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 ?!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 74 and been told by my parents that at 8 days old I was exhibiting signs of “ stomach” issues. Lived with on and off debilitating pains throughout my childhood on a regular bases. Being very athletic I ran track, fast pitch softball, etc. As I got to my teenage yeasts the symptoms got worse and more frequent and doctors brushed it off as being “high strung and an A type personality”. My parents feel for that and dismissed it. But I couldn’t… I was dying! Hospital visits and mind boggling pain became a permanent part of my life!
At 21, in college I was so sick that I went to the ER and refused to leave until something was figured out. After living in the hallway, sleeping on a chair, they started ordering test that narrowed down the fact that my intestines were full of diseased areas. I talked them into exploratory surgery.
From the long to the short, biopsies lead them to a Crohn’s diagnosis. In 1972 what the hell was that! In your comments you mentioned finding a GI doc and hoping that they run some testing.
You are your best advocate and unfortunately not much gets done in some occasions but you have to stand your ground and push back for what you need!
After 5 small bowel resections I am still having flareups, currently been in one since Thanksgiving and even with having been through this for74 years it’s still gets to me BOTH physically and mentally! Be a warrior and get the answers that you need to start your treatment. Stay strong and let your voice be heard!
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.
Thanks so much for sharing,
! Is this something that you've found helpful in reducing IBD symptoms? -- Warmly, Christine (Team Member) It has been a game changer for me. No more pain and very minimal swelling ( have to balance dose vs side effect- dry eyes and dry skin) and not having to worry about if a restroom is nearby when I go out is a beyond words
