Newly diagnosis 24 year old

[namv]

First off, been lurking for a day and you guys are amazing!

Well my journey is only beginning: Nov 1 i hate a SPICY bowel of kimchii soup. hours later i began to have right quadrant lower abdominal pain. I endured this for 2 days and on Nov 3 2010 i was admitted to ER for sharp right lower quadrant abdominal pain. CT scan reviewed appendicitis. That was removed immediately. Normally done laprascopically but apparently the docotor couldn't even find the appendix because it was just a huge mass where the appendix suppose to be. So they made a 4 inch incision midline near my abdomen and removed the mass. They cut portion of the ileum and portion of the colon and ran a biopsy to find out it was crohn of the appendicitis better than cancer she said lol

*side note i had a bowel adhesion a few days later while at the hospital and went back for surgery! stayed at the hospital for 15 days and amounted a $110,000 tab!*

GI Doctor puts me on 800mg asacol and 4000mg of fish oil for preventive measures and wants to do a colonscopy in 3-6 months.

To be quite honest, i have eaten whatever i liked for the longest time (i'm huge spicy food eater) and i never once had a crohn symptoms until i found out through the appendicitis. I broke down when i heard the result...but being young, optimistic, and persistence with not letting this affect my life i got over it and accepted it.

Of course i read all that i know about crohn's but not quite sure if my symptoms are of crohn or because i'm still fresh from post-op? I have been having tons of gas and feeling bloated and is quickly relieved with simethicone (prescribed that myself lol). Before that the GI doc. told me to take acetaminophen and im telling you i will get liver problems before that even provide any pain relief! This past few days i been having abdominal problems (lower portion near the pelvis). I had enough and decided to not eat anything for a day and it did wonders (a little convince i have crohn's i guess).

WEll enough of my ramble...i do have a few questions for you ladies and gents (what? it was going to come out sooner or later lol).

1. How do you know if your having a flare up, where does it localized, how does it feel?
2. Vege has lots of fiber but also adversely affects us...does that mean you can't take supplements like metamucil? or is it the actual vege and how it's digest that cause flare up?
3. I can eat a lot of things that most people can't eat...is that alright or should i be " safe" and just stay away from it?
4. Do you REALLY have to stay away from red meat?
5. What's the difference between remission and having symptoms from a flare up?
6. How low is low fiber? Alternatively, what's the maximum would you take in a day? main concern is low fiber has adverse effects such as on your colon and colon cancer.

Thanks you guys, i'm glad i found this board!

 

[namv]

oops i forgot to ask...if your not having symptoms does that mean your intestine is not inflammed and vice versa?

 

[Nica]

Hi Namv,

So sorry you got this diagnosis. Its a hard one. Your questions are kinda hard considering we are all a bit different. But I will go with my experience.

1. Flare up, I have LOTS of D. That just won't stop I get low crampy pains, that will literally stop me in my tracks, the need to use the loo is unreal. Other signs of a flare are really tired, bloated stomach, constipation (thats kinda new for me), achy all over.
I live with active disease but I don't consider that a flare. I have massive weight loss when I am really flared up (20 pounds in a week!).

2.Fiber. Metamucil KILLS me. It is like a nightmare. Adversely if I am not having lots of D I can eat most things, there are a few that never go over well like popcorn and raw carrots. You will have to play with your diet to see what triggers you and what does not bother you. Keep in mind in a true flare most things may bother you. The fiber itself does not cause the flare up but it will make your symptoms worse. It can cause blockages if you have small bowel disease as well. No one is really sure what causes crohn's or a flare up, but for most people fiber makes it worse when it is active. Also if you think about fiber its rough (called roughage) so you would be putting something rough over top of ulcers, it is not comfortable.

3 Diet we are all different. You will see some people eat hot sauce ( I do) others can't eat any spice at all. When you get into a flare up you will most likely not want to eat anything and will avoid the foods that cause the most pain. It takes time to figure out what hurts and what doesn't.

4. I eat lots of red meat. It does not bother me. In a flare I would not eat much of it as its hard to digest, again stuff running over ulcers.

5. Remission is when you are not having any symptoms of the disease. No D, no Pain, no cramping or minimal amounts of them. The closest I have come to remission was not what I would call normal, but I was able to function fairly well. There are lots of different levels that the disease can be at from my experience. From really bad can't get out of bed cept to use the bathroom to eh my stomach hurts a bit but I am going to to Disney world and just watch where the bathrooms are.

6. I try to stay on a pretty low fiber diet as I always have symptoms of some sort and now have quite a bit of scar tissue. I don't know the numbers on it though sorry.

Hope this helped some, I am sure others will sound off with some things that are different than what I have had so far.

Oh remember that nothing is TMI on these boards, we all have lots of ikky symptoms and are here to help each other.

 

[crazycanuck]

Haha ok well first welcome to the forums and good god is kimchii ever good....
Ok now for your questions.

1) as nica said generally your symptoms you feel (may be different than anybody else here) are bad. For most people lots of d or some constipation, sometimes weight loss, bloody stool, pain, and sometimes nausea. Thats what I get anyway yohra may be different.
2) metamucil during a flare hurts me bad but in a recent development Im out of my flare and was actually very very very constipated and had to take some to loosen things up.
3) Eat whatever you like that doesnt hurt you. Ceaser salad kills me it may not for you so absolutely you can eat it. Takes some time to figure out what does or doesnt affect you but you'll get it.
4) I eat red meat daily and no problems for me whatspever but again everyone is different it may or may not affect you.
5) remission again as nica said is when you feel normal. 2 or so BMs a day, no pain, a lot of your no no foods you can eat again etc
6) I stay very low fiber when flaring and when not I relax off of that quite a bit. Again though find what works best for you.

Best of luck on this adventure and sorry for your hospital tab.

Thanks for joining though lurkers are creepy haha kidding of course.

 

[crazycanuck]

Sorry just to add Im sure you notice Nica and I's answers are very similar and while a lot of us feel very similarly and have many of the same symptoms, food restrictions, and pains everybody is slightly different. You may go through some hard times figuring your own disease out but thats all very normal and you'll start to understand better as you go and these forums are a huge help.

 

[Nica]

Yep exactly C.C. everyone is a bit different with this. If you look on the food forum you will see how different everyone is. A lot of it is just figuring out what you can and can't have. It also depends on where your disease is at, for instance mine is Crohn's Colitis, it only is in the colon (hopefully not moving!) so I don't have nausea or vomiting, but with small bowel disease you find many people who do.

For right now I would take it easy on fiber and the other questionable items, when you are feeling better after surgery start to play with your diet a bit and see what bothers you and what does not.

 

[namv]

thanks for the insight...when you are testing food...are the results pretty quick? most of the time i see people eating one food and moments later they are running to the bathroom or on the floor holding their stomach...do i get feedback on food that fast? (your experience would be nice)

btw..when you guys are having diarrhea how bad can it get...cuz i think mine is getting pretty bad...i'm literally urinating out of my rectum and when i look in the toilet it's the color of urine. im' so worried that there is a fistula from my colon to the bladder has anyone experienced this or know how bad diarrhea can get?

 

[crazycanuck]

Yes call it peeing out my bum haha different word choices though ;p when I was really really bad I was going 15-20 times a day for atleast 5-10 mins per sitting and not a single even semi-formed stool. Again though tell your doctor.

Also everybody has semi different transit times. For example if I eat Mcdonalds you will see me running for a bathroom within 30mins. If I eat too much sugary candy it will likely be the next day Im feeling that one. Its difficult but with experience becomes easier to note which food it was.

 

[namv]

ok diarrhea can become like pee, check lol but i do plan to go see a doctor (currently not in my home state) this is so weird...everything was fine like 3 weeks ago then now this weird onset of symptoms...should i be saying "welcome to crohnville"??? this is still all new to me as i've never had crohn symptoms before being diagnosis...so frustrating...one doc wants to blame these symptoms on being fresh post op but it all seems so similar to crohns...and my stomach is jarring and gurggling like crazy!

 

[Jennifer]

1. How do you know if your having a flare up, where does it localized, how does it feel?

Everyone is different even if the Crohn's is affecting the same area. For me I have pain in my lower right hand quadrant, mucus in stool, blood in stool, diarrhea, and a general sick feeling like body aches and fatigue.

2. Vege has lots of fiber but also adversely affects us...does that mean you can't take supplements like metamucil? or is it the actual vege and how it's digest that cause flare up?

There are enzymes in the peels of certain foods and in nuts etc. that are difficult to digest for anyone. If you have an issue with any item, peel it instead or limit your intake of nuts. Steam veggies instead of eating them raw if you have problems eating them.

The main thing to keep in mind is that everyone whether you have Crohn's or not has trigger foods (foods that cause symptoms like diarrhea, gas, constipation etc.) that trigger symptoms but having these symptoms does not mean you are in a flare and eating whatever you want even will not bring on a flare. The food we eat does not make us sick, its the disease itself and it acts up whether you're eating boiled salad and tofu or eating pizza and fries every night.

3. I can eat a lot of things that most people can't eat...is that alright or should i be " safe" and just stay away from it?

If you can eat it and feel fine after wards then go ahead and eat it.

4. Do you REALLY have to stay away from red meat?

No. If it doesn't bother you, then there's no reason to completely cut it out of your diet.

5. What's the difference between remission and having symptoms from a flare up?

Remission means that you aren't having Crohn's symptoms. That includes inflammation and physical symptoms like constant pain, bleeding etc. A flare generally means that you're out of remission but you can go back into remission with proper treatment.

6. How low is low fiber? Alternatively, what's the maximum would you take in a day? main concern is low fiber has adverse effects such as on your colon and colon cancer.

I was never told that I should limit my fiber or increase it. It depends on the person at this point. Generally you do a low fiber/low residue diet when you're in a flare to help reduce symptoms but its not your punishment diet for the rest of your life for having Crohn's.

Welcome to the forum!

 

[namv]

When you say mucus in the stool what does that exactly look like?

 

[Jennifer]

Its the texture of mucus like a booger from your nose (the fresh kind not the crusty ones). It can be near the same color as your stool or around there but tends to look milky white or yellowish. Mucus in stool generally means that there's inflammation in the intestines.

 

[crazycanuck]

Hahahaha thats the best description of mucous Ive ever heard. To add though I sometimes find little balls of white and other times long stringy white mucous.

I remember the very first time I had wicked symptoms although Ive always gone to the bathroom more than most kids. But yes I can actually point to the exact day and time it almost litterally hit me.

 

[namv]

So mucus can virtually any color if it can look like the color of the stool...so a goopy consistency is what I'm looking for...btw most people say they don't have a flare up but I'm having crazy diarrhea no mucus and I'm so hungry... In fact I'm always hungry during no flare up or flare up...anyone have that problem? Should I just pump myself full of Gatorade until I feel full?

 

[Jennifer]

Sometimes when people feel really hungry all the time it can also mean that you're dehydrated (which I'm sure you with the diarrhea) so ya I'd actually increase liquid (water etc) intake.

 

[Nica]

Hi Again

I have been out running around all day so I didnt get back to answer, but Crabby always has good answers, better than mine I think!

I LOVE the mucus description, along with "Peeing out of my bum" yep thats about it!

With the diet thing what Crabby said is right. Food does not cause crohns. It can make you feel like utter poop, but it is not making the disease itself worse. With the exception of if you have a blockage or stricture going on then be careful with "bulky" food. For me my symptoms are worse with fiber, lots worse to the point I don't eat veggies that are not well cooked. I generally see things that disagree with me in the pot later. I can't drink either. Any booze is like a hang-over for a week, just not worth it! Others can drink just fine!

There are lots of extra-intestinal issues that crohnies can get, like skin rashes, eye inflammation and my personal favorite inflammation of the spine and other joints.

I would drink tons of gatorade, water and sprite, if you still feel hungry try something really light like toast or white rice and see how it goes.

 

[Jennifer]

I would drink tons of gatorade, water and sprite, if you still feel hungry try something really light like toast or white rice and see how it goes.

Also more protein is a good idea because it tends to make you feel fuller longer or at least not extremely hungry.

 

[crazycanuck]

If you can tolerate it ensure or boost is a widely used product by members here to get as many nutrients as possible back into them.

 

[namv]

Update... At the er admitted for shooting pain In the upper back... Docotr are trying to figure out why I'm having back pain and if it's related to my recent surgery or crohn... Had anyone have back pain... Clearly mine was severe to the point he ambulance rush me to er... Worst pain ever... They had to administer 2 dose of diluaded to get it under control ... 3 would have been better in my opinion ... I'll keep u uptodate I wish i knew where the back pain is coming from...

 

[Jennifer]

Back pain is common but not generally painful enough to send you to the ER. Seems like something is going on and I'm glad that you're getting it checked out. Generally when in doubt, go to the doctor and if you can't be seen right away (same day) go to the ER. Keep us posted for sure.

 

[georgiegirl]

I shared the mucous description with my husband, he thinks we're all gross! And I can't make any comment on it, I've never had it. But I completely agree about peeing out of my butt - I get that a lot!

I think everyone else has answered your questions the same as I would. It's a little bit of trial and error - you'll be different from everyone else as to what you can tolerate in or out of a flare. However when everyone says they have trouble with something in particular (corn and corn by-products for example), I'd be careful and make sure you test out that theory when you have a couple of days to recover if necessary.

Personally, I'm also lactose intolerant (which is fairly common with crohn's I think), and it's that which really causes more issues for me. However undercooked veggies (esp potatoes) I've always had problems with. You might need a food diary to help (check out the wiki). And I normally have "issues" within about an hour or two of eating something I shouldn't. But again...everyone is different.

I, unlike Nica, have no problems with alcohol (bourbon at least) and while I might feel a little crap the next day, I put this down to hangovers! That's me at least!

Anyway, best of luck with your next colonoscopy, and hope you didn't have to pay the $110k hospital bill!!!

 

[namv]

hah, out of pocket 1500 then they pay 100% just got back from the ER. had an x-ray, ua, blood test, and ct-scan. everything normal, no bowel obstruction, the astamosis is slightly inflammed which could be expected or from crohn but no loops or anything of that sort. they said they found fluid in the belly which was peculiar and wasn't too concern. ok here is the kicker...gallstone...explains the back pain but they said it was weird how my back pain was up near my scapula rather than right in the middle or lower back. they are still confused why my back pain was so high...but gallstone seems to be the culprit they were relived that i didn't feel pain when they palpated the gall stone and that my liver function test were normal so lucky me the gallbladder is not damage....i haven't read much on it but it seems like i got to live with this one too!!! i may talk to my doctor and get it removed as a preventive measure to future complications. they put me on norco (thank goodness i have some pain control...wish i was on the diluadid though ) oh potassium low...obviously from the mass about of diarrhea i have been having. i'm still convincing myself that these are of crohn origins! anyways enough drama tonight going to get some sleep and save those norco for emergency...i only have 10 of them since it was prescribed in the ER. going to continue with a liquid diet tomorrow until diarrhea stops too. thanks for your guy's support!

 

[Nica]

Gallbladder is crohn's related, got mine out in 09! OH yeah that hurts. I went for emergency surgery on Halloween, well I was in for Halloween night and went for surgery on Sunday morning.
Potassium is Crohn's.

Crohn's SUCKS! Keep us posted, oh take it easy on norcos, it can cause constipation, or in us crohnies cause normalcy, so highly addictive cause it makes the "pee out of the butt" stop!

 

[namv]

Omg after being discharge in the middle of the night they want me back because they say after reviewing the ct scan result they think I have an infection.... Wouldn't that be very symptomatic??? They say the pain in my back can be from that and are not convince that it's the gall stone that is causing it. Man this is horrible luck I'll post update after they talk with me

 

[crazycanuck]

Oh wow Im so so sorry best of luck and please keep updating!

 

[Jennifer]

Personally, I'm also lactose intolerant (which is fairly common with crohn's I think)...

Actually its common with every adult who has IBD or not. Humans are able to break it down up until they are children but as we get older we stop producing or don't produce enough of what's needed to digest lactose. I made a better post about it a while back with links and such but I'm too tired right now as I still have a pneumonia. I'll find it later but basically most people can't break down lactose after a certain age because we're supposed to be eating solid foods and not suckling anymore. Not to mention we weren't raised on cows either.

Edit: Good luck Namv. If it is an infection I hope they find out where from and get it fixed real soon. Yes please keep us updated.

 

[namv]

So I was on vacation while being In the er and what not... Was suppose to leave on the 31 but because my health insurance was limited when out of state decided to return home last night...they put me on moxifloxain antibiotic... The last two two day I've been feeling pretty good I even gorge on things I would swear would make me sick .no pain so far my lower stomach feels fine... I need to make an appointment to day with my primar care provider to see the surgeon who operated on me so she can look at the ct scan that was taken in the out of state hospital and see where she will go fro
There... I'm also contemplating about getting my gallbladder removed being that I'm young and thus more chances of complication later down the road.

 

[crazycanuck]

Wow well best of luck with whatever comes next and I am glad the stomach is feeling better.

 

[Jennifer]

Keep us posted on what the surgeon has to say. Hope you're ok.

 

[namv]

visited my doctor today. we talked about what happened and she suspect that the gallbladder is the culprit of the pain even though it is really high in the back. she is going to her meeting tomorrow and i will be the future topic lol i'm a little concern to have crohn and gall bladder removed because with the gallbladder removed, there's no more bile storage and constant bile in the intestine leads to diarrhea. and crohn's gives lots of that already...anyone experience this and knows more about the lifestyle change is going to happen. btw still feeling great...even drank a can of pop and no adverse effects. i recall eatting something with nuts too and still doing good. very weird. if i can eat everything then how can i be a crohn patient?

 

[Astra]

Hi namv
and welcome

You've had great advice, nothing more to add, only to say hope you're feeling a bit better?
xxx