Newly Diagnosed and severely overwhelmed

What meds are you taking?

We’ve been there!!! You are not crazy. This illness is a devastating one. I remember looking at my “normal” life before I was diagnosed and wanting it back so badly and yet knowing it was gone forever and my new world would be one of pain, weakness, running to bathroom and “accidents” and not being able to eat what I wanted.

The good news is I was wrong about that. It took a year but I did find my way back to a somewhat normal life and have been in remission for 4 years on Entyvio

If you read on diets and foods here you’ll find most people saying that food and diet don’t cause or cure this disease but it can affect some symptoms. I tried all the diets without much luck but did learn that certain food — mainly foods with fiber or gas-producing , in my case— would irritate my already inflamed gut and give me more pain and blood. I tried to limit sugar especially as that seems bad for me. As your gut calms you may be able to reintroduce some foods and see how you do. Everyone is different and unfortunately there is no tried and true diet or evidence.

As far as dairy free smoothies you can try kefir or yogurt as a base. There are a few brands of commercial yogurt that are made with almond milk but be aware they also have lots of sugar. You could use almond or oat milk but I would use the unsweetened ones. Some people recommend sunflower seed butter instead of peanut butter One of my comfort foods was saltine crackers (or they have some almond/nut flour based crackers) smeared with nut butter as a snack as I was so weakened I was craving protein. My other comfort food was eggs. Some diets say no to eggs but that was my main go-to. I also made turkey meatballs and froze them so I could throw a few in the microwave for snacks.

It is overwhelming but there is hope. If things get too bad please see your doctor. I eventually went on antidepressants for a while to help break free from my depression after my dr explained to me that their is a mind-gut connection and this disease affects the process.

This forum is great for advice and letting you know there is hope. Keep us informed!

Welcome to the forum.

What is the extent location of your UC?
What exactly are your symptoms?

It takes time to learn how to deal and live with UC.
I suggest you take in enough protein such as eggs and meat.

Rectal meds should be a must addition to to your regimen...no matter the extent.

q

When you go back to your GI be sure to ask for a copy of your biopsies plus copies of the visual results of your colonoscopy (I’m assuming you had one?). You can post your biopsy results here as some members (not me! 😀) can interpret them for you. These reports are vital to keep in your files.

Bananas were my go to snack when I was really sick. Did your docs advise you to go on that diet regimen or did Dr. Google? Diet is very individual. There are some who do well on restrictive diets. For others food has little affect on UC. Prednisone can really mess with our emotions and make us extremely hungry. Most people gain weight when they are on it because they eat too much. Maybe you could slowly add some other foods so you stop losing weight and don't feel so deprived.

So sorry that you have joined this sucky club, but I promise you ... you won't always feel this way.

I had trouble with water intake because even a small sip of water would send me running for the toilet — not the water itself of course but anything by mouth stimulated my digestive process which stimulated the bowel. So as a result I was hesitant to eat or drink anything. So …. Don’t do what I did!!! 😀

Sorry to hear you got UC. I remember how overwhelming and scary it was when I first got sick 14 years ago. Hopefully the meds are already starting to help and the mesalamine will keep you feeling fine. If not, there are other medication options you can try, including adding in rectal meds, like mesalamine enemas (not as bad as they sound and they can really help).

I personally eat whatever I want with UC. If you are hungry, eat. Especially on prednisone for 2 weeks, I don't understand the point of limiting your diet so much. Regarding your question about dairy-free smoothies, I've been vegan for over 9 years and I I use almond or soy milk or juice in my smoothies. I just do frozen fruit (frozen mangoes and soymilk is really, really good!) and a plant-based milk or fruit juice. There are also vegan yogurts. The Silk brand is really good. Some brands are kinda gross.

It gets better.

Oh and ARIEL_44, how do you explain anything to teenage boys, sigh! Just kidding! My son was 2 years old when I was diagnosed with UC so he's lived with it for most of his life, but he still doesn't get it sometimes.

I'm generalising here but teenagers tend to be pretty self-absorbed and inwardly focussed, so try to forgive them if they don't understand.

I find that when a family member who doesn't really understand UC moans about having a stomach bug for 24 hours it's a good opportunity to get through to them by saying, that's a bit like what UC is like, but UC is much worse, and a flare up usually lasts for months. Ie it's a sort of 'welcome to my world' opportunity. The look of horror on their faces usually says it all!

Hello Ariel 44

Sorry you're going through this. It is a terrible disease and has certainly created challenges for me over the last 40 years. I have been in an acute flare up for months and just started a biologic (Humira), which is definitely helping, though I had a set back yesterday.

My go to breakfast is stewed apples with coconut milk yoghurt. It was recommended by a top nutritionist in Harley Street and it really helps me. It has a little fibre but I peel the skin off. It has an anti inflammatory effect and is soothing for my gut. Very easy to digest and delicious with the yoghurt made from coconut milk. Both have probiotic content. I just peel 4 brambly apples, cut them up and stew them on the hob with cinnamon and spring water for 5 to 10 minutes until they are soft. Google stewed apples and gut health. You might want to give it a go.

Good luck

Cx