Community Forum

After getting diagnosed in 2011 I had some bad times until learning more about my diet in 2013. For a long time I had my symptoms under my complete control. I even got so healthy I could tolerate small amounts of nonsoluble fiber. 

Unfortunately since February of this year I have been on a flare and just can't shake it. My usual tricks are not working. I kept a food diary for a couple months but eventually got disgusted and quit doing it. I need to start again. 

Today I woke up and had the day off. I packed my skiing equipment up last night so I would be ready to go. But when I went to the toilet I had another bloody bowel movement and it wreccked my day. I am down to eating like 5 things. White rice, bananas, tuna, melon, yogurt. So I just ended up wasting my day on the internet, drank a banana shake. 

Getting up to be active means working up a hunger. That means eating. And that means taking a bloody dump later on. So I guess I try to avoid my disease entirely by wasting a Friday off, being sedentary.

Does anyone have any good recipes or "flare breaker" tips? I am down to my last nerve. 

Reply posted for FreeBtooCold.

Hi FreeB.... I know exactly what u are feeling and going thru. I've been dealing with the devil crohns since 2004 and have tried it all-meds, diet, supplements, acupuncture...you name it and I didn't improve or suffer less. I too wanted to give up but finally said - this nasty illness won't run my life - it's taken literally too much of my time and years of no light at the end of the tunnel at all. 
You need to talk to people who also have crohns/colitis and keep in mind no two people have the same "version" of the disease. There are tons of clinical studies for our disease and from personal experience - they work!!!
your diet more than likely won't b the same two days in a row-some days even water will aggravate you. 
Message me anytime you want or email me if you just want to bitch about crohns or hear my journey.
dont give up!!!!

Reply posted for FreeBtooCold.

Ready to give up myself but its emotional verse my colitis/crohns. I was on pentasa and a bunch of those useless drugs. Failed miserably. I upgraded after a very bad flare up. After going on prednisone for over a year, I went through humira (Drug from HELL) and now on Remicade (slightly better) version of Humira. 

My two cents | You cannot go on without these drugs if they work for you. I recommend trying Remicade first and see how it goes. you need your GI doctor to recommend it. 

Formula for semi recovery (this is the best case i read or experienced)
Ask your doc to be on Prednisone for 3 months, and start remicade. Very dangerous drug, read all side effects but quality of life is 35% better than before. 

Reply posted for FreeBtooCold.

Ready to give up myself but its emotional verse my colitis/crohns. I was on pentasa and a bunch of those useless drugs. Failed miserably. I upgraded after a very bad flare up. After going on prednisone for over a year, I went through humira (Drug from HELL) and now on Remicade (slightly better) version of Humira. 

My two cents | You cannot go on without these drugs if they work for you. I recommend trying Remicade first and see how it goes. you need your GI doctor to recommend it. 

Formula for semi recovery (this is the best case i read or experienced)
Ask your doc to be on Prednisone for 3 months, and start remicade. Very dangerous drug, read all side effects but quality of life is 35% better than before. 

Reply posted for FreeBtooCold.

Ready to give up myself but its emotional verse my colitis/crohns. I was on pentasa and a bunch of those useless drugs. Failed miserably. I upgraded after a very bad flare up. After going on prednisone for over a year, I went through humira (Drug from HELL) and now on Remicade (slightly better) version of Humira. 

My two cents | You cannot go on without these drugs if they work for you. I recommend trying Remicade first and see how it goes. you need your GI doctor to recommend it. 

Formula for semi recovery (this is the best case i read or experienced)
Ask your doc to be on Prednisone for 3 months, and start remicade. Very dangerous drug, read all side effects but quality of life is 35% better than before. 

Reply posted for FreeBtooCold.

I am a denist , ex air force pilot and medical author. I researvh everything. This year Baylor med school looked at 2000 researchs on crohns and uc. They concluded that diet and meds cannot prevent flsre ups. They just hrlp manage minor symptoms. Gi specialists are a waste. Find a general physician who will work with you. I keep an rmetgency kit which includes budesonide 3mg and lomotil. I take the lomotil if i get that bad diarhea feeling. I tske 1 bud/day if get the glsre up unyil feel normal. If get refux take milk of msgnesia to get your poop gleing do your stomach can empty

Reply posted for FreeBtooCold.

I'm surprised you can handle bananas, yoghurt and tuna. Tuna gives me the sh*ts, yoghurt bloats me and bananas, oh my god, pain, pain, pain, wind, pain. Melons, well...nope.  I do not have UC like you, though but i have issues with loads of foods. I take it meat is out of the question? Plain chicken? or plain fish? like cod or something? Do you have issues with dairy? A lactofree yoghurt might be better, what about lactofree cheese? I literally survive on plain crisps or a few midget gems. I drink coffee to give me energy or take something sugary. Doctors wont listen, so frustrating...my doctor said i dont need fruit..but i can have vegetables either. All i do is crap. Today ive ran to the bathroom 3 times with diarrhea and pain and i only had a gluten free baguette last night that i half ate(got the fear, rightly so)

I havent been on many meds for diarrhea, i think one. I think id had one that was supposed to stop it, the name is audmonal forte. I dont really know how good it is as i tried it for a week a year or so ago but i may give it a go and let you know in a week or so

I see someone suggested a liquid diet. I was going to try something called HUEL. I was going to try the gluten free version as it only contained gluten free oats and loads of vitamins. It might be worth asking for some sort of prescription for a nutritious liquid diet for when things get really bad, after all, they must have meds in place for people in hospital who need this kind of help.

I know that things can be really tough, countless times ive felt like just giving up but i think you need to try your best to keep dealing with this. There may be options you havent tried yet that might alleviate some of your symptoms. I can only share this amount as i really dont know very much about your condition, sure someone else will give you some better answers.

I know all about sitting in. Im 27 and i have no friends, i dont drink alcohol anymore and i sit in the house a lot. When i go to work, im constantly paranoid my stomach is going to flare so i end up not eating then walking around like a zombie because of the lack of energy to function. It's a great life! You've got to keep pushing yourself and just remember, you are not alone. There are other people dealing with the same frustrations, the same issues, the same fears, concerns. Stomach issues are so common these days, i think a lot of the time its the sh*t they're putting on and in the foods!

Reply posted for FreeBtooCold.

Hello. I feel your pain. I am a dentist, usaf veteran pilot and have UC. I have researched this thing and vidited many physicians. What i sm telling you is not opinion. It is fact.
1 there is no prevention to UC. 
2 UC can be likened to a sin wave. Flare ups occur st yhe peeks. The frequency of those differs with fiffernt prople. 
3. Gi doctors are the worst. Only go to family phydicisns. If you dont like one go to another. You do not owe them your allegience.
i found a gp who suffered from uc. With his agreement he made an emergency kit for me. 
The kit contains lomotil for minor diarhea, budesonide for flare ups. Take one 3mg a day until you feel normal. I take candidase (walmart.com) everyday to kerp my guts ftom bloating. UC sufferers like carbs. Carbs grow csndidiasis.

Reply posted for FreeBtooCold.

Hey there!
I've been in your same position, it's extremely difficult and frustrating. I'm sorry :( 
Have you tried talking to your doctor about other options? For me when it got to that point, my doctor actually recommended that I do an all liquid diet of a dietary supplement called peptamin jr. It's kind of like an ensure shake except it has way more to it and is super easy for your gut to digest. I think some people just use it as a supplement in addition to eating, but I use it full time in replacement of eating. I also have a g-tube in my stomach which is how I get it, but I don't see why you couldn't just drink it if a g-tube isn't what you want. It really really helped with my symptoms of feeling yucky and having bloody stools after eating, yet it filled me up so I wasn't starving. For me it's temporary, this whole liquid diet, just till my Crohn's settles down to the point where eating normal foods won't bother me so much. I would definitely talk to your doctor and see what his/her thoughts are too, maybe there's something else that would work.