Living with Autoimmune Disease makes me a CrankyPants
Wow, so you have to go through both tests. The anticipation alone, must be scary to deal with. Meanwhile, you have all that stomach pain. You’re going through a hell of a lot. I hope they can move you up and do these tests sooner, as the sooner you get it over with, the better. Even so, these sound like very challenging times for you.
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Thank you. Me too. I’m pretty desperate but it doesn’t seem like anyone cares. The receptionist never called me back and she was cold and dismissive when I called. It’s like, this is my life. You know?
Poor receptionist. She missed an opportunity to be helpful to someone.
Yeah she’s a crap shoot on the phone. Nice in person though. It’s weird.
I was ready to just give up fighting anymore last night. Hubby who would normally say why bother trying told me not to give up. I think he’s worried.
Esophegeal spasms are no joke. They are excruciating and completely disabling. That was one of the first symptoms I had, 20 years before I had a Crohn’s diagnosis. Prilosec and Propulsid helped for a long time, then just Prilosec bc I could get that OTC. I think Propulsid has been banned for being dangerous. Propulsid sped up intestinal transit. One of the worst things that set off my spasms, even after I completely cleaned up my diet, no fast food, junk food etc. was popcorn. I think it’s because it was one of the first things that was GMO. And dairy slows down my intestinal transit to nothing.
Also, your ulcers might not be from acid reflux. A capsule endoscopy showed that my small intestine was full of canker sores/ulcers. If they haven’t looked in your small bowel, it could be full of ulcers too, and that’s definitely not from acid. Small bowel ulcers is textbook for small bowel Crohn’s disease. I think they can only see the small bowel with a capsule endo, and anything else will not show that area. It has been hidden from us for our entire history until now. That’s where the word “hypochondria” comes from, the upper part of the stomach, right where you are indicating. People have probably suffered from small bowel disease for thousands of years, but no one could see it until now, so no one believed it. Well, a long time ago, they just treated stomach problems with marijuana, even though they couldn’t see what they were treating, but now if they can’t see it, it doesn’t exist, and there has been a war on pot for generations. The pain of small bowel Crohn’s literally made me suicidal because it was unbearable, and relentless with only small or no breaks from the pain.
I feel your pain. It sounds like the kind of pain I was in, and the kind of pain I look forward to if I ever have to stop the medical marijuana and organic diet. The only thing that helped me, after I had made diet and lifestyle changes that worked okay for 30 years, was mega doses of marijuana (Rick Simpson protocol, which was originally intended for cancer) and changing to an all organic diet with some restrictions, especially dairy. It was a good year, if not 2, until I started to feel a lot better, but I never got back to my pre-diagnosis state, and the side effects of pot (and AI disease in general, even if it’s controlled) are pretty disabling too. I still have to medicate daily, but at a very low maintenance dose, for now. I hope it lasts. If you have not tried that, it’s the only thing I can think of that might help.
This is what I’m truly afraid of. They want to blow this off as IBS and I know it’s not. My father and aunt both had severe crohns and colitis and I really wonder despite the colonoscopy not showing it, that’s what I may have. Also the progressive nature of it as I said in my video that makes me think it’s autoimmune disease. I’m so sorry you battle it. The pain is so bad. I’m really glad RSO is helping so much.
Did you have mamometry tests done? Did they show anything if so? I’d actually love to have the pill test done but it hasn’t been offered and I’m guessing they don’t have it where we live.
I know in my knower this is not ibs. I do believe I have the gerd and the hiatial hernia. The doc said the hernia is causing friction which is causing ulcers. But, I also get mouth sores, my bowel habits aren’t normal. I had at one time an extremely painful fissure that lasted 8 months. I was in such agony my Hubby made me go to the hospital and that’s not like him. There’s just so much that = autoimmune to me. I’ve tried the diets and all script meds and nothing has helped. The only thing that brings short term relief is Eno. How do I get the doc to dig deeper? The surgeon will actually listen. With it running in my family, the progressive nature of it, and many other symptoms I have to believe it’s IBD as well as Gerd/Hernia. If only I could get a doc to take me seriously.
I might see if some of our shops around here sell RSO. I’d really like answers before I attempt taking anything more. I also wonder if being on Actemera can mask IBD.
Also do you think going to emergency would actually help get me help quicker? I guess it depends on the Docs.
I went to the hospital once right before I was diagnosed but it didn’t do any good. They suspected “female trouble” due to my age, sex and abdominal complaints, and didn’t even consider I had a bowel issue. And I knew better than to go at all for a month after my worst pain started bc it was lower right quadrant pain and I knew they would suspect appendicitis! I’m so glad I didn’t give them the chance to cut me open bc it would have been a misdiagnosis, completely unneccessary surgery and abdominal surgeries cause adhesions in Crohn’s patients. And here, if you aren’t going to die, they don’t do much in the ER. They might do some cursory tests, but even with the right testing, if your disease isn’t extremely developed, it won’t show up on anything.
I had been having symptoms like esophegeal spams for 20 years and my disease was progressing that entire time, before I had a colonoscopy that showed ulcers at the very end of my colon. Another doctor might not have even seen them bc it was at the very end of what they could see with a scope, very deep inside in the terminal ilium, between the small and large bowel. The entire length of my colon was fine until the extreme end. It made him think that there were ulcers even farther in, into my small bowel, and he was right. I’m not sure small bowel Crohn’s is as common as large bowel Crohn’s. Maybe your doc doesn’t even know about it. Seriously, Google “hypochondria” to see that upper abdominal complaints — complaints involving the hypochondria region of the abdomen — have been dismissed for hundreds of years. It’s really stunning that the word “hypochondriac” comes from the region of the upper abdomen, and that real complaints involving that area are routinely dismissed.
As for getting answers, look at who you are expecting answers from. Doctors who probably don’t even know or connect the dots that the “hypochondria” is the upper region of the abdomen, and that the word has 2 meanings because of them dismissing sick people’s real complaints. Also, people didn’t used to have “answers” like biopsies or imaging results, bc those technologies didn’t exist. Marijuana can be expensive, but for most people it doesn’t cause side effects beyond “euphoria” and it has been used for thousands of years for stomach problems in particular. The only “answer” ancient people got for millenia was that if it responds to MMJ, it must be something that responds to MMJ. That’s good enough for me. If I were you, and I was, I wouldn’t hesitate to spend my last dime on mega doses of MMJ for at least a year and see what happens. At this point, you have nothing to lose. I don’t know if you are feeling suicidal, but I was, after having the kind of pain you are describing for 2-3 years without a break. It was unbearable. And if it’s a progressive disease, it’s only going to get worse.
The only regret I have is that I thought MMJ would be a cure. There is hype in the MMJ community too about what MMJ is realistically able to do, and I wish I hadn’t fallen for it. No one believes or wants to believe that there are diseases that have no cure, but there are. MMJ is an effective treatment though, unlike anything my GI doc ever gave me. He basically told me, in not so many words, that the only thing that was going to help was MMJ. It was illegal in NY at the time, so he couldn’t come right out and say it. But at one point after all my conventional treatments had failed, he told me to use my intelligence and research skills as an attorney to research available treatments. I think that is what he was getting at, and he just couldn’t say it, and he also couldn’t tell me that all the treatments he could offer me weren’t going to work. He was a good doctor, and I think he respected me as a professional and that if he was really telling me to use MMJ, he went above and beyond to help me find some relief. There just wasn’t anything he or Western medicine could do.
Thanks so much for all this. I’m so going to Google it. The surgeon actually asked me just before he did my scopes if I’ve tried marijuana. That surprised me. I told I had in the past and just didn’t like it/ the taste and smell. He said at least you’re honest. Lol
It sounds like you have a great doc. I’m so glad although not good news, you got answers and some relief. Some is huge. I know.
I wouldn’t say I’m suicidal but I’ve felt ready to give up fighting, fighting to get better quality of life and fighting with docs for help.
I’m weary and I just feel like a burden to the medical world and my Hubby. (My Hubby doesn’t make me feel that way I just do).
I’m going to so see if RSO is available around here as marijuana is legal here.
It’s stunning that hypochondriac has this other meaning.
I’m guessing if I went to the hospital they’d not listen if I told them this is an ongoing stomach/bowel issue not a female issue.
They might give me something for pain or not since I’m already on pain killers and send me packing.
I just wondered if they’d do a cat scan and or ultrasound and if they’d show anything.
Or if they knew about the the gerd and hernia they’d look beyond.
Add in Covid, that’d probably be their first diagnosis. Lol
When I went to the hospital, they did all the female tests, so at least I had those results to show the GI doc when I first saw him. He would’ve had to order the same female tests, to rule it out, so I hit the ground running with him, at least. I had seen him before for acid reflux and he took my insurance when I was working. By the time I was really, really sick, I was unemployed, and self-pay, but he saw me anyway because I already had a file with him. It ended on a sour note when I had to get on Medicaid though, and he fired me bc he didn’t take Medicaid, and it’s illegal for a doc to accept self-pay from a Medicaid patient. That’s when I knew I was fucked. That’s when I decided to give up on Western medicine, which includes this hideous bureaucracy I was too sick to even begin to deal with and the treatments weren’t working anyway. Good luck, I hope you find some info that will help.
That sounds so terrible. It’s all about money not the patient/person anymore. It just sucks.
Thank you. I’m glad RSO is bringing you some relief. Hugs.
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