New to Healing Well, very recently diagnosed UCer! :)

Hello everyone! I'm sorry if introduction posts aren't normal, but I'd like to say hi.

I'm Sera, and I'm a recently diagnosed UCer, 22 years old. I've put all of my most up to date information in my signature, and I'm hoping that I can find some people on here with similar experiences. I've found the very swift worsening of my condition to be quite a shock, and struggling with some mood problems on the prednisolone at the moment. I've just arrived back home today after being in the hospital for almost 3 weeks, so everything still feels very strange!

Diet wise I've decided not to try anything drastic at the moment, and just eat nice simple and bland foods like noodles, rice, chicken, potatoes, bananas, etc. I dropped from my normal 8 stone 6lbs (55kg) to 6 stone 7lbs (42.6kg) during this flare, so trying to put some weight back on too and feeling quite weak!

Pleased to meet everyone, thanks for reading and I hope to make some friends here during my journey!

(I noticed that my signature doesn't seem to be working yet, so here's the info for now below)

Dx Mild Proctitis 2015. Pentasa Suppositories & Remission.
Hospitalised 2nd July 2016, 20cm flare. 40mg Pred 2 weeks, no effect.
Re-hospitalised 22nd July - 9th August. 5 days IV steroids & antibiotics no effect.
2nd flexi-sig & CT scan showed moderate pancolitis.
Started infliximab/remicade 3rd August.
CURRENTLY: 35mg tapering Pred, 1st Infliximab infusion, Salofalk and slowly improving!

Post Edited (Seraphae) : 8/9/2016 12:39:57 PM (GMT-6)

welcome,

sorry about your diagnosis, but glad that you will be getting the help you need.

your diet sounds good for flaring, and as you get better you will be able to add more foods in.
I found pureed soups were good for me because they didnt bother my gut but provided nutrients

there is a great group of people on here, so feel free to ask pretty much anything. obviously, check with your doc before making major changes

Make sure to read up on UC from good sources. I find mayoclinic and CCFA to have mostly good, clear and reliable information.

also remember that the info you see online is highly representative of the worse case. generally the healthy people are not posting online and looking for answers.

EDIT: I can see your signature now,
Your story actually sounds very similar to mine when I was initially diagnosed. You might want to look into adding something like imuran/6mp/methotrexate to the infliximab
not only do they help UC alone, there are many studies that show combination therapy is far more effective than either med alone.
they help prevent your body from making antibodies to the remicade

yes the increased risk of lymphoma is true. however, the risk is very very small and the risks of flaring or inflammation are a greater risk to your overall health and quality of life.
inflammation anywhere in the body increases cancer risks as well.

glad you got an initial response, always a good sign
(its good to keep in mind that many IBDers esp those who are flaring badly will need to increase dose and or frequency of remicade)

Welcome!

Hello I'm also new to this forum, I've been lurking for many months. Best wishes to you Sera :)

Welcome. Infliximab/remicade is the only uc medication to put my ulcerative colitis into remission. I hope it works well for you, as well.

Yes, lymphoma is the most concerning side effect that gives us all a moment of pause/concern when considering immunomodulators or biologics. I think it helps greatly to put that risk into perspective. The odds of the average healthy person on the street getting lymphoma are 2 in 10,000 (or 0.02 percent). The odds of a uc patient on immunomodulators (Imuran/6mp/azathioprine) getting lymphoma are 4 in 10,000 (or 0.04 percent). The odds of getting it while simultaneously on both biologics and immunomodulators is 6 in 10,000 (or 0.06 percent). Of those who get it, 66 percent are able to put it into remission. To put those odds into perspective, the odds of dying in a car crash in the usa are 1 in 133, and of heart complications are 1 in 5. So, we're talking really small odds.

The lymphoma risk was from the clinical trials where 2 adolescent males got it while on both remicade and imuran/6mp, and some gastroenterologists say don't be on both medications simultaneously if you fit within that demographic.

The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Just know that prednisolone/prednisone is the cause of of your weird moods and feelings. Pred is a temporary rescue medication that causes lots of temporary nuisance side effects. It's responsible for amplifying our tendencies toward depression, anxiety, and anger. We can have wild mood swings, happy one moment, angry the next, crying the next. Unfortunately, it's just part of the pred experience. So, don't blame yourself and be cognizant that it happens (to catch yourself if you can).

Hi everyone. Thanks again for your welcomes.

I'm having a pretty rough time of it when it comes to the pred right now. I'm in a really scary mental state where everything feels like a dream. I don't know if this is the 'brain fog' that people are talking about online. I'm very emotionally flat and it feels like I can't cry/be happy/feel much of anything. Even my food is tasting really bland and off now, and I've lost my ability to feel actually hungry for food even though I'm stuffing my face to put weight on and don't really feel 'full' either. Getting a little worried.

Hello there, nice to meet you.

We can get joint pains that get worse and better in tandem with our flare symptoms. The ccfa has some good info on it: www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

There's a rare side effect of infliximab/remicade involving joint pain, should it continue getting worse with your next infusion. Not sure if these pains predated that infusion or not.

Having a low weight or having recent weight loss doesn't impact joint pains. I lost 22 pounds during my worst flare, a fairly average amount for severe flares and all of my ribs vertebrae were visible. It stinks, but it goes with having uc. Once you heal you can regain lost weight in time, by eating everything you want without guilt (at least that's my philosophy hehe). I ate big, frequently and all of those awful things like deserts with great glee and no remorse over almost 6 months to regain my lost weight. Perhaps something to look forward to.

Prednisone tapering can cause joint pains (but unlikely at your dosage). Flares can come with temporary joint pains, and we are more prone to joint pains in general. The link from my other post goes through them in greater detail. Certainly tell your doctor.