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Hi everyone,  Hoping we could generate a conversation about how our folks have dealt with the emotional stresses of living with chronic illnesses.  After over 20 years with a j-pouch, two hip replacements, Crohn's diagnosis in 2012, a dilated pancreatic duct last summer which scared the shit out of me (it has since returned to normal), I find myself paralyzed with fear about every little ache and pain.  I had a "bug" this week (I teach middle school) and this morning I was so overwhelmed with anxiety that something was very wrong, my husband took me to the ER.  After 3 hours of blood and urine labs, chest x-ray, and a CT scan, all was totally normal.  To make it even worse, I just had complete labs done two weeks ago that were normal.  I wonder if the pain I have everyday is a result of the emotional issues?  I would so appreciate if we could get a good conversation going about this.  I wondered today, how many of you out there are suffering with this too?

 

Thanks so much.

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Hi Lisat

I understand perfectly...maybe it is because I was born this way, maybe because I have never known 'normal' or 'healthy' but everytime that something is off, strange or hurts I have a horrible feeling that it is yet another disease or body part about to break down.

I am lucky  that I do not have an anxiety disorder. (it is a miracle)...don't know why, maybe because I was not allowed to  give in, cry or get depressed.

I was brought up in a sort of bootcamp atmosphere when it came to my illness...sympathy was not going to do me any good so my dad made me into a fighter (it was how he showed his love)...it helps.

For 20 yrs I was alone in a foreign country and had no one to rely or depend on so self-sufficency was a goal... I  go all Mcgiver...I look for solutions, I use checklists, I go over things in my head...I try to figure a way around or out of things (makes me come off arrogant towards useless medical staff and dumb people but that is the price I pay for sanity)...I get agressive...I am also somewhat of a loner (altough I do have a few good friends, this disease isolates you a lot and forces you to be shut-in too often...always cancelling at the last minute).

We all create techniques to manage our fears and stresses...some use talk-therapy (although it is hard to find someone who understands), some use meds to get over the hump, others are lucky enough to have a kind friend or family to help...most of us use this site to help us through the worst of it.

We are here and we do understand....

Sharon

I have survived with inflammatory bowel disease since I was 9 years old and I am now 52 years old.  I have had 4 bowel surgeries. I have been in a high stress profession (trial attorney) for 24 years and still going strong.  Last year, I dealt with thyroid cancer which had just started to metastasize into my lymph nodes, and more recently I have been dealing with the pain of a pinched nerve in my neck.

I turn fear and stress into positive energy and work ethic.  I think it's just my personality.  When I received the cancer diagnosis, as well as the news that I would have to have surgery and radioactive iodine, I had a much different reaction to it than I would have imagined I would have. Not that I ever sat around wondering deeply how I would react if I was told I have cancer, but the reaction I had was not one I would have anticipated from myself.  I felt completely at peace and comfortable with whatever happened to me, including death from complications of surgery.  As things turned out I got very lucky, the metastasizing cancer was caught very early and it didn't appear to have gone very far from my neck in metastasizing.  The surgery went well, and now it's presumed to be completely irradiated from my body based on the follow up scan I had, and my TSH levels have been good.

I have never been one to get caught up in pity parties or fear or stress.  The only things I can control I do, like trying to eat well, taking my meds, living a healthy lifestyle, etc.  

I have found that the camaraderie with people like myself who have Crohn's Disease/CD like symptoms and inflammation, in support groups, has been a big help.  I founded a dinner club with 3 ladies in my CCFA support group, all of whom have Crohn's Disease, and this past Saturday we did a brunch at a local gluten free/vegetarian restaurant.  Networking with others has helped me informationally, and probably to some extent emotionally as well.

 

Last edited by CTBarrister

You are not alone. I have been suffering with chronic pain every since my surgeries over 5 years ago.  I need narcotics daily.  I went to the ER the first time in my life and was diagnosed with a UTI.  It was 3 months after my take down.  I was embarrassed because I was sure something much worse was going on. UC pain was different.  

There are many of us on here that need to take narcotics.  I am never pain free.  Besides my j-pouch related pain I have other chronic illnesses and syndromes.  My last surgery on 8/31/15 was to divert away from using m j-pouch to a permanent ileostomy.  During what was to be a 1.5 hour surgery turned into 4.5 hours as my surgeon spent 3 hours lysing adhesions in my abdomen.  I was sure the pain would go away.  It didn't and now my j-pouch is going to be excised on March 24th.  The position of my j-pouch in my abdomen causes back pain as well as the feeling that I liken to labor pains.

Sorry I veered off of the subject.  I don't think your pain is caused by your emotions.  You might need to see a therapist about your anxiety and/or see a doctor for anxiety and/or depression medication.  Chronic pain day after day after month after year that never goes away is damn depressing. It may be situational depression and/or anxiety that will go away once your pain is managed.  My Internist prescribes my pain medication as the specialists don't usually prescribe pain medications after the ones they send us home with after surgeries.  

I hope some more members will post about this too.  It is a good topic. 

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