It was 2015 looking back at my photos. Yeah the lasting affect was I slowly got better from that point onwards. I was also on Remicade/Remsima started shortly after the shakes. But I was only on that for around 6months as I kept going in to anaphylaxis with it. Happened 3 times. The combination of the 2 in quick succession really helped me heal though and eating a good diet now has kept me that way. Will be 7 years now since I took any medication and over 5 since I’ve had any symptoms. I made lots of other changes as well but the shakes really stopped the downward spiral I was on and got me out of the being on steroids feeling better coming off steroids going in to a flare cycle.

How long ago was this?

Also did you have any lasting effects from being on a liquid diet for that length of time with your bowel pretty much not working for the entire time you were in the liquid diet?

Yeah they did, I was in hospital a lot at the time I was young mid twenties and didn’t want to go on a stoma. I had a great doctor, think he was one of the top guys in the country at the time and he gave it the ok. As expensive as the shakes are they were probably cheaper than me spending another month in hospital. I also tried all other meds but had life threatening side effects with a lot of them so it was a sort of last resort to get me of the steroids. The only drug that did actually work for me, for the 6months I was on it was remicade.

( UK chronie here )

Your specialist or IBD nurse should be able to request antibody screening - I believe before you start Humira. Mine was really struck about it and insisted on re-testing before putting me back on Humira (tried usteki for a while) incase I developed antibodies.

You know your health best & I’m not trying to suggest your specialist missed anything - just that it may be beneficial to request Antibody screening before beginning your next biologic or biosimilar (if you do end up switching).

Sometimes my docs miss one or two things for a couple weeks because we are complex, and the NHS is drowning right now (god bless it). Mentioning it myself guarantees a slightly better quality of care/them remembering - and they never seem offended by my asking.

Wishing you all the best + spoons.

I hit appeal - I’m sorry this happened to your post. I really appreciated reading the thread.

I just wanted to extend support after seeing you got mod-removed in the crohns forum, but mods removed my comment for not containing enough “?”, which I wasn’t aware was a rule?

I’m sorry this got removed for “not being rare enough”- but a car salesperson passes the subreddit rules? That seems like pretty clear bias in moderation?

Keep pushing (or, not pushing?)

Since I have to include a clear & direct question to avoid the power hungry mod : do you have a favorite flavour of ensure / fortisip / meal replacements ?

I’m also 12-ish years in with CD, Humira is helping but weight is the last thing I can’t get ahold of/control. I’ve tried most meal replacements and haven’t found any that are half decent yet.

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I'm starting my liquid diet tomorrow - feel free to reach out, much love

What’s the site? - I think growth is about either being consistent with content or having a neigh.

Drop the link so we can see what it is

I started it as a forum site and then it changes to something like a porno blog site. I don't plan anything.
i just post whenever I get time and feel like this should be on my website.

20, In this blogger domain, there is mostly explicit pornographic content

I guess people would be interested in knowing how did I get up there on blogger domain

How did you get started and how do you plan your content?

What is your age and what do you write about?

Why do you think anyone cares?

Unfortunately there are a lot of conditions that can affect your bowel, if you aren’t diagnosed with IBD then it could be a lot of other things. If an antihistamine helps you then could it be possible your condition is an intolerance or minor allergy? Those are things that get a lot of benefit from antihistamines. Have you been checked for celiac?

The NHS supported you doing this? It seems very far outside of their normal treatment plan for IBD.

Unfortunately since they don’t really know what causes Crohns, they also don’t know 100% how to treat it, so different treatments work for different people, there are a few that tend to be more effective for more people but you never know until you try them. Adalimumab (what is in Humira) worked for me but gave me some of the most unusual and severe side effects it can, like potentially a white matter lesion in my brain. The biologics are still relatively new and they don’t know the very long term effects of them and there are many different types within biologics, I am now getting put on vedolizomab (Entyvio), which works in a totally different way to adalimumab which is an anti TNF drug, the drugs work in different way and different areas of the body, adalimumab affects the whole body whereas vedolizomab only really affects the bowel. Since they don’t know what causes it, it takes time to find what type of medication works well for it.

So it is all very well people saying or recommending what drug worked for them or someone they know, but the disease is so varied that what worked for them might not work for you, any decent GI doctor knows of all these drugs, and should keep up with what new ones come out, and they probably have a much better idea of what is likely to work. It just takes trial and error and that does take a while.

Another slightly different perspective. I don’t stay positive or happy either but I tend to just become numb to it all, to the point where not much will affect me, just waiting for the next thing to go wrong. It probably isn’t too healthy a way to deal with it but after so much going wrong and cancelled plans and having to take time out of Uni, etc, it does seem like the easiest method. My IBD team have just decided to put me on a liquid diet though, so I will start that on Monday, it’s not something I want but it is just something I will have to get on with.

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How long it would take to use H3 as spaceships fuel?

Don't worry too much. Stomachs hurt regularly in healthy people too !

I totally understand the worry though, but the good thing about Crohn's is, if you're not sure you have it, one day you will be certain.

The disease is still reasonably rare only 1 in a 1000 people will have it so the odds are in your favour - just keep an eye out just in case !

Preventative measures are a good place to aim, but no one can agree on any hard and fast rules to prevent the disease occurring in the first place. The few we have are below:

. No nicotine or tobacco use.

. Regular exercise

. Limited processed food.

Please do some careful and diligent cross-checked googling to make sure I haven't missed anything out above and try to ignore the conspiracy big pharma peoples advice, they convinced me to go off my meds and I lost a year of my life !

I reallllllly appreciate your response! I have talked to his doctors about it (USA). He gets random stomach cramps and I cannot find a correlation of what could be causing it. It's maybe 4 times a year (he is 12, this started about 2 years ago and is less frequent every year). Doctor's did ultrasound and ran tests (thought he had appendicitis at first) said he was healthy. We eat very healthy, eats tons of veggies with his proteins. We cut out milk and cheese from his diet. He has never had soda or caffeine. Lots of water. Rarely ever has diarrhea. So I just automatically get freaked out anytime he gets stomach cramps. I will absolutely be bringing this up at his next appt. Thank you for your education on this. I never have stomach issues so I am not very knowledgeable, I've researched but talking with someone with personal experience is very appreciated! Sending you hugs and hoping you feel better soon!!

I was 17, but recently we've seen younger and younger people get diagnosed.

I think the symptoms are different depending on what age you are when the disease comes and how much damage the disease had done behind the scenes before its noticed.

If you're in a country with free healthcare I'd really reccomend scheduling a talk with your sons doctor to chat through it.

For me personally it began with dizziness, fatigue and extreme abdominal pain. I let it get really bad and then the rectal bleeding and hospital stays began - but I believe most can avoid that if they catch it in time.

I dont think Crohn's is guranteed to be passed genetically, I believe the science is still out on its cause being a mix of genetic and environmental factors - although studies do show if it's in your family you have a higher chance of developing it.

It started when I startrd smoking around 17 years old. But I was a pretty ill kid, asthma, eczma and stomach troubles.

The symptoms were extreme abdominal pain, dizziness and rectal bleeding. It then escelated to large bleeding and internal damage.