Some help please!

 

Hi everyone

I was diagnosed with uc in December last year and feel completely confused!  I had a colonoscopy to start with to diagnose - the doctor said this is what I have and put me on Claversal( anti inflammatory) and a steroid enema and also told me not to inlude any fibre/gluten or lactose in my diet.  6 weeks later I had much improved - was given another colonoscopy to check the improvement and then told to just continue taking the claversal and to continue with the exclusion diet.  I straight away seemed to have another flare up and when I finally met with my doctor she told me to start up with the steroid enema again.- and continue with the diet which has become unbearable!  I have never had any pain, lost any weight or felt ill throughout this, howver my stools are always soft and thin and I always seem to have some blood now.  I dont know if  I should be worried or not? I dont know if this is a flare up which needs to be dealt with? I have been on the steroid enemas for 2 weeks now with slight improvement though there is blood every other day - should I wait longer to see results?  My doctor said I could try introducing a few new foods and see what the effect is - but as I have blood most days I never know if its the food or not, in fact I am starting to think I cant eat anything other than fish/chicken , rice and potatos. Does this sound normal to you all? I dont know anyone else with this and my doctor tends not to want to talk about it - she just wants me to do what she says and not ask questions!  She has said though that if this doesnt work I may end up in hospital? Even though I feel fine? and that I will have to go onto the autoimmune drugs - which scares me. However I dont like the idea of steroids either as I hate putting on weight - its difficult not to when all I can eat is protein and carbs.  She has now given me iron tablets too as I asked for a vitamin test which showed my iron is very low - but said I dont need any other supplements.  At first I wanted to try to avoid drugs and use my diet to treat this - which seems unrealistic now, as I am thinking I need something stronger which might mean I can eat other foods (I am desperate for some fruit and vegetables). Physchologically I want to know if I am ill, I love sports but am not sure if I should be doing them?  Can I ever drink alcohol again?  Should I be worried (Which I am most days because I feel so clueless) I want to know if this is bad, or mild and so nothing to worry about? Could someone with some knowledge of this please give me some advice?

Hi, and welcome! Fruitgirl has some great suggestions, try new foods to see what you can tolerate and keep a food diary. Some of the foods that worked well for me when flaring was natural peanut butter, eggs, rice, yogurt, and oddly enough, chopped spinach with melted cheese on top. Now that I'm not in a flare stage, I enjoy wine with dinner, so I can tolerate that. Fried foods, lots of sugar, or rich and creamy foods don't sit well with me, but they never really have even before my dx of UC. Also, remember to educate yourself; we are our own best advocates. When you see your doctor, have a list of questions in front of you; that really helps. You are the doctor's customer; you are paying to see them! Take care, and again welcome!

Oh yes, I did forget to add that exercise is important for health as well mental well being. My favorite is walking, but I also lift weights, and when I was at my very worst, I got a trampoline and free weights and worked out at home where I could be close to the toilet (since exercise can stimulate the colon!) So, it is possible to continue your exercise; just look for different ways if you aren't able to maintain the higher impact exercise.

Ha, Peety! It was actually a bit easier on my gut than pounding the pavement. I just did light jogging and some jumping jacks...as tolerated of course! My friend gave me the trampoline and it was really a great form of exercise.

I was similar to you in the beginning stages of my UC in that I had no pain, no weight loss or feeling ill. I did have urgency and later bleeding.

Doctors I've seen (several) think stopping bleeding is most important and I would agree. That is the ulceration making itself known.
It took me many years to get that job done and mine was done with diet although I never had as good a doctor as you seem to have making that suggestion as well as treating with drugs.

Reading this forum it is clear that everyone has different reactions to different foods. I tried MANY diets over the years and just in the last 3 months found what makes my bleeding stop. But that may/may not be what helps yours. I know how frustrating it is.
My only suggestion is to try the SCDiet which you will probably hate because it will remove potatoes and grains also but removing gluten and starchy carbohydrates seems to be the answer for me (along with fruit and dairy).

Yes protein can be a boring diet but I'd rather not be bleeding and urgent and worried all the time. And after a week or so I found lots of recipes and legal food that are fun to eat. Takes work.

Just want to say I have failed again and again with food control but I also failed with meds helping too. UC sucks. Keep your chin up. Best wishes from someone who's been there.

Do I have less energy? No I have much more energy than before. Protein is a powerful energy source and with no D and loss of blood and fluids I get more sleep (no waking up to dash to the toilet) and am getting work done I just sat and thought about before.

I make greens juice by using a blender (too cheap right now to buy a juicer lol) putting fresh collards and other greens in along with water, blend, strain through a strainer and voila green juice. My great uncle who lived to 90's swore that drinking "pot likker" which is made by simmering greens in a pot was the secret to his health and long life. I also do stir fry with greens and chicken or shrimp, that adds some fiber in my diet.

I don't eat soy because the SCDiet advises not to. I've never had a gut issue with it, just following their protocol.

I don't have the idea that I will NEVER be able to eat "normal" food ever again. I'm just doing what I can one day at a time to try and get back to the very healthy person I was before UC hit. This disease makes no sense but I'm trying to beat it.

Good luck.