Newbie looking for help.
Hi.. I'm a first time poster. And to be honest I'm not certain I have IBD. I've had distended intestines off and on for many years, that were not much more than a nuisance. Then seemingly out of the blue (16 days ago), I had urgent, bloody diarrhea. And it basically hasn't stopped (much) since then.
I'm in my late 40s, no active health ailments, thin, don't take any medications, etc. I have just been sick for over two weeks solid. Went and saw my general practitioner, who was basically little help (other than a referral to a specialist, and stool tests that were clear of bacterial infection). He advised just keep taking Pepto/Immodium (they didn't help).
I've eliminated all dairy and wheat, and my sprints to the bathroom have declined from about 7 times a day, to thankfully 4 or 5. Eating mostly boiled potatoes and rice. But the urgency has kept me from working, because there is (potentially) not enough time to make it to a toilet if I'm out on the road working.
I've been reading how a lot of warriors in this forum deal with much worse symptoms. So I thought this would be a good place for receiving first hand advice. Do these sudden symptoms comport with your initial IBD experiences? Any advice on coping?
I'm reading online that flare-ups vary widely in length of time.. but I'm curious what has been your typical time-frame? My doctor didn't seem alarmed by my weight loss, or the extended diarrhea, but I'm getting close to hitting the panic button. Is it typical to improve for a day, then get bad again.. this has been a demoralizing aspect for me. I keep thinking I might 'turn a corner', but..
If you have any advice, please share.
peace
ps- I also wanted to ask, other forum members' thoughts on stress. I'm raising a teenaged daughter with profound mental health issues. And if stress (almost alone) could be the trigger for IBD? thanks again, looking forward to any feedback.
Thank you for your question, @BabeRuth. I am sorry you are enduring so much stress. Raising teenagers can be stressful for anyone, and doing it alone is especially difficult. I think you will find many answers to your questions in this article here:
https://inflammatoryboweldisease.net/living-with-cd/stress
Stay strong!
--Julie (Team Member)
This is not to scare you, but it was when I started bleeding that I knew something was wrong. I saw a GI and was then diagnosed. Have you seen a GI yet? Definitely ask to be tested for IBD. Usually it consists of blood work, stool test and colonoscopy with biopsy. Stress definitely exacerbates symptoms. But the moment you mentioned you were bleeding that is pretty telling. Although, I will say that my boyfriend had some bleeding and it wasn't due to Crohn's but due to colitis. He healed quickly after. Overall, it is just very important to see a GI and get testing done. -Elizabeth (team member)
Hello! I have a question, when you say it wasn’t Crohns but colitis, do you mean Ulcerative colitis or is there another form of generalized colitis? I can’t seem to get an answer. When I google “ colitis” it always comes up with UC. Thanks for any info you might know. Yes, you can just have colitis which is (inflammation of the colon) and heal from that. This happened to my boyfriend. He had an episode of colitis in which we had some blood but it was not severe bleeding. He quickly recovered after doing a liquid diet and resting. It took him about a week or two. Ulcerative colitis is something entirely different. It is an Inflammatory Bowel Disease and is autoimmune. Through testing they will determine which it is. I hope this helps some. Let me know if you have any further questions. Big hugs, Elizabeth (team member)
Thanks for responding.. yeah I have an appointment with a GI in about 3 weeks. My general practitioner didn't want to do any blood tests, etc.. so I'm hoping that's where the GI will start.
It's disheartening when I see other people who've (also) had little to no help from their regular docs. Mine basically dismissed 2 weeks of diahrrea because I'm in otherwise good shape for a middle aged man.
This episode came completely out of the blue, and I'm hoping will end just as quickly.
My 'gut' instinct is that it was initiated by my stress load, dealing with a severely mentally ill daughter. We'll see..
I'm curious, is there a typical length of time for flares. I've been sick for 2+ weeks ?!
hi!
I was diagnosed with UC just this February, and boy has it been a ride.
For the last three years, I've worked with a company that contracts with our local utilities to survey their gas facilities for leaks. We'd walk all the lines and meters with a sniffer and report leaks in for repair. Needless to say, my average mileage was about 10-12 every day. And we got to travel to many cities. It was a great job, but I started to deal with some unknown fatigue that convinced me to change jobs this last December. And I'm glad I did. I took a job at a local bank as a teller, going through the training and getting used to the environment. I noticed minor blood in my stool shortly after I started, and thought, meh..just a hemorrhoid. A month later I'm bleeding a bit more. I hadn't realized how involved being a teller was, but I stressed over dealing with the people. They can get quite rude over their money, lol.
One day, my backside exploded with more blood loss and diarrhea, and I thought oh hell, time to call the Dr. He gave me a referral to the GI Dr and called to expedite a colonoscopy. I still had to wait 2 weeks, but was happy about that. I told my bosses about my issues, and my suspicion of what it was, and they were great with making sure I had access to the bathroom, and giving me time when I needed rest. And time off for the colonoscopy.
When I woke up, it was to hear I had severe left sided UC, and that the damage was quite extensive. I was like, but I was just fine a few weeks ago...and shortly thereafter I had to take a leave of absence. Because I was new still, I didn't qualify for FMLA, but they gave me an intermittent leave to get my diagnosis and treatment plan on board. I ended up just not going back in. I was that bad. The massive blood loss made me anemic within the week, and I had no energy to do anything but race to the toilet 30 times a day. And the pain.. oh I wouldn't wish it on my worst enemy! No sleep, and lost 30 lbs in just a few short weeks. The GI doc who was going to do my scope had me admitted to the hospital to get it done, things were that bad.
So they put me on 40 MG of prednisone with a month long taper, and we decided to go with Humira and Azathioprine for a long term biologic. I send in this info to my HR department and they grant me a month long leave to get better.
Nope. Things didn't go as planned...
My body doesn't respond to the prednisone, which is the gold standard for treating this in the short term. A full month later, (I've gotten my Humira and done my first loading dose) I've been in and out of the hospital, getting potassium and iron infusions, and many bags of fluids. They even try a 3 day dose of an IV steroid to try and kick-start things, and while that helped a bit and got me stabilized enough to send me home (with another month long prescription of prednisone at 40 mg) even that didn't put a dent in my inflammation levels or symptoms. Now, I've been dealing with minor side effects from the prednisone, but by this time, I start to develop major ones. Uncontrollable shakes, dry cough, heart palpitations shortness of breath and fevers. I finally went back to my GI doc yesterday, and she agreed to do a fast taper to get me off it. Plan b...mesalamine enemas, a antibody test to see if I'm developing a resistance to the Humira, even though I've only been on it a month, and a sigmoidocopy scheduled in 2 weeks to look for any other viral nasties like cytomegalo virus that might be holding my recovery up.
I hope I tolerate the enemas ok, and that they do what the prednisone couldn't. I'm just a few treatment options from losing my colon, and I'm afraid. My first one is tonight, so we'll see.
I'm blessed with having the new job. My leave of absence has been extended to June, and my employer is paying for my part of my insurance so I can focus on getting well. How cool is that?
I hope you don't have as rough a journey as I've had, and much respect to you for your situation. My kids are all grown. Keep us posted?Oh I hope you feel better soon and that the enemas bring you relief. Are you on any diet to help? If biologics don't work, ask your doctor to try a JAK Inhibitor. It is another class of drug for UC. That is an option for you. -Elizabeth (team member)
I'm going through my first UC flare, as well, Babe Ruth. I was diagnosed in February with a colonoscopy and biopsy. My Dr got me the referral for it fairly quickly, but still took a few weeks to schedule.
My aha moment was when I exploded with massive diarrhea and much bleeding. I have to say that my care team has been very helpful and attentive. I have access to my GI Dr whenever I need to update them on the progress of my treatment. Which, at the moment has been a massive challenge.
They put me on 40 MG of prednisone with a taper after 2 weeks to begin with so my insurance could go through the process of approving Humira. Prednisone did nothing to help control my symptoms, and I ended up in the hospital several times to get fluids and potassium and iron infusions. The last time I was admitted, they put me on an IV steriod to Kickstart things, then sent me home with another month long prescription of 40 MG pf prednisone. I hate the stuff because it's not working. Despite some relief of symptoms like bleeding and frequency, I'm still dealing with fevers and all the side effects of being on prednisone, like the shakes, cough, and blood sugar crashes. It's just not reducing the inflammation like it should, so I see the Dr today to discuss plan b. Whatever that's going to look like.
I've been completely out of work since then.
I can't imagine doing what you are doing and staying sane, lol. Respect to you.I really hope you start to feel better soon and that you can get started with the Humira. Prednisone is a hard drug. I'm currently on it as well as I wait to start Skyrizi. Do you have support from family and/or friends as you go through this? Don't be afraid to ask for help. Sending strength your way, Elizabeth (team member)
