How do you calm down your symptoms?

[Deleted]

I can't. It is all about avoidance. You seem to have a lot of flare ups (I'm sorry I know they're awful) - are you sure you've isolated the foods that are bothering you?

It doesn't help much with the pain (only morphine does) but I do find it comforting to lay down with a heating pad on my belly when I'm hurting.

I'm not good at knowing when something is an emergency. Apparently I've had multiple bowel obstructions (which can be life threatening and send everyone else to the ER) and I just handled them at home... At least until one turned into a perforation and my bowel contents spilled into my abdominal cavity.

I knew to go to the ER for that when I had uncontrollable vomiting and pain much worse than id ever felt in my life. I wasn't in control of my own body and all I could whimper was "please help me." It was bad.

[Deleted]

I get you. Part of the reason I ignored my symptoms for so long was because they would eventually go away. I think that's the name of the game here. I definitely have my trigger foods (and will continue to add to that list for a while) but I don't think I have a certain food that gives me pain 100% of the time. Unfortunately if it sometimes gives me pain it has to go. I learned that the hard way :-(

I've had good luck starting from scratch (liquid diet) and reintroducing one food at a time. I can see what bothers me and what doesn't and it takes out a lot of the guesswork. I cut out alcohol, caffeine, prepared/frozen meals and fast food, dairy, and most fats, and I can't believe how much better my tummy feels on lean, home-cooked meals.

Other than Thursday night (which was bad - I was up all night in pain) I haven't had a flare up in the three weeks since my surgery.

Good luck at your GI appt. hopefully you get some answers!

[aimeedyan]

I, too, ignored my pain for the most part and when I finally consented to the surgery, I had a two tears and a mass in my abdomen which made for an awesome recovery.

I take Vicodin for the really really really bad pain. Downside is that it DOES make the pain more tolerable so that I can ride it out.

I've yet to walk into the ER with pain/obstruction. I've called the after hours number and talked to my GI to make him aware but have always done the doubled over/Vicodin/vomiting/heating pad dance at home until it passed. And... on several occasions, my GI admitted me the next morning and I stayed a week or so in the hospital.

And in the hospital, they give Dilaudid which is - IMO - the best.drug.ever.

Typically, when you start puking up stool you need to book it to the ER immediately. I've never reached that point, as my blockages are typically temporary in that once the problem food is expelled - or passes through the stricture - I immediately feel better. For me, the pattern is always the same. Few hours after eating problem food, I get the doubled over pain. Pain intensifies until I can't uncurl from the fetal position and barely breathe. I take Vicodin to take some of the edge off. This goes on for 4-6 hours and then I start puking. I puke another 4-6 hours and then I'm mostly back to normal, albeit exhausted and very sore. And this usually happens around a big event because my trigger is stress. Last bad one, I was leading an event at the convention center so once I could uncurl, I got dressed and headed that way. I puked in the car twice and then literally puked in every trashcan I passed in the convention center until it passed. Awful. Awful. Awful.

You DEFINITELY need a colonscopy, ASAP, so you can have a clear idea for what's going on. If you're having pain, you may have a stricture somewhere in there that you need to know about. I'm sorry you have to wait so long for a GI visit When I have been in really bad spots, I gave up on solid food all together and stuck to liquid only until a new medication was tried. Just an idea. It sucks, but I was mostly pain free (not all the way - but mostly). I also found that Easy Mac, that highly processed mac and cheese in a cup, goes down really easily when severly flaring. I guess becuase it's so processed and mushy? I eat that, and cup of noodles, just to feel like I'm eating something similar to solid food.

I'm sorry

{and I realized this was a novel. I'm sorry.}

[Deleted]

aimeedyan - so interesting. I tried both easy mac and ramen and they both gave me pain. I apparently can't handle processed foods

I'm in the middle of a flare now - I know this because my joints are KILLING me and I'm completely unmedicated waiting to heal enough to start Remicade + Imuran. I had to wrap my knee and wrist, douse myself in icy hot, and take tylenol before I could fall asleep last night. my tummy has actually been okay though just eating plain grilled chicken, white rice, plain sweet potato, plain potato, small amounts of white bread, and tots low sugar apple juice.

[Deleted]

I usually ride out my symptoms unless they become different from normal. One time I ended up in the ER because I had localized sharp, stabbing pains on the right side, which made me concerned enough about my appendix to go in. Turned out it was just a worse than normal flair up. Usually I just curl up in bed with a movie and sleep until the pain gets better. For me, since gluten is not a trigger, I stick to bland starches like breads and pastas and stay away from anything with heavy sauce or spices until things calm down.

[Deleted]

Mar 13, 2013 15:24:06 GMT -5 jjwritergirl said:

Is the joint pain related to your stomach somehow?  Mine have been terrible on and off. This week I had to ice my wrist every night, and sometimes I can't exercise because my knees feel too sore. I always thought these were overuse injuries and never considered they could be related to food. Could you elaborate?

Patients with Crohn's often have joint pain. It's an immune deficiency disease where the immune system primarily attacks the GI tract but it can also attack your joints, eyes, other organs, etc. many people end up with arthritis. 

Before my diagnosis, i always attributed joint pain to the high impact sports I participated in childhood. It's nice to know the reason I have the pain. 

[aimeedyan]

Yep, joint pain was one of my first symptoms and is now a good indicator of a coming flare. It was like a puzzle was solved when I got my diagnosis!

These crazy auto immune diseases...

[bcv513]

I just saw this, but I had NO idea joint pain was related to Crohn's! I've been to more than one orthopedist and a rheumatologist because of the pain in my knees and feet. One just told me it was because I was fat while the others said arthritis. I can't believe I never made the connection before!

[Deleted]

Mar 27, 2013 10:56:01 GMT -5 bcv513 said:

I just saw this, but I had NO idea joint pain was related to Crohn's! I've been to more than one orthopedist and a rheumatologist because of the pain in my knees and feet. One just told me it was because I was fat while the others said arthritis. I can't believe I never made the connection before!

well it could be peripheral arthritis caused by the Crohn's disease. ibdcrohns.about.com/cs/relatedconditions/a/arthritisibd.htm

so glad this was helpful for you!

joint pain sucks. I have compression wraps, icy hot, and ice packs at home because my ankles, wrist, knees, and neck act up sometimes (didn't know why until I was diagnosed last month - I assumed it was my childhood history of playing in contact sports). I find the best thing is good ol' RICE (rest, ice, compression, elevation). I've booked a chiro appointment for April and I plan to start doing that regularly as well. 

*even though they alleviate joint pain, remember to NEVER take NSAIDs if you have Crohn's. The doctors think my frequent use of NSAIDs (for headaches) contributed to my bowel perforation.

[Deleted]

carrotsmakemefat basically anything besides plain Tylenol

www.nsaids-list.com/

I was a big ibuprofen person before. Ugh.

[bcv513]

Mar 27, 2013 18:08:45 GMT -5 tacom said:

carrotsmakemefat basically anything besides plain Tylenol

www.nsaids-list.com/

I was a big ibuprofen person before. Ugh.

I was a huge ibuprofen person too. Like, almost every day. I think that's been a harder adjustment than the food. Today I woke up with a bad headache and Tylenol just isn't cutting it.