Ok, there have been a few threads recently that flirted with this concept, but I would like to offer a safe haven for those who have Chronic Health Problems. Not Mental Health issues or Hypochondriacs or those who 'get sick' and proceed to 'get better,' I am talking about those of us with physical conditions that we live with and try to 'placate' in the long term.
Because for us there is no real 'cure' or 'getting better,' there is 'remission' and 'flare-up.' If we feel depression, it's not due to brain chemicals being goof, it's due to the crippling physical pain that saps strength. We are those that go to the hospital and know more than the doctors do unless they are specialists at the top of their game. We have been around the block and know when a doc is lying to make you feel better, rushing to get you out the door so he can deal with an easier patient, and when a doc is actually taking his time because he gives a shit about what happens to your ass.
So let's share stories and updates on these lifelong conditions of ours. I've got a few stories, but I'll start with a brief description of my condition and an update on where I stand.
Munkus Problems:
Crohn's with the complication of a Colectomy (I had my colon surgically removed because they were sure I had colitis, they are wrong in these scenarios about 10% of the time apparently).
Dealing with Crohn's since I was 13, so about 13 years of Crohn's or about half my entire life. Crohn's also causes/is related to my other issues (anemia, arthritis, psriosis, chronic epdidymitis, fistulas)
My update is not good! I am posting from the hospital bed that I've been in since Weds. I recently talked to a surgeon who had a look at my pouch (the area of my small intestines that replaces my colon in function is called my 'J-pouch' and lets me function without an ostomy). He described it as an inflamed mess down there with multiple cavities, abscesses, and fistulas throughout the rampant inflammation. He went in to 'drain a perianal abscess' that had been discovered using an ultrasound scope with a needle and a cathater. However, the abscess wasn't pus filled, it was basically just a cavity. He still inserted a catheter into the area in case it might help the area 'drain' or close up but was not hopeful. Most tissue heal like this is soft tissue capable of healing. He described the area which he put the catheter into as "crunchy tissue" that was heavily scarred and strictured as opposed to, you know, flesh. He said he could feel the crunch when he inserted the needle. I asked him if this cavity was the cause of my pain, to which he replied "You really have so many things down there that would be causing you pain it is hard to say isolating and fixing any one of them will give you relief." He rather reluctantly explain that he felt the only real option was to create an ostomy, either diverting or permanent, as I am on some of the 'most powerful crohn's medicine possible' and things aren't looking up. He explained that really, something needs to be done because the disease is winning and we are basically getting to the point where we are watching me lose weight and slowly die.
tl;dr - My update is that my Crohn's is winning the battle and the war against my body.
How about you, fellow chronic physical illness sufferers? Let's compare scars and war stories, vent about doctors and other such bullshit, share updates and reveal our sordid past with our diseases and cancers.
Because for us there is no real 'cure' or 'getting better,' there is 'remission' and 'flare-up.' If we feel depression, it's not due to brain chemicals being goof, it's due to the crippling physical pain that saps strength. We are those that go to the hospital and know more than the doctors do unless they are specialists at the top of their game. We have been around the block and know when a doc is lying to make you feel better, rushing to get you out the door so he can deal with an easier patient, and when a doc is actually taking his time because he gives a shit about what happens to your ass.
So let's share stories and updates on these lifelong conditions of ours. I've got a few stories, but I'll start with a brief description of my condition and an update on where I stand.
Munkus Problems:
Crohn's with the complication of a Colectomy (I had my colon surgically removed because they were sure I had colitis, they are wrong in these scenarios about 10% of the time apparently).
Dealing with Crohn's since I was 13, so about 13 years of Crohn's or about half my entire life. Crohn's also causes/is related to my other issues (anemia, arthritis, psriosis, chronic epdidymitis, fistulas)
My update is not good! I am posting from the hospital bed that I've been in since Weds. I recently talked to a surgeon who had a look at my pouch (the area of my small intestines that replaces my colon in function is called my 'J-pouch' and lets me function without an ostomy). He described it as an inflamed mess down there with multiple cavities, abscesses, and fistulas throughout the rampant inflammation. He went in to 'drain a perianal abscess' that had been discovered using an ultrasound scope with a needle and a cathater. However, the abscess wasn't pus filled, it was basically just a cavity. He still inserted a catheter into the area in case it might help the area 'drain' or close up but was not hopeful. Most tissue heal like this is soft tissue capable of healing. He described the area which he put the catheter into as "crunchy tissue" that was heavily scarred and strictured as opposed to, you know, flesh. He said he could feel the crunch when he inserted the needle. I asked him if this cavity was the cause of my pain, to which he replied "You really have so many things down there that would be causing you pain it is hard to say isolating and fixing any one of them will give you relief." He rather reluctantly explain that he felt the only real option was to create an ostomy, either diverting or permanent, as I am on some of the 'most powerful crohn's medicine possible' and things aren't looking up. He explained that really, something needs to be done because the disease is winning and we are basically getting to the point where we are watching me lose weight and slowly die.
tl;dr - My update is that my Crohn's is winning the battle and the war against my body.
How about you, fellow chronic physical illness sufferers? Let's compare scars and war stories, vent about doctors and other such bullshit, share updates and reveal our sordid past with our diseases and cancers.