Crohn's associations with DLE and pancreatic,liver cirrhosis

[Christy_cd]

hello, are there any of you like me, it's been months since I had to go to the hospital because of excruciating pain in the lower right, shortness of breath, frequent bowel movements, my skin is red, itchy and has a headache when exposed to the sun. with blood test results that are always changing can't be used as a marker, even CRP is negative and very low, only a biopsy can diagnose Crohn's Ileocolitis, due to active arthritis in the lumbar vert, my specialist referred me to be tested for possible RA, psoriasis arthritis or Ankylosing spondylitis, predictably after abdominal ultrasound, another oddity was seen in my organ, the pancreas was abnormal in size and shape, with abnormal splenic veins, liver fibrosis and the results were contrary to the FibroScan which showed cirrhosis, and I was referred to a surgeon for a biopsy skin, with a diagnosis of discoid lupus, even for a cough that doesn't stop for months it hasn't been checked because it still has to wait for the MRI schedule and wait for other diagnostic results👈after being given medicine for Crohn's, now the pain has changed to the upper right and is spreading to the middle of the back and shoulders

[012703060610]

I don't have any specific advice here, but am glad you are referred to the appropriate professionals. I spent a year fighting with GI docs that I had more going on than microscopic colitis. I was referred to two different Rheumatolgoists who all said I was just depressed. Then I went on a two year quest for a real diagnosis at three academic centers. I am now familiar with every disease you just named. I have 5 different autoimmune disorders so maybe can help in the future. I'm so sorry as I know how frustrating it is when we can't figure out exactly what is happening to our bodies!

[Christy_cd in reply to 012703060610]

for the microbiome, don't you realize that all those who complain are sufferers of IBD, IBS, maybe it's mucus in stool and for yeast it's from candida albicans, in my country fortunately the physician here immediately proposed me a skin biopsy to find out if there's an invasion of the microbiome, based on history My diseases all exacerbate other conditions. And the physician here is used to parasitism because it's a tropical country, but finding out about Crohn's and the Crohn's community is very difficult, because Crohn's here is rare, so I'm looking for everything about Crohn's, at least I can find out what the next step, while my blood tests always have different results, and sometimes the markers for inflammation look normal, it can only be known through taking new tissue to know if it's chronic and inflammation has spread, it's very frustrating when you meet a new physician because they think only my imagination , even though I have said to immediately check the MRI or take the tissue, sometimes if it is funded by the government, some only look at the blood and physical test results, while to be physically seen I look normal, but I feel the pain, I wish you get the best physician who will listen to you

[012703060610 in reply to Christy_cd]

I have an amazing Rheumatologist now that knows all my 5 autoimmune diseases inside and out. He even talks to my other providers if we have some drug interaction issue or he has questions for them. We are on a text basis. As for chron's, has anyone talked to you about LDN? Sharing an article in case you have never heard of it. Changed my entire prognosis and was able to reduce my weekly immunosuppressive meds.

I feel your pain on how some doctors operate. I had to move to a state with really poor medical care and actually travel across the country to get some of my care. I landed at Mayo, Brigham and NYU for full and complete diagnosis. The NIH has also offered to look at my records given one of my diseases has only been reported in history less than 30 times. Once I gave up on the local doctors, I made it my mission to get to diagnosis. It still took two years for all, but people go decades not knowing what is wrong. I'm glad you are working hard to understand all and love that you push your doctors for the right solution. I need a new colonoscopy as I was on prednisone (super high dose) and any results were irrelevant because of the prednisone. I constantly have yeast in my throat, which is so gross! I have to keep reminding my GI doctor he made me do it for no reason and I'm way over due for one.

LDN article. Saved my life. I'm allergic to all pain meds but Tylenol and this really helped on the pain front for my joints and back. It also help with mood and most of us need a little pick me up when dealing with diseases so complex. Will be thinking of you.

translational-medicine.biom...

[Christy_cd in reply to 012703060610]

oh my God, I'm the same every time I cough, sometimes a small splash of blood or yeast comes out of my mouth, I think there's something strange about my body and I start to see oddities in my stools, and all my family says I'm hallucinating, that's what made me find out about IBD, because this community makes me feel like I'm not a weirdo. fortunately the parasitologist immediately did a biopsy, because I told all the autoimmune diseases that my siblings had, it made it easier for the physician to detect what possibilities I had, and I couldn't count how long I spent on Google to find out about the autoimmune disease that I had, because I always come alone don't want to bother my family to the physician, they tend not to want to tell me the truth, I'd rather be told the worst though, than not be told clearly, now I'm faced with the possibility that my lung has fibrosis, waiting for the schedule ct scan, and this can be caused by liver, crohn, lupus and I hope it's because of one of those, not because I have dermatomyositis 👈that's what my late brother had, because my late brother's initial diagnosis was scarring due to chronic bronchitis 👈exactly the same as my x-ray results 😒now I'm not surprised anymore if there is another autoimmune addition to me.. what's frustrating is that my blood results are normal and I feel relieved, but as soon as the results of the body tissue come out it turns out the diagnosis is very bad, it's always like that every time I detect it each autoimmune that I have, even now if my blood test results are good, I don't believe it anymore, precisely because of this makes me stress, can you tell me about yeast in the throat what are the symptoms you feel, I'm very sure you have the same thing as mine and I'm so glad you got an amazing rheumatologist, that's what we need...I've never heard of LDN, as I said here Crohn's is very rare, people are more familiar with lupus, rheumatoid arthritis, Sjogren, and for multiple autoimmune it's even rarer, maybe it's only my family that the whole family has multiple autoimmunes except my mother she doesn't have autoimmunity but she's a carrier

[012703060610 in reply to Christy_cd]

My yeast presents due to the number of antibiotics I take. My immunosuppressive meds are saving me, but also causing me to get numerous infections. I have three young kids too, so it's very hard to stay well holistically. When the yeast is present, it feels like I have something stuck in my throat and it grows in size and then into a little pain. Of course it's just another med to take! My issues all started after severe COVID. I have Behçet's disease, Ehlers Danlos, Mixed connective tissue disorder, microscopic colitis, and then the BAD one .....Relapsing Polychondritis. I do have all the facts and unfortunately my timeline is limited. The last disease attacks cartilage all over your body and you never know where. The hallmark symptom is dark red pinna of the ear. However, it has pretty much taken away my nose and it is impacting my airway. I've already had a stroke so that is a possibility at any moment. I pay for some expensive voice therapy to try to help breathing flares. The airway just gets eaten and turns into scar tissue and gets smaller until you eventually need a trach put in. Could be today, could be 5 years. The meds work to some degree but it doesn't seem to be enough to keep that particular disease from progressing. Initially I had a ddx of Lupus and some markers for celiac. In the end I meet all the criteria of Lupus but at this point, how can there be any name for all that is happening. Of course insurance and disability need actual diagnoses, but autoimmune things are so misunderstood. I'm sorry your family doesn't get it. Neither does mine. They understand my Mom's Parkinsons, but nothing in regards to how I have to manage through a day. It's a slog! I also think I grew up around too many chemicals and the water may have been bad. OYE!

[Christy_cd]

haha now my autoimmune has progressed from dle to sle due to inflammation for too long and they forgot to give me a painkiller only prenidsolone, because the rheumatologist still can't diagnose me with certainty which type of reactive arthritis is related to autoimmune, now it's polyarthitis neuropathy,crohn's, so all i got is salsazaline , sulfracate, prenidsolone, after a few months I just confirmed dle, hypertension is not controlled, meanwhile I haven't gotten arthritis medication yet, and all lab markers are always changing, I have a severe dry cough, and arthritis is getting worse, confirmed dextra syndrome and carpal tunnel syndrome, and finally progressed to sle, because I was so exhausted that it triggered shortness of breath, arrhythmia, I really hoped to get confirmation what the problem was in my lungs but the x ray results changed one hospital said normal with a normal heart, grade 1 distolic, and grade 1 heart failure no need for treatment, while another hospital diagnosed bronchitis, now I started to feel a lot of gas in the stomach, I thought this was ascites related to the liver, and started to feel a very cold sensation and chest pain to the spine, persistent dizziness with ear and jaw pain, episcleritis , because I'm so fed up with all this, I went to an expensive hospital at my own expense, and that made me much better, and was given medication for esophageal reflux and chronic pancreatitis, plus NSAIDs, but for bone pain I'm still waiting for a diagnosis and was referred to an oncologist regarding a lump in the breast 👈 and all of this in just 4 months it developed like this, and I had a hunch that the results of the mammary Doppler ultrasound were not good, because a senior radiologist immediately examined me while discussing with his colleagues, around my chest began to inflamation before its not

[Christy_cd]

actually all my siblings really understand about sle because they each have their own systematic autoimmune, they just don't understand crohn's, sorry if I ask too many questions here, because I really can't ask my siblings, they say I ask too many questions and complain and they have experienced more than ten years 👈I ask because I have absolutely zero experience with this, and they don't go straight to all organs and develop autoimmunity within 4 months like me, they years later develop to others.. I just want to know is this normal if every test result is different, now i will never talk about this with my family, and i better chat with myself, thank you for your hospitality, I hope your health is greatly improved and you don't experience like me