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IBS - could be cortisol problem?
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LilMissMerrySunshine posted:
I'm new. I was diagnosed with IBS (diarrhea) after my daughter was born 5 years ago... started slow then up to 7 days a week. 3 GI docs, finally had upper/lower GI, nothing. But GI doc #3 found a medication that stopped it. It was confined to certain times of day, and never severe.

In September I started having major diarrhea, after four days called my GI doc. I ended up in the hospital for 11 days. They ruled out absolutely everything, but on a lark, ran a few blood tests for rare disorders. My cortisol hormone level came back at zero. The next day they ran the stimulation test, and I flunked. The GI doc at that point decided that steroids was the answer. I either had a virus they just couldn't figure out, or the cortisol caused it or was keeping it from getting better.

So suddenly I am waiting to see an endocrinologist to be tested for Addison's Disease (& anything similar I'm sure). I am on the third round of steroids, because it always comes back after about a week off. I have numerous symptoms of Addison's (depression, irritability, lack of energy, etc.) that have always been treated separately as a psychological problem. I cannot find a board discussion for endocrine issues, so I thought I would post here. Does anyone know anything about this? I feel VERY alone and scared, I have been sick for over 2 months, and I'm just plain frustrated. My appt. is supposed to be in December, but my ob/gyn's office is trying to get me one sooner (they are more helpful than the GI Doc...)

Anything? Thank you.
Reply
 
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CalGal37 responded:
Lil, if it turns out to be 'hypoadrenalism' or a variation, you can be treated. Once they find the right level to get your body up and functioning again, you should feel a whole lot better. I know it's frustrating, but you need to walk through all the testing before they can end up deciding whether or not something like hydrocortisone will help you longterm.

A lot of people with GI symptoms get tagged with that 'psychological issue' stuff, and it very frustrating.

There's a decent link that gives a broad overview at: www.netdoctor.co.uk/diseases/facts/hypoadrenalism.htm

If you have specific questions there are probably people here who can give you a hand, so don't hesitate to speak up, okay?
 
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LilMissMerrySunshine responded:
Thank you. Of all the research I have done, that was the best thing I have read!

The psychological stuff is long-term. I suffered depression off & on for years, but 2 years ago, it got really bad. I was diagnosed as Bipolar II w/panic. This happened when my grandmother became very ill. Looking at all of the information about cortisol issues, it seems to make sense. It was incredibly stressful, and my body just refused to handle it. I am a very high-stress Type A person, so it's just my luck to be looking at a disease made worse by stress! I have not been on my bipolar meds since I went into the hospital, and I have frankly not noticed a difference, which is a pretty big red flag to me as well.

The cortisone replacement falls in line...because the GI docs are so far out of their league, they have had me on the dose packs. This last time I realized the high doses in the first few days are just too much. So I gradually lowered my dose on my own, and I'm taking one per day until they run out. (I don't typically alter my meds, but at this point I feel like I know more than they do.) It has worked well.

I do have a lot of the symptoms, but I have never noticed the darkening of the skin. I have been surprised at how much this affects the GI system. I am in a constant battle with nausea, and at some point will probably go into treatment for my phenergan/zofran addiction. Since most everyone with GI problems has issue with nausea at some point or another, do you have any advice on other things I can do to combat it? It rules my life right now, and it is especially awful late in the day until I go to sleep.

Thank you for talking with me. I feel a little less alone already!
 
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shawneric12 responded:
In IBS itself there is dysfunctioning of the HPA axis, which is VERY important in stress, but also because it helps regulate so many things.

"The hypothalamic-pituitary-adrenal axis (HPA or HTPA axis), also known as the limbic-hypothalamic-pituitary-adrenal axis (LHPA axis), is a complex set of direct influences and feedback interactions among the hypothalamus (a hollow, funnel-shaped part of the brain), the pituitary gland (a pea-shaped structure located below the hypothalamus), and the adrenal (or suprarenal) glands (small, conical organs on top of the kidneys). The interactions among these organs constitute the HPA axis, a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure."

JUst fyi

Cortisol is secreted in circadian rythm with a maximum 5-25ug/dL in the early morning (8:00 am) and minimum values of 3-16ug/dL in the late afternoon.

To diagnose low serum cortisol (Addison's disease): Serum cortisol taken at 8:00am 20ug/dL [SI: 550nmol/L> excludes the diagnosis in an unstressed individual. Between these values if the condition is still suspected a rapid ACTH stimulation test should be performed. When impaired a long ACTH stimulation test should be performed to differentiate primary from secondary insufficiency. A high plasma ACTH level with a low or normal cortisol level confirms primary adrenocortical insufficiency.

www.doctorslounge.com/endocrinology/forums/backup/topic-71.html

www.doctorslounge.com/endocrinology/forums/backup/topic-71.html

Psychological "stuff'" needs to be treated as well, because it can have a huge impact on symptoms, because as you can see the HPA axis has a lot of functions it carries out, it is also part of the fight or flight responce a very important biological reaction in all humans.



Its no longer what came first, but because of the close connections it all needs to be treated. Your mental state effects your physical state and vice versa and this is more important then some people realize and as your finding out.

You might wwant to find an Endocrine Disease specialist.
 
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LilMissMerrySunshine responded:
We have realized that nobody will ever know what started "the plague" (as I refer to the isolated illness that landed me in the hospital). I could have had a virus that went ballistic and caused colitis, or it could have set off the cortisol response which can cause the same symptoms. It could have been the coritsol all along with nothing else. My poor doctors...LOL.

I was in and out of therapy from the time I was a teenager. Once I started back as an adult, about six years ago, I stayed in with the same person. Sometimes I went a few months without seeing him, but I've never really quit. I am a strong believer in it, and I take it very seriously. It has been extremely beneficial the past two months, because of the depression and all of that that comes along with such an isolating and prolonged illness. My therapist has done our sessions on the phone when I haven't been able to leave the house. He is especially impressed by all of this...he looks at the symptoms of cortisol problems and feels very strongly this could be the answer.

The GI doc got me an appointment with an endocrinologist for Dec. 16th, but they did not send over records or lab reports, so they just put me in the next available spot. My ob/gyn's office pulled my files from the hospital, and they are sending them to another endocrinologist, with the hopes that the extreme results, the relapsing, etc., will impress them enough to get me in to see them more quickly. I am crossing my fingers.

I took my last steroid pill today, so I am just waiting now. My two relapses have been entirely different leading into them, so I never know what to expect.

On a slightly different note, how do you handle the pressure/guilt/stress that goes along with this? My daughter will be five this week, and her b'day party is Saturday (about the right time for a relapse based on the last two months). I have discussed this a lot with my therapist, but I'd like to hear from you. I have missed this entire semester of doing things at her school; she is home today and entertaining herself, because I cannot leave the house and have little energy to do much. When I have good days, I try to do some laundry & dishes, but my husband has carried a lot of that load. My sleep schedule is just screwed, because some nights I'm awake so late with nausea...I might sleep until noon. We have very little family, but they try to help when they can, but there is not much they can do. My father is our only living parent, and he pretends we don't exist. I think this is the biggest obstacle I am dealing with right now. How do you cope while you wait? How do you try to unload the burden from your spouse?
 
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shawneric12 responded:
" pressure/guilt/stress that goes along with this"

There are many ways but one is a CBT. Which has shown to be effective in some IBSers.

Why see a psychologist when the diagnosis is IBS?

"Many people experience distress and anxiety when their doctor makes a recommendation that they see a psychologist. This reaction often comes from the belief that a referral to a psychologist carries with it assumptions about symptoms being ?all in your head? or the result of ?mental illness?. These are two of the biggest misconceptions about the practice of psychology in a medical setting, and they can often stand in the way of patients achieving a meaningful reduction in symptoms. In this column, I hope to dispel some of these misconceptions around psychology in a medical setting, and in doing so communicate a few of the benefits you might be able to achieve in working with a psychologist to address your symptoms of IBS."

www.med.unc.edu/medicine/fgidc/psychandIBS.pdf

September 1, 2009 Topic: "Psychological Approaches to IBS Symptom Management" Presenter: Stephan Weinland, Ph.D. Instructor of Medicine

Watch / Hide video Listen / Hide - audio only

uncfunctionalgi.net/ewe_archive.html

There is also an audio cd out there to help explain IBS to loved ones.
 
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LilMissMerrySunshine responded:
Thank you for your response. I will say that we have always been very open in my house about seeking psychological counseling. My problem right now is the extreme-ness of this particular situation. I used to have bad days sometimes, but now it's easier to count the good ones.

I accepted the bipolar II diagnosis with happiness. It seemed to explain SO much. My husband was somewhat active with my therapy before, and he became even more so after that. I always tell him about my sessions, and I feel like I can tell him anything. I am very lucky to have such a good spouse.

This situation is such a struggle because of the waiting. I have basically now been told that I probably have Addison's Disease, the bipolar/IBS/panic/etc are not separate problems. But I cannot do anything until I can see the right doctor. My fear is the "big symptom" coming back (the uncontrollable diarrhea).

I think the waiting game is some form of torture doctors invented to test our mental stability. I'm stuck in limbo. It is tough for all of us, and I know it is killing my husband. Not only am I more trouble than help right now, but also he feels helpless. That man thing where they want to fix everything and can't? He has it...bad.
 
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AddisonsIBSUlcerativeColitis replied to LilMissMerrySunshine's response:
HI Just wondering if you have an update on your health issues. They sound so similar to mine. Also what dosage of cortisol meds are you taking ? I am at 100 mg at this time..the highest its ever been
 
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AddisonsIBSUlcerativeColitis replied to AddisonsIBSUlcerativeColitis's response:
100mg Cortef, that is
 
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sheba_q replied to AddisonsIBSUlcerativeColitis's response:
LilMiss hasn't been around for awhile - here's her info from the IBS page (updated since this thread).
http://exchanges.webmd.com/ibs-support-group/groupstory/12865804


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