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Newly Diagnosed UC...don't know where to go from here.

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Posted 1/23/2011 4:08 AM (GMT 0)
Hello all,

I am a 33 year old mother of two (wife of one), who was just diagnosed on the 19th of January after a colonoscopy and EGD.

I had been experiencing rectal bleeding, bloating, cramps and pain since April of 2010. I was in RN school at the time, I kept putting it off until I got out of school...then about a month after I got out of RN school, I had a reaction to Cardizem and wound up with Stevens-Johnson Syndrome. I was placed in a burn unit for 14 days. about 2 weeks after I was released from the hosptial, my father, who'd fought with Lou Gehrig's Disease for 27 months, died unexpectedly, at home while I bagged him.

Three weeks after my father passed away, I was laid off from my place of employment (with about 200 other new grad nurses). I was left with no insurance, no job, and stressed beyond anything imaginable. It was in the fall that I noticed that the rectal bleeding became worse, along with the bloating and pain. shakehead

I had a really bad time of it in December and decided that since I now was working, with insurance, I would get everything that is wrong with me fixed....starting with the rectal bleeding. I'd seen a commercial on TV about UC and began doing research and figured that this was what I had. My husband kept telling me that I just had hemorroids, but I knew better.

The doc put me on the Rowasa enema's until I see her again in March.

I think I need to change my diet and maybe add some supplements, so that is why I am here.

 

Posted 1/23/2011 5:18 AM (GMT 0)
Hi and welcome!

Rosawa enemas can be very helpful. I hope they help you! As for diet, maany people find it's helpful to stop dairy or decrease gluten but I didn't notice any of these things helping improve my UC. Some people find supplements helpful, none have ever helped me but I do find probiotics to be helpful.
Posted 1/23/2011 6:45 AM (GMT 0)
I find that caffeine, alcohol, carbonated drinks and sugar make it worse for me. Also, during a flare-up, I stay away from raw food and dairy, which can be hard to digest. I was gluten free for 12 weeks and showed no improvement.
Posted 1/23/2011 11:47 AM (GMT 0)
A bit lazy I know but I've copied and pasted this message I left for another thread as it seems relevant to your question as well....

You'll find loads of conflicting advice about diet because what works for some doesn't work for others.

The key phrase is 'trial and error'. Unfortunately, as there are no definitive rules, you have to find what's good for you. There are some general rules whilst in a flare-up (shown on this website), but I found dropping back to a bland diet then adding different foods began to highlight foods to avoid.

Also, keep a good food/UC diary - it's a great way to spot patterns emerging. I note down what I eat, when I eat, meds taken, severity of BMs, times of BMs, consistency etc. The more info the better.

As for food - here's what seems to work for me:

Porridge (made with water, sweetened with clear honey), bananas, pears (peeled), gluten/wheat free bread, butter made from olive oil, rice cakes, potatoes (peeled), roast chicken, carrots.

I avoid:

All dairy, red meat, products containing wheat/gluten, processed food, citrus fruits, wholegrain/wholemeal products

Food that definitely has a negative effect on me:

Mushrooms, peas, runner beans, all wholegrain/wholemeal products, broccoli, baked beans, tomatoes

As for supplements - I don't know. I've started taking multibionta probiotic multivitamins but so far I haven't noticed any change from them.

Hope that is of some use - do remember it's mainly trial and error to work out a good personal UC diet plan
Posted 1/23/2011 1:07 PM (GMT 0)
Sorry you have this awful UC, I know how hard it is. Take it one day at a time, try not to get stressed out(stress makes my symptoms worse), I know the stress part is hard but when I get worked up I tell myself is it worth it to start having more symptoms and to feel worse. This usually calms me down. Also, it is just trial and error, everyone is different, I know everyone is saying that but it is true. Milk is a big no no for me. Ice cream also, mostly dairy, starbucks, fast food is also a no no, I will eat it from time to time but the next day I will go to the bathroom more. Also, coffee and coke(anything with caffeine in it). This site is really helpful with lots of diet info and other alternatives. I haven't tried acupunture or fecal transplant  but I would look into that maybe. I hope the meds you are on now work. I've never done the rectal meds. Good luck.
Posted 1/23/2011 10:37 PM (GMT 0)
Thanks everyone.
I tried Pizza yesterday and it was unpleasant.
Today was so stressful...TG for klonopin! :-/
Posted 1/23/2011 10:57 PM (GMT 0)
Shannon, try Soy Pizza. We have a store here called Pizza Fusion that serves it, or your grocery store may sell one by "Amys"

Definitly recommend a food diary. First few years I had this lovely disease I figured out this does NOT well with me:

Sangria
Beer
most liquor
Insoluble fibers(no dried fruit, no apple peel, no cherries, etc..)
caffeine
Dairy, Cheese, Milk, Cream. light butter is okay
fried foods
foods high in sugar

Some people have success with strict diets, like SCD, Gluten Free, TCM(what I am doing), there are others I probably am missing

Also, I find meditation+ yoga help a lot

good luck. Hope you get better soon
Posted 1/24/2011 12:40 AM (GMT 0)
Hi Shannon,
I am also a newly diagnosed (still in the process actually) UC patient. I would love to be your buddy here, maybe we can help each other through some of this as we work our way through this journey that I guess we are just beginning here. I also have lots of questions. I was an medical assistant, and office manager for a neuro surgeon and an oncologist. I am now interviewing for a new job this week. This forum I am finding is wonderful, but I wish I felt more at home here. Maybe having a UC buddy share all of the pain frustration questions etc.... will help us both. Let me know. Good luck no matter what. I will post my story for you also. My user name is cmfiebke
My Name is Christine
Posted 1/24/2011 1:25 AM (GMT 0)
Hey Christine!
I know a girl on another forum that directed me to a J-Pouch forum...which just freaked me out. I know that is a possiblity, but still!!
I am on FB SCaskeyRN
Posted 1/24/2011 10:26 AM (GMT 0)
i agree with serpentskurt everything that affects them is the same for me.. I find if i just eat very boring food i am ok. Eg vegetables and fruit meat. not fatty food or junk food. Stay away from fried also.Good Luck.
Posted 1/24/2011 10:47 AM (GMT 0)
I was diagnosed with ulceralitvie colitis at 19 I'm now 50. I had my colon removed 12 years ago and then was diagnosed with gluten & dairy intolerance. Take it from me diet and stress is everything with this disease. Change your diet and minimize stress at all costs and you will improve. GOOD LUCK !!
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