time you got scoped to see what was really going on? I hate to promote the horrible process, but it might be time.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/27/2009 5:20 PM (GMT -7)   
I had a scope in December, and everything was fine. All the biopsies came back normal, and she didn't see anything. I realize though, that a lot can change in 8 months though...which is my concern.

Next time I do have to have a scope, I need to find a doc in my area to do it though, since my copay for my doctor doing a scope is $800 (that's why I had it in December, before the copay doubled). If I can get a doctor to do one at the hospital closer to home it's only $200. I still can't really afford that as I'm unemployed and going to school, but my mom said next time I need one, she'll pay for it for me. I'll cross that road when she decides she wants one done on me.

I'm so aware of the fact that NO test is 100% from working in xray, and usually my doctor is good about assuming that maybe something is brewing and not showing, but right now she's being different. It's like they think I'm just whining about things, but right now eating soft foods even hurts, and that's just not right. I tried to explain to her that normally I love eating, but right now, I just don't even want to.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/27/2009 5:22 PM (GMT -7)   
A basic rule for medical professionals:

"If stumped, find a psychosomatic cause for the symptoms, especially if the patient is female.".

Hang in there, Becky. The truth will come out eventually. Just don't expect them to apologise.

Ivy (a bit cranky and cynical this month).
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/27/2009 6:17 PM (GMT -7)   
I second that Ivy.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/27/2009 6:41 PM (GMT -7)   
If you got scoped in December and everything was fine,

but then you missed the Humira in January and that's when everything "started to change",

then don't wait too long for your doc to order a scope because she may never do it if your other tests are normal.

YOU have decide when you've had enough. Preferably before you've lost 20 lbs from not eating.

I hope you get some answers soon, however you choose to find them.

Meanwhile, yep. We're just crazy females.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/27/2009 6:53 PM (GMT -7)   
You may also want to inquire about having a pill capsule endoscopy, which should be able to find disease activity hiding out that other tests may miss. A pill cam was what diagnosed my Crohn's after several other tests were inconclusive.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again. Waiting to see GI.
Current meds: 4g Pentasa, 150mg Trazadone, Ativan as needed


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/27/2009 9:27 PM (GMT -7)   
Your scenario sounds a lot like SIBO (Small Intestinal Bacterial Overgrowth). I notice that you are taking Prilosec (a Proton Pump Inhibitor). These commonly reduce your stomach acidity below the level required for you digestive enzymes to work. This results in undigested food entering your small intestine. This, in turn results in a reduction in the peristalsis due to sensors in the gut triggering braking mechanisms due to undigested food. This then allows bacteria to multiply in your SI. PPI's are a known cause of SIBO, but the doctors don't consider it clinically significant because it is less severe than some other causes of SIBO. In combination with your Crohn's though, I would guess that it causes "clinically significant" symptoms. Refer your GI to: http://www.nature.com/ajg/journal/v103/n12/abs/ajg2008607a.html

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/27/2009 11:38 PM (GMT -7)   
If you have already had 2 resections and been on a TNF inhibitor, then why are you doubting yourself? Humira is not cheap and your insurance would not have given the approval if your diagnosis was not accurate or positive. The same goes with the resections, those surgeries just don't grow on trees to be picked by ever hypocondriac to have. Yes there are other reasons and conditions to have a resection for, but having 2 should give you a little peace of mind that you have Crohn's disease. It is very easy to go and feel this way as when most of us look in the mirror we don't always see the sickly person that you would expect to see with all of the pain that you are experiencing. This is also a daily emotional battle for me and I have been confirmed by biopsy, capsule, scope, and promethius.
When I look in the mirror on a good day I see a well built 29 year old man and not a disabled person. Sometime(please don't take this wrong) I think that it would be easier to have a handicap that was more visible but then I realize what a blessing we have that we can be viewed on some good days as normal people. Society can be cruel and we don't usually have to go through the verbal or staring abuse that some other disabled people do. That is until we get to the point that we have lost all of the weight and people think that we have eating disorders or are drug abusers.
Don't let your doctors get you down. It seems like everytime that I have had to switch to a new G.I. or see a new specialist, I have had to go into the prove I am really as sick as I am syndrome. It is not right and should not be justified by a doctor that we should have to go through this, but it is what it is. You know how you feel and sometimes tests are not always accurate. Have them do the promethius test on you if you really need that peace of mind. While it is not 100%, it is darn near close and will atleast get you going in the right direction. If you for so odd chance don't have Crohn's disease, now is your chance to find out and get treated for the right conditon. Why put these toxic medications in a body that does not need it? Don't ever let a doctor tell you that you are perfectly fine though when you are experiencing pain or are constantly sick. You know your body and you know what you should be feeling like.

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/28/2009 9:10 AM (GMT -7)   
It is NOT all in your head.  My blood tests always come back "normal" showing no inflammation although I'm in major flare-up mode.  My gallbladder tests all came back negative but once I convinced them to remove it, the pathology showed it was diseased.  Unfortunately, doctors are human too and they don't always know themselves what's going on.  It's all trial and error in most cases.  Don't ignore your symptoms.  Get your gallbladder checked again.  Maybe it's your appendix?  If you have good insurance, go get some 2nd even 3rd opinions if you have to.  You shouldn't have to suffer every day because the doc's don't know what's wrong.  I'm sorry you're having to deal with this and I wish you the best of luck in getting it all sorted out and fixed.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
"LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/28/2009 12:12 PM (GMT -7)   
I do definitely have crohn's. That's not the question right now. The question is whether or not the symptoms I'm having now are crohn's related, which I think is the case. I went to my PCP today to get the doseage of my prescription for Effexor doubled. He said if it were up to him, he'd prescribe steroids for about a week to see if they make me feel better, but they make me feel so bad (achy joints, unable to sleep, super anxious) so he decided not to try it. He also didn't want to do something like that and go against what my GI was doing. He basically said "we can play their game" and if nothing else, my anxiety will be well under control by changing the effexor dose.

As for the suggestion of a pill cam...my GI has decided in the past it's not a good idea with me. My 2 surgeries were both because of obstructions and I've had so many partial obstructions, so they hesitate to even try a pill cam because the pill could get stuck and require surgery to get it out. It's safer to do a colonoscopy because at least they can't get the scope stuck!

I've had my appendix taken out (it ruptured before my first surgery) so I know that's not the case.

As for my gallbladder, I've had an ultrasound, a nuclear medicine test, and the MRI and none of them indicated that there was anything wrong there. I'm not having any pain in my right upper abdomen, so they don't think that's where the nausea is coming from.

Oh, my dr mentioned small bowel overgrowth, but I just finished taking an antibiotic for a sinus infection, so that would have helped had that been the case. That was her reason for ruling that out....and again today I've started yet another antibiotic for an upper respiratory infection.

They also had me double my prilosec, thinking maybe reflux or excess acid is causing the nausea.

I might add also that I do have some extra weight, so it wouldn't be detrimental for me to lose 20 pounds....though this isn't the way I'd like to lose it!

I guess we'll see in the next few weeks if it is stress causing my symptoms. I know stress can affect your body a lot, but unfortunately I don't think that's the case. I'm willing to try what they said and see what happens though.

By the way, I know so many other people have flares for far more than just a month, and I'm sorry to whine since a month really isn't too long.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/28/2009 1:18 PM (GMT -7)   
Antibiotics only work on bacteria that are not resistant. They don't touch E coli, C difficile, and a bunch of other resistant bacteria. Those bacteria are the ones that cause the problems. It is quite common to cause a C diff outbreak as a result of taking antibiotics. If you want to check for possible SIBO, do a colonoscopy prep - laxative, lots of fluids and nothing but clear liquids to eat. Also avoid sugary drinks. See if that helps your symptoms. If it does, I would suspect SIBO or possibly a C diff infection. Another point - nausea is a common SIBO symptom and also a C diff. symptom. Have they even checked for C diff? There is a 30+% false negative rate for C diff tests, so you may need repeat testing. The specimen must be fresh (or kept refrigerated) for best results.

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/28/2009 1:30 PM (GMT -7)   
Good call "Keeper".  I hadn 't thought of that as a possibility and yet I just took my last Vancomycin for my C-Diff today.  I got tested twice prior, both times negative.  Then I finally tested positive.  Took a 2-week course of Flagyl.  Felt alright for a couple of days and then all my symptoms came back.  Tested positive a 2nd time. This time was on the Vancomycin.  We'll see what happens now that I'm done with that. 
 
So I agree, check for C-diff and the other types of bacterias you can get in your bowel.  Maybe that will shed some light on whats been going on.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
"LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/31/2009 11:40 AM (GMT -7)   
Nausea and upper epigastric pain are clear indicators that my Cimzia is wearing out (it wears out in three weeks), yet it is the first thing that goes away with the medication (1/2 to 2 days after the injection). My disease is not on the lining (though it has been on the past, ulcers and polyps) but on the outer walls (not easily seen on standard tests), I'm not sure how my GI came up with that one. I've also been on a ppi for over six years (sometimes, before the biologics, I had to take them 2+ times a day), plus I have phenergan for the break through nausea.

So...it is not uncommon for inflammation in the stomach...and I also agree with the bacterial overgrowth pain too...just wanted to give you another perspective/idea. I hope this helps...
"The earth laughs in flowers"

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 7:13 PM (GMT -7)
There are a total of 2,734,406 posts in 301,211 threads.
View Active Threads


Who's Online
This forum has 151329 registered members. Please welcome our newest member, OleMiss1990.
338 Guest(s), 10 Registered Member(s) are currently online.  Details
chrisp1, Rikky1, Sarebear89, Xmaslover, KChrispcat, time2reclaim, aloha234, The king, poopme, Annie88


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer