NEED A GOOD TALKING TO

Sassy,

What I did.... (I too was starving and wanted to eat everything and anything when my Remicade kicked in. My GI and CRS were pretty adamant about my sticking to my bland diet and slowly adding things back in. 1 item every 4 days. No junk food/processed food.) I started a new food journal with a list of my "safe foods" and then a wish list.. I added back in 1 item every 4 days and wrote down how I felt every day. It helped me judge which foods my body was ready for. If I got nauseous , tired, constipated, or had diarrhea... It went to the bottom of the wish list and I'd try it again at a later date.

Frustrating... Yes. It drove me crazy. It was 2 steps forward and then 3 back sometimes.. But the food journal helped me transition. I did not eat premade or processed foods. For me... They caused diarrhea or horrible constipation. (There's only so much Milk of Magnesia I am willing to take in a day....)

I am not saying food does that to/for everyone... But that's the way it was with me. I started Remicade in 2014. There are things that I still can not eat.... But... By incorporating only 1 food in ever 4 to 8 days... It helped me know what I could eat safely. And when I tried it I ate just a little, then a little more the next time... I gradually increased the amount.... Just to make sure.

I did cheat though... I did try fast food occasionally. Lots of milk of magnesia or Zofran when I did that if they didn't agree with me. To this day I can only eat Chick Fila, In n Out Burger, and KFC... And only certain things on their menu.

You want to get your body used to eating again, and avoid obstructions. I had an inflammation obstruction (caused by inflammation not scar tissue) the first time and it was uncomfortable. Afterwards I developed more scar tissue and inflammation obstructions and ended up with a colostomy. But I'm that rare case.

If I were you, I'd switch over to clear liquids, drink lots of purple grape juice(unless there's blood), apple juice, clear jellos and broths. Take some MOM.(milk of magnesia).. And see if you become unclogged. Stay away from rice, bananas, potatoes, marshmallows, bread... Anything that will bind you up. You want a low residue diet right now. No salads, raw fruit...

I hope you feel better soon.

Clo

(Reeses were my greatest temptation. It took a long time before I could eat candy bars again.)

Let me know if you have any questions.

Post Edited (clo2014) : 1/18/2024 6:51:13 PM (GMT-8)

Clo,
Lol, no, 2 chocolate bars ( 3 cups ) in each bar. Funny about the foods mentioned..I was eatingbananas, bread, bagels, peanut butter, and started raw vegetables in salads. Too soon I guess. I even ate a little steak. I am anemic.
After today's infusion I will pickup some items to try and get (going) again.

Thanks Clo, I needed that reminder.

Sassy...what have your bms been like over the past 2 weeks?

q

Hello,

Yesterday's infusion went well. I get high BP evert time I step foot in the clinic. But before and after, back at home, my BP is normal. ( white coat syndrome). Lol

Q- 2 weeks ago i had 1 semi-formed bm a day. I felt great. Went to the gym and started yoga. Then got so hungry I started eating way more than usual, chocolate and cookies etc. Pecans and pistachios may not have helped. Starting 7 days ago I was constipated and after a few days of no movements, the mucus with blood began. I only passed a little bm the other day.

I wish I had my own dietitian who would cook for me! Someone who supplies the food, and puts alarms on the cupboards and fridge..and all my hiding spots, stopping me from indulging! Lol 😆

But seriously, food prices are soooo high now. Gluten free products are too. Meat is packed full of antibiotics, probiotics are very expensive and medication is off the charts. All of these factors have played a role in my control of this disease.

Chiming in to say entyvio took me four months to get to symptomatic remission (I.e. feeling good and no more accidents) but another few months to get to clinical remission (clean colonoscopy). But I had days early on where I felt stronger — I can’t explain it other than that. Just know when I started entyvio I was very weakened by malnutrition and weighed under 100 pounds, so feeling strong was really a big deal.

I’m equating your feeling hungry as a positive sign, because I recall at that time never feeling hungry. It’s hard to find patience with this disease. I remember once having two bites of chocolate and then having blood show up. My dr didn’t really believe me but … well we all know that drs don’t know everything about this disease and we live it daily.

Anyway, once you reach remission you might be able to eat as normally as you did before UC. It happened for me anyway. Till then try to be patient and yes clo had good advice about introducing new foods slowly.

Thank you for all your encouragement and advice.

Yesterday was an extremely bad day for me. More blood and mucus and passing only tiny amounts of bm. Bottom exit was Inflamed to the max. I spent a large part of the day in bed. Resting helps the urge to go away.

Today is better so far. I tried not to believe food and coffee made no difference in my symptoms, that a lot of others have mentioned. However I was in denial. The last few years and months have proven me wrong.
My Dr. told me to stick to what food I can tolerate and cut out coffee. ( that lasted a few days ) its up to me to find out what to eat, drink and what and when to take medications and supplements. My Dr. Has no office and the only time to see him is for colonoscopies . Back when in- person visits were a thing, it was so much easier to talk and show where the pain is etc. Don't get me wrong, he is a very good GI. There is a real shortage of GI specialists where we live, and mine has patients all over the Lower Mainland.

Today starts a new week and I will look for a diet plan I can afford and manage. It's time to take control, stop feeling sorry for myself, accept my disease status, and forget about the ice cream in the freezer etc. I don't even really know if I'm lactose intolerant, but I stay away from dairy.

There..I gave myself a Talking to!

Sassy

This is MY perspective based on my experience and what I read on HW over the past 21 years.

What's disturbing to me, re the site link, is the term diet triggering IBD symptoms. There can be extreme confusion and much misunderstanding about the term and separation of food and symptoms. I'm NOT saying this to create any huge discussion on the glossed term, I’m suggesting people be mindful of 'food intake and symptoms' VS 'food intake symptoms while flaring' or 'food intake symptoms while not flaring'.
Yes, I do not believe food intake causes flares or makes them worse (in the flare sense)...but I do believe that food action in the gastro tract serves a purpose to increase motility, soften stool, slow down motility, bulk stool...as do foods cause more gas, cramping and increase an inflamed flaring gut to expel foods faster that it does not like. Any of those symptoms could be easily summed up as it makes IBD symptoms worse, but food intake and timing could be used to lessen or help unwanted and discomforting symptoms.
When it's better understood subjectively, it doesn't become a perceived mental failure or emotional punishment leading one to trying extreme and limiting diets that could possibly have dire consequences.

Again...just my perspective and food for thought, so to say.
q

I agree with quincy! When I'm flaring, I know there are some foods that I can't "tolerate", meaning, they will make me feel worse (mostly those with high insoluble fibre content), and there are some foods that I know are "safe", and then there are a bunch of foods in between where I can't work it out. The thing is, when a drug work is working, you don't have to worry too much about what you eat. I mean you can remove obvious triggers for symptoms while flaring, but worrying because you ate a cookie or a pecan nut... that is not going to affect the course of your UC.

Thanks. I am in the "INBETWEEN" stage, not always knowing some food types, or how much is too much, before it's too late. Until a couple years ago, I flared only a few times in 20 years. A "white" food diet got me out of a flare within a week. Sometimes rectal enemas helped. But those days I consumed anything I craved without consequences.

I now know Spaghetti sauce, any hot spices, dairy, sugar filled goodies do affect me. One of the problems is cooking for two. My menu and my hubbys menu. Very different! But, this is the new norm for me and I will adjust.

Sassy

Clo,
Lately I have made soup and frozen it in small containers. My hubby does not like soup anyway. I cook up lots of chicken breasts and freeze some, then cut them up for lunches for both of us. I eat a lot of canned salmon...maybe too much? And boiled eggs. I'm stuck on broccoli (love it), carrots and mashed potatoes. I've never experimented with legumes, or eggplant. I love beans, but they pose a gas issue. Of course he does not like them either. I have fond memories of chili..minus the actual chili ( too spicy ). We have yet to buy a BBQ for our new condo..when we do...he can cook to his hearts desire. I'm hoping to get to a point where I can have some steak, pork and grilled chicken ( no BBQ sauce ). Things will get better in the warmer months for sure.

I have started a food diary many times, but started cheating on myself..lol that eventually led to over indulging on everything, only now, I'm finding it hard to get back to any kind of remission.

Food is my crutch... since childhood. I was over weight, had anorexia and bolemia that probably contributed to this onset of UC.

I'm glad you can relate to these issues, it helps me to get out and help myself. Today, a other food diary shall be drafted!

Sassy