Hi poppysocks, Yes I was dilated originally when they first diagnosed me and since then I’ve been taking tranilast. I tried some home dilatations but I think I made it worse, as I kind of felt...
I’m sorry this has happened to you Poppysocks. There’s nothing worse than making you feel like you don’t even have the rights to your own body anymore. Would it be possible for you to start a short...
Hi Poppysocks, I’m still taking it - I take two a day, one morning and night. Since taking it, I’ve noticed that I’ve had quite a bit of diarrhea but I’m not sure if it just coincided with me coming...
Hi James M, I have nerve impingement in both of my arms (radial tunnel syndrome). After months of nerve glides, physio etc they are sending me to have nerve conduction studies done. This will...
This happened to me too. I have had Crohn’s for 24 years and had never had a structure despite flaring regularly. Two years ago I went into remission and had never felt better, and then out of...
As you can see from my handle, I was also misdiagnosed. I was diagnosed with UC at the age of 13, fast forward to 37 after many many colonoscopies and I have just been diagnosed with Crohns instead....
I was never sicker than on the SCD diet unfortunately. I was a teenager and my mother put me on it but I found it so restrictive that I just couldn’t get the nutrients I needed, which just ran my...
Hi Poppysocks, That’s what I felt too, like why go through all the hassle of taking time off, having the dreaded prep, and then it needs to be done several times?? I would have just preferred a...
Thanks guys. I actually developed an abscess a few months after the stricture. I’ve had this disease over 20 years and never had an abscess before and my disease is fairly mild. I’m convinced the...
Scifigal, No I’m not. Like I said, my mucosa was completely normal up until the last 4cm, where there was inflammation and the stricture. I’d like to avoid biologics if possible as I’m the best I’ve...
Hi scifigal, Yes they actually switched my diagnosis to Crohns at my last scope after over 20 years as I had a deep ulcer and apparently that doesn’t happen with UC. I’m under the care of Prof Thomas...
Hi everyone, I found out I had an anal stricture about 6 months ago, after I went to go to the bathroom one morning and couldn’t. I underwent colonoscopy and had balloon dilatation. The rest of my...
Hi Stevo68, What antibiotics were you on if you don’t mind me asking? I just developed butt pain, which my doc thinks was an abscess (happened over Easter so GI was closed). So he’s started me on...
I can sadly confirm it’s media hype unfortunately. I’ve had both the antibiotic treatment and FMT and am not cured. My definition of a cure is that this dreaded disease is no longer present in...
Hi Betty Sue, I recently had a scope and they found that my previously moderate CD was now completely resolved, except a small 4cm patch. But I apparently have a rectal stricture, which they dilated....
Hi Jeff, Your symptoms are similar to mine so you might want to look into antiphospholipid syndrome. About 10 or so years ago I developed sudden onset of dizziness and right sided facial weakness...
There is something called a bispecific antibody and it is essentially two monoclonal antibodies joined together so it targets two different receptors. They have been used for a long time in cancer...
Hi little bear, The new shingles vaccine (called Shingrix) is much more effective than the old one (Zostavax), which was a live vaccine and therefore not suitable for immunocompromised patients....
Hi Canada Mark, I agree, although I don’t want to discourage anyone with my lack of success as my Dr said that it works wonders in some patients. I just wasn’t one of them unfortunately!...
Hi all, I tried this product approximately 2 years ago (in sachet form) and hoped that it would be a great addition for me. I manage with Mezavant as maintenance and add probiotics when flaring, but...
Probiotics have been commercially available for 20 years or so - I would say long term risks are well known. Most people think that there are no adverse effects with probiotics but there have been...
Probiotics have been a godsend for me. I am intolerant of imuran (uncontrollable vomiting to the point I have to be hospitalized) which rules out that class of drug and prednisone gives me the most...
My understanding was that Stelara has a more pronounced response than Xeljanz? I’m not super sold on the mechanism of action of Xeljanz and the other Janus Kinase inhibitors as their role in...
I would say increase the VSL#3, I wouldn’t think 1 is enough to do anything. I have about 10 per day when I’m flaring and only drop back to 1 a day to maintain remission. I know it’s a bit expensive...
I’m in a similar situation, a month in Greece and am in the middle of a mildish flare. For me, the only thing that seems to work is a panadeine forte (500mg paracetamol/30 mg codeine) tablet. It...
Hi iPoop, Will do - I’m currently experiencing a mild flare that I’m trying to get under control so now is as good a time as any. I am on day 2 and thankfully the kiwi fruit doesn’t seem to be...
Hi everyone, I recently came across an article that showed kiwi fruit is effective at replenishing the anti-inflammatory bacteria F. prausnitzii in the gut. As this bacteria is depleted in UC...
I have the exact same thing too!!!! I don’t use rectal meds but take mesalazine orally. I had always thought that it might be an overgrowth or harmful bacteria colonizing the toilet (since UCers have...
I know it does not just replace bacteria, but rather replaces the whole spectrum of organisms. But the autoimmune theory contends that IBD occurs as a result of an abnormal reaction to normal bowel...
If IBD was autoimmune in origin, ie an “aberrant reaction to the normal colonic flora” as per Daniel Podsky’s article that introduced that theory in the New England Journal of Medicine, patients...
Hi everyone, My dad’s brother has had PD for 5 or so years. His wife recently left him and he is having a tough time of it. I have been visiting him and chatting with him on the phone but I would...
Hi, I was doing some research on MS and found some interesting articles documenting resolution/reversal of MS with antiretroviral therapy. First I found some articles showing that a MS diagnosis is...
Hi Gretchen1, Thank you for your response. Like I said, after that initial spell, I had dizziness for months, every day, but fluctuated in severity throughout the day. It’s not vertigo, as apparently...
Hi everyone, I am a 35 y. o female who first developed neurological symptoms approximately 6 years ago. It started when I came home from work one day, had a shower, and was overcome with tiredness. I...
I found this one on eBay that is made out of brass, is hand held and has a hot and cold spray option. It’s also within budget. The only thing I don’t know is if it has different spray forces....
How fast could they arrange the FMT? I only ask because that gives you the best chance of response, i.e it would cure the c diff if you have it, but would also give you disease benefit if you don’t....
This is actually really common for people with digestive illnesses. The reason is that our gut bacteria produce substances that we then absorb and exhale in our breath. Obviously if our system is out...
If there was a medicine that reliably allowed me to achieve remission or even gave me quite a bit of relief when heading into a flare, I would take it. But since rectals don’t work for me (and even...
Chris, you sound like an absolute sweetheart. I think your attitude is spot on. When dating, I used to ‘test’ men to see whether they were a relaxed, non-judgmental kinda guy or uptight and fairly...
I used to have smoothies with whey in them and they seemed ok. But I know a lot of protein powders cause digestive upset in regular people so would be especially bad for us. Maybe google and see the...
It's rare for a parasite to get mistaken for UC because they are quite large and so easy to see on routine stool tests. The exception is Entamoeba histolytica that I know has been known to mimic IBD....
Paracetamol + codeine? Or not strong enough?...
Had ginger kombucha the other day, didn't do anything for my UC but tasted nice :)...
I think you need to reframe your thinking from the blanket "all medications are bad", all medications are different and some are fairly mild with a favorable side effect profile (mesalazine) compared...
I saw a study once that compared traditional culture for UTI versus a more sensitive test and all the people who had symptoms but negative test using the traditional technique actually had bladder...
I think people are giving him a hard time because his questions seem to come across as fairly self-centered and a bit uncaring. For example, scars are superficial and if you're in love with a person,...
Hi ILH, Similar to you, my long term relationship (11 years) came to an end a little over a year ago. Like your wife, it was me that left as I was desperately unhappy, stifled, and couldn't see a way...
I have hard boiled eggs every day for lunch, no dramas. Poached eggs have me running to the bathroom, but formed and no dramas. But I had an omelette a few months ago and it caused me diarrhea, wind...
There's a new shingles vaccine that has just been approved called Shingrix. It's a non-live vaccine so it's safe to take by us, even on prednisone etc. Perhaps look and see when the release date is...
I feel your pain Jessa!! I remember I once went out to dinner with friends and halfway through the meal the cold sweats started. I went to the bathroom and all there was was a single disabled toilet...