So i heard there were some stealthy people here with chrohn's.

[ImOnIt]

So I managed to post without any kind of message at all.

Three weeks ago I was 75kgs (160lbs i think) and since then I have dropped about 8kgs/ 17lbs. I have not had a good night's sleep. I was hospitalised for this and had a related abcess treated, and after a few sleepless nights I was sent out the door with a nice brick of prescription medicine.

I need to contact the university and discuss withdrawing from some papers. It is exam season and I don't think I can cope. My current job has been labouring with a painting/ resin/ floor company. Think power tools, long days and manual labour. Today, I had to take multiple breathers to walk twenty minutes - and therefore i will be required to find a new job.


I do have the support of my family and sweetheart of 4 years.

 

[graceanne]

That chr

Netzah and I have crohns disease. I know of one other person, but it's up to the person whether they want it known.

 

[snowy ciara]

I'm Number 3; its okay Gracie, I outed myself on the Flu shot thread, I think.

((ImOnIt)) I know it's hard. If you wanna vent or cry or anything, give us a holler!

 

[Netzach]

So I managed to post without any kind of message at all.

Three weeks ago I was 75kgs (160lbs i think) and since then I have dropped about 8kgs/ 17lbs. I have not had a good night's sleep. I was hospitalised for this and had a related abcess treated, and after a few sleepless nights I was sent out the door with a nice brick of prescription medicine.

I need to contact the university and discuss withdrawing from some papers. It is exam season and I don't think I can cope. My current job has been labouring with a painting/ resin/ floor company. Think power tools, long days and manual labour. Today, I had to take multiple breathers to walk twenty minutes - and therefore i will be required to find a new job.


I do have the support of my family and sweetheart of 4 years.

What prescription medicine if you don't mind my asking? If its steroidal sometimes that knocks stuff back well - though you'll need a break clearly.

Is there any kind of disabilty policy at your company so you can get partial pay while out rather than quitting outright?

My bod is making a huge protest over my infliximab being 2 weeks late after my vacation, this is a BAD time of year for flareups almost everyone flares in fall.

 

[Netzach]

Unrelated:

Excuse me, CDC says there are 100,000 americans with UC/CD but everyone I know seems to know at least 1 - something seems off. (I know we're not all americans but 4 people on one stupid BDSM board???)

 

[snowy ciara]

I had to go Google for numbers... the eMedecine website says about 7 in 100000 in the US and had no numbers for Canada. The Health Canada says that there's about 170000 cases in Canada.

 

[ImOnIt]

Prednisone (corticosteroid), Pentasa (mesalamine).

I've noticed that drinking water constantly helps a little with digestion.

My reading doesnt tell me too much. What foods/meals have you found to be least irritating?

I would be so proud of a nice, real poo. <.<

 

[snowy ciara]

Right now, I'm on Cipro, Prednisone and Mesalamine as well. I'm flaring. My Dr also added slippery elm (an herbal) but that's one that I'll be taking when I'm not messed up.

Foodwise, you'll need to experiment a bit to see what works for you. I've found that 6 smaller meals are easier for me. Here are the things I need to avoid all the time:

All nuts and seeds (exceptions are creamy peanut butter and almond milk). This includes strawberries, raspberries and blackberries. The tiny seeds are torture.

Full fat milk and dairy products.

Raw veggies with the exception of some of the leafy ones. Spinach is good, lettuce is too crunchy.

And I'm even having problem with meat lately. I don't eat a lot of it anyway, but right now I can only tolerate fish and well cooked (think falling apart) chicken.

Corn and whole grains are a no go for me as well.

When I'm not in a flare, I can tolerate stuff like Cheerios, oatmeal, cooked rice, shredded wheat if it's mushy. I get around the berry issues by using jelly instead of preserves. Jelly being the strained juices of the fruit and then made into jam like, for PB&Js, not Jello. I hate hate hate hate Jello with the passion of a thousand burning suns. Crunchy veggies that are steamed and cooked are usually okay. I can't handle normal pasta, but the gluten free kind doesn't muck me up as badly. Since I can't tolerate most meat proteins at any time, I have to be creative to make a balanced diet. I can handle eggs and peanut butter most of the time, so I get a lot of proteins from those. I can't eat tofu at all. The only corn products I can handle are corn tortillas and tamales but never in a flare.

Flares suck. Right now, I'm living on chicken broth, peanut butter on unsalted saltines (unsaltines?), boiled eggs and green tea.

So the best advice is to wait until you're not in a flare and experiment a little bit.

 

[graceanne]

this is a BAD time of year for flareups almost everyone flares in fall.

QFT

Unrelated:

Excuse me, CDC says there are 100,000 americans with UC/CD but everyone I know seems to know at least 1 - something seems off. (I know we're not all americans but 4 people on one stupid BDSM board???)

SERIOUSLY!

Maybe kink causes crohns.



But, seriously, we get many more we'll have to ask for a crohns disease section. lol

Prednisone (corticosteroid), Pentasa (mesalamine).

I've noticed that drinking water constantly helps a little with digestion.

My reading doesnt tell me too much. What foods/meals have you found to be least irritating?

I'm on Asacol and Cymzia (like remicaid, but better). Imuran didn't work, I'm allergic to remicaid. I hate HATE HATE prednisone, but it works. Get off it as quickly as possible, though. It will FUCK up your system.

My big no-no's are any corn product (fyi, corn syrup and monosodiumglutamate - msg - are corn products). Most crohnies I know can't do corn products. I also can't do stuff with seeds (like berries), and sadly chocolate is on my no no list. Peanuts don't get digested, when I eat them, and they're sharp - they tear holes in me on the way out.

Honestly, while you're still sick your tummy is going to be crankier than when you're in remission and you'll have to be a lot more careful. When I'm not in remission I also don't eat any milk, anything with gluten (wheat flour and oats) in it, ANY high fiber foods (like uncooked veggies - salad, broccoli, etc - and the skins of fruits - apple skin is really fiberous). I eat a lot of eggs (lots of good nutrition, and essential oils). Fried foods are a no no, but grilled chicken is awesome. Ground beef is difficult, because of the fat in it, but lean meat is fine. Just treat your tummy like you have the flu, banana's, rice, eggs, etc. Gluten free bread is cool, there's a brand that is AWESOME but I can't recall what it's called. Netz? What's that bread you told me about?

I would be so proud of a nice, real poo. <.<

I call my hubby happy and giggling when I get a formed stool.

 

[Netzach]

Prednisone (corticosteroid), Pentasa (mesalamine).

I've noticed that drinking water constantly helps a little with digestion.

My reading doesnt tell me too much. What foods/meals have you found to be least irritating?

I would be so proud of a nice, real poo. <.<

YES drink all 64 oz a day, for sure.

I make chicken soup and literally live off of it while I am symptomatic. Chicken parts boiled, carrot and onion which you take out again, then puree the carrots and return the meat to the broth. I only use the rice/toast belly band aid at the absolute worst points of being symptomatic - I do subscribe to some of the theory behind the specific carbohydrate whackos and the faster I get long chain carbs gone the better - bananas are also great, I do bananas with smooth almond butter for breakfast all the time. And apple sauce. Lots.

I also have been having very non-champion crap lately, ideally infusion will fix this up again.

 

[Netzach]

QFT



SERIOUSLY!

Maybe kink causes crohns.



But, seriously, we get many more we'll have to ask for a crohns disease section. lol



I'm on Asacol and Cymzia (like remicaid, but better). Imuran didn't work, I'm allergic to remicaid. I hate HATE HATE prednisone, but it works. Get off it as quickly as possible, though. It will FUCK up your system.

My big no-no's are any corn product (fyi, corn syrup and monosodiumglutamate - msg - are corn products). Most crohnies I know can't do corn products. I also can't do stuff with seeds (like berries), and sadly chocolate is on my no no list. Peanuts don't get digested, when I eat them, and they're sharp - they tear holes in me on the way out.

Honestly, while you're still sick your tummy is going to be crankier than when you're in remission and you'll have to be a lot more careful. When I'm not in remission I also don't eat any milk, anything with gluten (wheat flour and oats) in it, ANY high fiber foods (like uncooked veggies - salad, broccoli, etc - and the skins of fruits - apple skin is really fiberous). I eat a lot of eggs (lots of good nutrition, and essential oils). Fried foods are a no no, but grilled chicken is awesome. Ground beef is difficult, because of the fat in it, but lean meat is fine. Just treat your tummy like you have the flu, banana's, rice, eggs, etc. Gluten free bread is cool, there's a brand that is AWESOME but I can't recall what it's called. Netz? What's that bread you told me about?



I call my hubby happy and giggling when I get a formed stool.

The brand of gluten free stuff I mentioned I think was Pamela's - Pamela's mixes, they're GF and pretty tasty.

I use specific carbohydrate when I'm being really careful, these people sound verifiably cuckoo but it works and it's how I eat as long as I am not having any blockage issues.

www.scdiet.org

very evangelical and annoying and whacky - but works to my annoyance. No not everyone can be "drug free" but even when I'm on meds and stable I feel a hell of a lot better eating this way. Do NOT dive in to fruits and veggies while symptomatic - do the chicken soup thing.

 

[graceanne]

Do NOT dive in to fruits and veggies while symptomatic

QFT..


Learn from our mistakes.

 

[Netzach]

QFT..


Learn from our mistakes.

Well and also I see so many people saying "scd tore up my guts" well did you do the intro diet? "noooo...."

 

[graceanne]

Well and also I see so many people saying "scd tore up my guts" well did you do the intro diet? "noooo...."

I know. Too often people think the meds are a magic fix that will put you back to normal.

Not to be depressing, but we'll never be 'normal' again. What we eat is something that is always going to be important, and even more so when flaring.

 

[Daddysledgwalkr]

Please, whatever you do, stay under the care of a good specialist.

i don't have Crohn's but i did have IBS for 25 years and eventually Diverticulitis. i also haven't had medical insurance in 5 years so no medical care.

Two years ago, i was having a really really bad flare up and was in extreme pain. my Daddy finally put his foot down and made me go to the ER, money be damned. They did a LOT of tests, told me my gall bladder was on the verge of becoming my next problem and that the current problem was just an extreme case of diverticulitis. Gave me mega doses of IV antibiotic, sent me home 4 days later with pain meds, antibacterial medication and probiotics. Told me to follow up with a gastroenterologist ... which i never did... that $$ thing again.

Two weeks later i woke up to excruciating pain and obvious physical signs of serious trouble. Went right to the ER, and after a few tests was told that my colon had ruptured and i'd need to have surgery. Daddy and i were scheduled for a trip to New Orleans in less than three weeks and i was putting on a fundraiser for 400 people two weeks after the that so i told the doc i would be back in a few weeks to have it done, let's get it scheduled.

He said, sure, you can go do all those things and come back in a few weeks but we won't be putting you into surgery, we'll be putting you in the ground. This is a matter of life and death and you need your colon removed as soon as we can get the infection under control, right now, it would kill you just to open you up.

That scared the HELL out of me!!!

So ... i had my sigmoid colon removed, and i was EXTREMELY fortunate that i didn't have to have even a temporary colostomy ... they successfully put me back together in one surgery, which was unexpected.

Hindsight's 20/20 and if i had been seeing a specialist instead of the ER docs and a regular GP, it could have been prevented. Now i have an ugly scar dissecting my entire tummy and will be on medications for the rest of my life ... but i am so thankful that's ALL i have to deal with!

 

[ImOnIt]

Today I was feeling better briefly and ate delicious baked goods. I suffered very quickly and had to sleep a couple hours.

I'm ~8kg under my weight of a month ago, and since eating has always been the hardest part of physical training for me, I'm concerned about my body and health.

Yeah, I have a visit scheduled with a specialist in 2 days. My doctor called to check up on me, and thats good to know.

 

[graceanne]

Today I was feeling better briefly and ate delicious baked goods. I suffered very quickly and had to sleep a couple hours.

I'm ~8kg under my weight of a month ago, and since eating has always been the hardest part of physical training for me, I'm concerned about my body and health.

Yeah, I have a visit scheduled with a specialist in 2 days. My doctor called to check up on me, and thats good to know.

Gluten! Yummy but not good for the upset tummy.



I want to go on record that I DID NOT rhyme that on purpose.