Ulcerative Colitis? Crohns? Others?

Hypsibius

Hey everyone!

So last week I was hit with a 4-day hospital stay after some brutal symptoms and discovered through the process that I have ulcerative colitis... it's not SUPER common but enough that I wondered if there were others here navigating complex diets to help alleviate and prevent issues with these kind of stomach disorders.

Anyone else? Any strategies you use for keeping a careful diet or tracking how different foods affect you?

Thanks cheers all

kelsiestoner

I've found out quite recently that the stomach problems I've been dealing with for months may be the result of gluten intolerance/celiac disease. Following to see if anyone has any advice!

glassyo

I have UC but, to tell you the truth, I just take my drugs and still eat whatever the hell I want (mostly at night) and try to stay away from people the next morning. I've been pretty lucky tho. I don't think I've ever gone into a full on flare since starting the drugs.

rhtexasgal

I have UC as well BUT it has been in remission for several years. I got some good drugs, got into remission, and then a few years later decided to lose weight and found myself here. I will say that once I figured out a good diet, I stuck with the basics and have continued to do so, even in remission because that is a kind of hell I don't want to revisit!

I credit probiotics and fermented foods with getting me back on track. Sure, the drugs helped but the diet truly made the difference. That is also when I discovered coconut oil for healing my GERD and the ulcer I also had! As I healed, my gut gurgled a lot and still had cramping and gas. Charcoal tablets helped as well as digestive enzymes. Once I was feeling really good, I dropped the charcoal and enzymes but kept the probiotics and fermented foods.

rhtexasgal

Oh, if you have not had bloodwork to measure all your nutrients, make sure you get it done. With UC, it is harder for the gut to absorb nutrients and you will likely have to supplement, two common ones are folate (not folic acid) and vitamin D3 ... these are the two main ones I had to supplement.

CoachJen71

I have UC, though it's gotten better after kids and going through the change. More like IBS now. I have never been great at cutting out foods due to UC or GERD. Usually just down otc meds to deal with symptoms. (I am sure if I had a healthier emotional relationship with food, I would adjust my diet instead. Still making that journey.)

lporter229

I have Crohn's disease. For me, it was all about getting on the right drug. I could try and control things with my diet, but it only really helped at easing the symptoms a bit. Unfortunately, IBDs are not known to be well controlled by diet alone. I do however, still eat a gluten free diet. That has really helped lessen the joint pain that is a side effect of the Crohn's. If I eat much gluten at all, I get really stiff pains in all of my joints, even though my Crohn's is basically in remission thanks to Remicade.

kmshover

I deal with diverticulitis a lot. Recent flare up just this week. Have been hospitalized for it and it is horrible. Can't imagine dealing with UC or Chrones. For me it is about eating a high fiber diet and steering clear or corn (my biggest trigger). I have thought about seeing a dietician or nutritionist but pretty sure my insurance doesn't cover that. Have been asked several times if I have celiac disease as they go hand In hand. But never been tested.

bossymom15

I don't, but my 18 year old son does have UC. Everything thing you read and talk to tells you something different about the diet. I think a lot is trial and error and good drugs!! He just went through a horrible flare, his first in 3 years treatment on Remicade. We definitely eliminate High Fructose Corn Syrup, foods with high fiber or seeds, and honestly eat as free from preservatives as you can in this day in age. Stress is his biggest cause of aggravation. I hope you are able to find a good strategy for you.

singingflutelady

I have Crohn's though I recently had a total proctocolectomy with end ileostomy (had my colon rectum and *kitten* removed) because of fistulas. Before surgery I ate a modified low fodmaps diet but after surgery I could eat almost anything. Unfortunately I am still med free as you have to stop biologics pre op and I still have an open wound (surgery was 6 months ago) and from an MRE it appears that my Crohn's is back in the gastroduodenal area (I hope not as I have never had Crohn's in my small intestine before). I'm having a scope to see for sure next week. My Crohn's is fairly aggressive though (diagnosed Jan 2015 deathly ill on TPN in hospital for over a month, developed fistulas the next month and had everything below my ileum removed a little over 2 years post diagnosis mind you I had symptoms forever)

singingflutelady

lporter229 wrote: »

I have Crohn's disease. For me, it was all about getting on the right drug. I could try and control things with my diet, but it only really helped at easing the symptoms a bit. Unfortunately, IBDs are not known to be well controlled by diet alone. I do however, still eat a gluten free diet. That has really helped lessen the joint pain that is a side effect of the Crohn's. If I eat much gluten at all, I get really stiff pains in all of my joints, even though my Crohn's is basically in remission thanks to Remicade.

Remicade saved my life but didn't heal my fistulas. The last little while I thought it wasn't working but I guess it was as I had to stop it end of February before surgery and even after having all my diseased parts taken out it appears crohn's is back

aconlan2010

I have UC and have found that eating a more “natural” diet (fresh fruits and veggies, lean meats) have helped but I do take meds that help tremendously as well. I don’t eat beef at all as that seems to be a personal trigger for a nasty flare up.

lporter229

singingflutelady wrote: »

lporter229 wrote: »

I have Crohn's disease. For me, it was all about getting on the right drug. I could try and control things with my diet, but it only really helped at easing the symptoms a bit. Unfortunately, IBDs are not known to be well controlled by diet alone. I do however, still eat a gluten free diet. That has really helped lessen the joint pain that is a side effect of the Crohn's. If I eat much gluten at all, I get really stiff pains in all of my joints, even though my Crohn's is basically in remission thanks to Remicade.

Remicade saved my life but didn't heal my fistulas. The last little while I thought it wasn't working but I guess it was as I had to stop it end of February before surgery and even after having all my diseased parts taken out it appears crohn's is back

Remicade did not work on my fistulas either. I have had two surgeries for those, but thankfully I am doing well at the moment. I am so sorry to hear that you are still struggling. I hope you are able to get things worked out. IBDs are such nasty diseases.

lporter229

aconlan2010 wrote: »

I have UC and have found that eating a more “natural” diet (fresh fruits and veggies, lean meats) have helped but I do take meds that help tremendously as well. I don’t eat beef at all as that seems to be a personal trigger for a nasty flare up.

I also feel that eating as "natural" as possible has helped me too. My doctor has told me that even though I am currently in remission, my colon is and always will be, extremely narrowed from all of the scar tissue built up. I think that anything that causes excessive bloating is going to cause us extra discomfort. Just my thoughts on it.

rhtexasgal

I stopped taking my maintenance meds a few years ago and had been doing fine with just diet and exercise. However, in the past year, I have noticed that my body retains a LOT of inflammation, especially after weight training. I believe my perimenopause is a factor in that. So, I did what I did NOT want to do ... start taking my UC maintenance meds again. Luckily, I can get away with this old school drug called Sulfasalazine which is also prescribed for rheumatoid arthritis, yet another inflammatory condition. The good news is that within two weeks, my inflammation is greatly reduced. However, I hate having to take it again.

On a side note, please take proton inhibitors like Prilosec sparingly if possible. I had to find out the hard way from my orthopedic surgeon that it leaches away nutrients from the bones. I shattered my kneecap a few years back (banana peel slip in the driveway and me trying to catch myself pulled everything taut in my knee, snapping my kneecap which it should not have been able to do) ... I told my GI doc and he was clueless!

sheri6567

I’ve had UC for 12 years, on asacol for the past 4. I recommend keeping a food diary to record what your tummy hates. Greasy foods, some raw veggies, nuts with skin, seeds, heavy dairy, MSG and wheat seem to be my enemy. Doesn’t mean I don’t cheat once in a while though, and pay for it later

MelissaPhippsFeagins

kelsiestoner wrote: »

I've found out quite recently that the stomach problems I've been dealing with for months may be the result of gluten intolerance/celiac disease. Following to see if anyone has any advice!

Have the test for celiac. It's definitive and not as bad as advertised. After that if the test is positive never eat gluten on purpose again. That's easier now than it used to be. It's harder for me than a lot of celiacs because I have multiple other food allergies so that I can not use coconut or soy flours.

As for tracking, MFP is a God send. If I know what I ate and get sick then I know to never eat it again.

Vanorthea

Chronie here. I'm new to tracking my foods and hoping I can spot trends as well. I'm trying to lose weight, and getting frustrated because it seems the more healthier I eat, the worse my Crohn's disease becomes. On my second biologic and 6mp, too.

rlaurain

I have UC. I was diagnosed about 4 months ago. It is a living nightmare. I was at Urgent Care a couple days ago for an extraordinarily painful flare. I am on a steroid to calm the inflammation until I can get in to see the GI specialist. I am trying my best to see the doctor but they're all booked months in advance, so I've been suffering a lot. I need to see him ASAP to get on a daily medication. Diet hasn't helped me at all. I cut out bad foods and I continue to suffer awful stomach pain and nausea.

singingflutelady

I'm back in the hospital and yes it's crohn's in my stomach. I vomited everything I ate last weekend so I was admitted. Since it's rare they are unsure what treatment to give me.

CoachJen71

I am so sorry for the suffering that many of you are experiencing! *group hug*

capaul42

@singingflutelady I'm so sorry about the new issues you're dealing with. I hope they can find an effective treatment soon.

CarvedTones

Are any of you HLA-B27 positive and trying the low/no starch diet? Search for "HLA-B27 starch" and you will see a ton of info on it including hard science in pubmed papers; it's a legit thing. But going without bread, pasta, rice and potatoes will not be easy. I am giving it a try.

jefftamm773

Get the book by Dr Richard Becker! Foundations for Healing!

pjowkar

I suffer from "mild" Crohn's. Feel free to add me!

Hamsibian

@singingflutelady how are you feeling? Are you home yet?

michael1976_ca

my mom has crohn's I've seen how bad it can get. she has 6 feet of intestine left. she has a bag hanging off her right side stomach. I hope I never meet anyone else who's been through this much pain. because this sucks

singingflutelady

Hamsibian wrote: »

@singingflutelady how are you feeling? Are you home yet?

I'm feeling a bit better. I'm still in the hospital. Today it has been 3 weeks grr. I hope to get out veey soon

singingflutelady

michael1976_ca wrote: »

my mom has crohn's I've seen how bad it can get. she has 6 feet of intestine left. she has a bag hanging off her right side stomach. I hope I never meet anyone else who's been through this much pain. because this sucks

I have an ileostomy too. It's bettsr than the alternative.

bellaesprita000

I have IBS-C. I've gotten in under control over the last couple days. A daily dose of Miralax works wonders.

SpiritGirl94

Me too! It sucks.