the_watdabney

I have been dealing with chronic bowel issues since I was a teenager (mid 40s now). I have been having colonoscopies since I was in my mid 30s to look for inflammation, which has never been observed (multiple polyps removed though). I do have an autoimmune disease, Ankylosing Spondylitis, and have tried a few biologic medications with limited results for my joint issues. I've tried many different medications for my bowel issues, both over the counter and prescription, but none of them have helped at all.

My symptoms are basically chronic diarrhea on a regular basis, usually a couple hours after a meal. This is typically 4 out of 7 days of a week, but some weeks it's constant. I also have bouts constipation at the same time, if that even makes sense. The doctors say it's just IBS and to take mylanta or pepto bismol. None of that makes a difference.

I've changed my diet multiple times and no matter what I eat, the same thing happens. Usually vegetable rich meals cause more problems, and after my meal my bowel movements are still recognizable as food. What can I do to help lower these symptoms and stop being a slave to a bathroom every day?

I started having pain in my joints in my late teens and early 20s. I spent the next 10 years having random pains in random joints at random times. I had no insurance and therefore could not afford to go to the doctor very often, but when I did, they would send me away with the usual, "You're too young to have these problems." I would be told to take tylenol or acetaminophen, and rarely was I ever sent to have x-rays or any other diagnostic testing, usually showing nothing, and I believe I was labeled as a hypochondriac. My family also began disregarding my pains as me overreacting or exaggerations.

I then had an injury to my spine from a fall when I was 28 (in fact on my 28th bday). This healed after a few months but the doctors told me I would always have pain because of the injury not healing properly. I spent the next 5 years trying to get back to normal, yet my pain got worse in my spine and other joints.

When I was 33, my pain had become so bad I was missing work regularly and still without insurance I had racked up thousands of dollars in MRIs, CT scans, blood work, and other specialist appointments. I was finally sent to an orthopedic doctor who asked about my family history and ordered a specific blood test to check for HLA-B27. That came back positive and in conjunction with my family history and other specific blood test, he determined I had Ankylosing Spondylitis.

I have only become worse and have spent the past 7 years not being able to work, and applying for disability. I have been on just about every medication under the sun, including NSAIDs that cause me stomach issues and a few ulcers so I can't take them any more, and biologics like Humira, Enbrel, and Cimzia. Each one of the biologics I was on for about a year before the doctor stopped the medication as it was not giving me any relief or stopping the flare ups. I have been on daily Tramadol, Gabapentin, and Tizanadine, and the effect of them is no longer able to control the flare ups that are becoming more frequent and even more painful in my lower back, mid spine, SI joints, left shoulder, left hand, both knees, both feet, and even my toes. My doctor seems to be out of ideas to help control these symptoms.

What could you recommend to someone in my situation to try next? How can I alleviate the flare ups without being heavily reliant on pain medicines? These flares can last weeks at a time in my SI joints, making it nearly impossible to walk for more than a few steps before the pain is unbearable. What can you say to the issues of doctors being apathetic to someone's issues due to them being "too young to have these problems"? What can be done to train doctors to not pass off people as just hypochondriacs or exaggerating their symptoms? I believe that if doctors had paid attention to me more in my mid/later 20s, I would not have as much damage in my joints as I have now.

How close are we to better treatments and less dangerous medications, i.e. the biologics that have risks such as lymphomas? I understand that it is the immune system that is attacking me, but there has to be a better way than shutting the immune system down. If I had still been on a biologic last year, I could have been hospitalized after a kidney stone, causing a kidney infection that then turned into colitis.

Sorry for the long post but living with this disease has taken over my life and stopped me from enjoying anything I used to enjoy. I have friends and family who constantly say I'm faking it and don't believe I'm in as much pain as I am, and having passed many kidney stones in the past 8 years, I would put the pain in my SI joints and other areas as just about the same as the passing of kidney stones. It is hard to do anything while that pain is effecting me and it is coming more often and lasting longer every time I have a flare.

I was diagnosed with Ankylosing Spondylitis several years ago, but had been showing symptoms for nearly 20 years (since my late teens). I had no insurance for much of that time so any time I did go to the doctors, I was basically just mounting debt with no answers as no doctor would do anything but send me for an MRI and tell me to take tylenol (no evidence of problems, yet chronic debilitating pain off an on for years).

How do people convince a doctor that the issues are real? How can anyone get a diagnosis if there is no attempt to dig deeper into family history or any other medical tests?

Now that I have a diagnosis, I've been being treated with biologic infusion therapy (Avsola every 8 weeks) as well as NSAIDS (Nabumatone 1000mg/day). I'm in the process of changing Rheumatologists and the new one says that the medicines I'm on are not very safe for long term use. I've known this from my own research into my condition, so what are the alternatives? The Avsola is supposed to be slowing the progress of damage to my spine (degenerative disk disease, bulging disks, compressed disks, multiple levels of osteophytes from my cervical, through thorasic, into lumbar and in my SI joints, which were described as "near fusion"). The NSAID I'm on is the only one that I've been able to take without severe side effects, but my blood work has been coming up with various levels (kidney and liver numbers) being above normal range for a long time now. The rheumy says she will be changing my medications in the near future. What else is there to be looking at? (She mentioned an oral biologic to replace the Avsola, but can't remember the name at the moment.)

I haven't had a major flare up since I started the Avsola, but have had increases in pain frequency. What used to be once or twice a month of real bad days has turned into several days each week. I finally started receiving disability this year after years of struggle and fighting for it. I can barely make a meal without having to collapse afterwards from the pain. I'm 45 now, what is my future going to bring?

(I realize this is a lot of questions and probably most you can't answer without my full medical history/record. Just looking for general advice for moving forward and trying to restore some of the life I've lost due to these issues.)

edit:Realized I didn't even mention the mental health issues I've dealt with over the years, but they are just about as severe as the chronic pain and other issues... Diagnosed with BPD in teen years, many different meds and hospitalizations all through late teens, 20s, and 30s, even had an episode 3 years ago which landed me in the hospital for 12 days.

I just started Avsola (Remicaid bio-similar) last week and my second loading dose is next week, so in another month I'll be able to tell if there is any benefit. I can't remember which one, but either Enbrel or Cimzia seemed to lower the IBS symptoms but only like 10-15% at best. Didn't do much else for my joint issues.

I've been through 3 colonoscopies and each one has shown no evidence of inflammation, so the doctors have ruled out any Colitis or similar condition. (although I did have a C. diff Colitis infection a few years ago, but that was attributed to an infection that spread after a kidney stone caused a bladder infection.... so say the doctors, but I still don't understand how that worked)

Who gave you the diagnosis for the IBD? I've been dealing with this for decades and it has only gotten worse over the years. My doctors all just say the same thing... "It's IBS, take some Mylanta, Imodium, or Pepto."

Thank you for the positive energy.

Please don't think that just because your rheumatoid factors are negative you are in the clear. I have seen plenty of medical evidence saying that the R-factors are not always a definitive test and sometimes those who are negative are still able to have active arthritis (not a doctor, just sound advice). Insist on more tests, mainly when you are having current and active pain. My biggest problem in the beginning was I would be in pain and I'd make an appointment with my doctor, and by the time of the appointment, or subsequent tests, my pain would subside, making any test for active inflammation come back negative. All of the medical studies I have read through since my diagnosis suggest that the combination of family medical history, blood tests, and imaging (x-ray, MRI, CT) are needed to make a positive and definite diagnosis.

One small thing you can do at home is to take NSAIDs (Alieve, Advil, Asprin) when you have joint pain and if it helps the pain significantly, that is a good sign it is from inflammation. This is good to help minimize the inflammation, but be careful of taking too much for long times as this is what caused me to have issues with ulcers.

Good luck and thanks again for the reply and positive thoughts.