Struggling after colonoscopy results.
Hello forum, first-time poster here. I just got my colonoscopy results and I'm at a loss. I'm hoping to get some advice from others who have been on the frustrating journey of seeking a diagnosis.
I've been having gastrointestinal symptoms for 8 months. Blood and mucus in my stool, extremely painful bloating and gas, even seeing pieces of undigested food in the toilet.
I had 2 stool samples come back positive for blood/inflammation in March and April this year and in June I was diagnosed with anaemia and possible malabsorption.
I had a colonoscopy 3 weeks ago, they found inflammation and took biopsies. In the weeks following the colonoscopy, I have gone back into a bad flare-up - rushing to the bathroom multiple times a day, excruciating bloating and gas, mucus and food in my stool.
I got my results today from the receptionist at my GP - 'no clinical action needed.' Unfortunately, that's all she could tell me.
I feel I should be happy about this result but I hung up the phone and burst into tears, I've realised how desperate I was for some clarity or for a diagnosis that could give me an idea of how to manage these horrible symptoms that have been getting in the way of me living my life.
I'm trying to make an appointment with my doctor but it can sometimes be weeks before I can see my GP. So I came here in search of some advice for the next steps I can take, I feel certain that there is something wrong but I'm not sure where to turn.
I would appreciate any advice. Thank you so much for your time.
Oh, I'm so sorry to hear that you are back into a flare-up. Are you able to schedule an appointment with a gastrointestinal doctor? Or do you need a referral from your GP? If I were in your shoes, I would take action based on what your body is doing. "No clinical action needed"? Your body says differently. So, I would definitely want a GI to either look at your colonoscopy results or perform other/additional tests. After decades of living with UC, I know listening to my body is of the utmost importance. Please stay in touch and let us know what you decide to do. Wishing you the BEST of luck moving forward.--Traci (UC-IBD Team Member) Oh, wow!! I can't believe the mistake that happened to you by the receptionist! Wow. Wow. Thank goodness your GP called and clarified! I hope your biopsy results arrive sooner than 3 months. How frustrating! But on a good note, I'm glad to know your GP prescribed you medicine for your flare. Let me know how you do on Mebeverine. That medicine isn't available in the U.S. So, I'm curious to know how your colon responds to it. Also, is it in pill form? And how expensive is it? You've piqued my interest since I've never heard anyone mention Mebeverine until now. I'm always open to learning about new treatment options. Thanks for responding back about the mix-up in communication. I trust that everything happens for a reason. Hopefully, your wait leads to good results. I'm sending you positive vibes. Please stay in touch.--Traci (UC-IBD Team Member)
(BTW...Scotland is on my bucket list. I hope I make it there someday.)Hi
. It was quite a shock! Unfortunately, administration errors have been a common occurrence throughout my diagnosis journey so far. Thankfully I've been fortunate with my GP, she's patient and attentive. Yes, I'll let you know how Mebeverine works out, I've been prescribed 135mg in pill form. Keeping my fingers crossed for results sooner rather than later. I'd recommend Scotland in the summer! Lots of beautiful hikes and scenery in the north. Appreciate the positive vibes, thank you 😀
Do not be discouraged I experienced a similar issue in 1988. You need to find a new doctor, someone that is actually interested in helping you.
Please start tracking your intake
Diet is key here
I am 13 years free of medication and doctors for my crowns
I use turmeric and cbd anxiety to help on a daily basis
I'm so glad to hear you've been able to get some relief. It sounds like your diet change has really made a difference for you. Thanks so much for being a part of our community and sharing what's been helpful for you. -- Warmly, Christine (Team Member)
Ahh yes, that sudden revelation that you are the smartest person in the room... and you're at your doctor's office!
There should be many more tests to verify ibd. Blood to test C-rp levels and a few other inflammation markers. Also a stool calprotectin test. A Prometheus blood test is also advised. All of these are usually done before a scope exam unless you are due for a scope anyway. I have had numerous biopsies (one was just 2 months ago) and they have revised my UC dx to UC w/Crohns!!! I asked how they determined that and they said by the biopsies.
Scope prep can easily throw us into a flare. Then shoving a foot or two of flexable hardware up our delicate colon can't be good either.
Also call your insurance and ask if you can self refer to a GI Dr, many allow self refering for some specialties.
Best wishesHi
. Excellent point about the self referring or no referral required to see a specialist. My wife, Kelly, was diagnosed with a severe form of different autoimmune condition at age two and no referral for specialists is one of the first things we look for in choosing an insurance plan. It can make a huge difference. Best, Richard (Team Member)
