THIS SITE HAS BEEN SOOOOOO HELPFUL ...

By givemeabreakfromthisplease

1 min read

Wow, thank you so much inflammatoryboweldisease.net - I have been on my own with this hell for so long now, just a few minutes on this site has been like a glass of fresh water after being lost in a desert.

Just a few posts tell me that there are many sufferers on this rollercoaster nightmare with me.

I've been trying to solve the mystery of my illness/condition by myself - been completely in the dark. Now I realize that my symptoms are NORMAL as far as stomach probs go. WHICH IS SUCH A RELIEF!

I really feel for everyone on this site and everyone who suffers like this - it is hell!

The beginning of my IBD symptoms

My symptoms began in 2010, after a traumatic experience. Didn’t link this then.

Really bad gut ache.

By 2014 symptoms would not give me a second of peace. I had a sick feeling even if I drank a mouthful of water, couldn’t do /eat anything without feeling sick, it would cause great tension in my whole body, not just stomach, particularly neck and head.

I had ringing in my ears so bad it sounded like I was inside an aviary with 1000 birds chirping and light flashing before my eyes.

IBD can sometimes be hard to diagnose

NO DIAGNOSIS.

Symptoms GREATLY improved with Slippery Elm Extract Powder, lots of it.

Skip to now and 3 months back suddenly got the runs every half hour- even several times a night, preceded by terrible gut ache. This has cleared up now (two months later) but now I think it has given me a hernia so now I can’t walk.

All doc (not hospital) tests show no abnormalities, except for a bit of blood in poo test. Slightly high levels.

Receving care is a challenge right now

Doc wants me to go to the hospital for an endoscopy. But there is no way I’m going near a hospital with this virus.

So feel like a wounded soldier cut off behind enemy lines!

Any reassurance, words from experience, etc. would be greatly appreciated.

Thank you.

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crystalharper Community Admin
Hi!! We're SO glad you found the site and community. IBD can be so isolating and it always helps to know you're not alone. I hear you about wanting to stay away from any high risk areas and don't blame you at all. We all need to do what we think is best for us. Have you expressed these concerns to your doctor? I wonder if he or she has any solutions to provide some relief to you in the meantime, until you feel safe enough to go to your appointment. I don't have any personal experience to share with you but I'm so glad you're here and I look forward to seeing you around the site! Kindly, Crystal (IBD team)
stacety67 Member
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1. thedancingcrohnie Moderator & Contributor
 This is so great to hear <inline-mention user-id="2284638" username="stacety67"/> . I'm so happy that you have found something that works for you. We are all so different, and react differently to treatment but that's why it's important to share. I hope you continue to feel well. Big hugs, Elizabeth (team member)
ejwithj-pouch Member
Hi GIVEMEABREAKFROMTHISPLEASE, A note of encouragement: you are not alone, though I totally understand how you come to feel this way because our disabilities are not immediately apparent/visible to onlookers, yet they are SO incapacitating, humiliating, exhausting!!! I am 15 years from diagnosis (took about a year and MANY medical appointments to get IBD diagnosis). You definitely need to feel safe as you seek medical help, but I would urge you not to wait too long. One thing that is helpful about our current situation is that telehealth/virtual appointments are possible. Obviously you can't have an endoscopy or colonoscopy virtually (gosh, wouldn't that be great - LOL) but you can try to get answers so you can begin to think about next steps. In addition to mainstream Western medicine (I am a proponent of using all expertise available, so I wouldn't want to ignore Western medicine), you may want to explore alternative medical therapies. For example, I now have as a part of my medical team a naturopath that specializes in GI problems. She can't prescribe medication or perform procedures, but she has been fantastic in helping me manage symptoms. I've also benefited from acupuncture, cranial sacral work, reflexology, chiropractic care...the list goes on and on. Many of us with GI dysfunction find diet to be really important. I have worked with 4 dietitians, each having a little something more to offer. Please continue to reach out!!! Eunice
1. RHall Community Admin
 Eunice thanks for sharing your experience! Lots of awesome, useful information here. I'm glad you included how long it took for you to receive a diagnosis (about a year). I have seen that many people considering if they have IBD but yet to have an official diagnosis aren't always clear *sometimes* diagnosis isn't cut and dry. Appreciate your thoughts on this and I think it will be helpful for many! Take care, Reggie (IBD-net Team Member)
Matt Nagin Moderator
Hi, Thanks for sharing. Gonna try the Slippery Elm Extract Powder. Have heard that mentioned but never given it a shot. Totally relate to not wanting to go to the hospital right now. My g.i. wanted to know why I wasn't visiting and the virus is why. Did do a telemedicine session though, which was better than I expected. Thanks for sharing. Be Well, Matt (Team Member)
Sahara Fleetwood-Beresford Moderator & Contributor
Hey <inline-mention user-id="2290450" username="givemeabreakfromthisplease"/> I am so glad you've found the site useful! I remember the huge relief myself when I found the online IBD community. Have you had a Calprotectin test, do you know? That is often a good indicator of IBD, and it checks for inflammation in the intestine. That said, it can be better at identifying it in the colon, so sometimes isn't that great at showing what's happening if the disease is active in your small intestine. Anyway, I understand your reluctance to go to the hospital, but I really do think you need to. They have lots of precautions in place to keep you safe, and getting yourself well is a priority. I am not telling you this to scare you in any way, just trying to highlight why I am concerned. IBD is very unpredictable and can progress rapidly. My personal experience was just two weeks of symptoms before being diagnosed, and in those two weeks it had got so bad, I had surgery within the week. It was so extensive that they couldn't risk giving any medications time to help because I was at risk of bowel rupture. This is why it's super important you get seen and your issues identified. You might continue to progress slowly, but there is no way if predicting it. It's always good to make sure they take some biopsies whilst they are in there, because sometimes the scope can look fine, but disease activity can be seen on a microscopic level. If you haven't had the calprotectin test yet then I would definitely recommend requesting one. - Sahara (team member)

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