New to forum and crohn's .. glad to see an 'active' site for crohn's citizens :)

[Alice]

new to forum and crohn's .. glad to see an 'active' site for crohn's citizens

hi everyone,

i just recently found out i have crohn's 'ileitis' .. i'm 50 yrs old, but had my gallbladder removed (fist-full of stones) at age 21 after 4 years of severe pain and misdiagnoses (ie - stomach muscle spasms).

i was at work on january 5th when i felt very full .. i thought i had a bad case of indigestion or trapped pockets of air .. the pain over my ribs got so bad that my b/f gave me some stuff to take to flush out my system .. well, it didn't work .. let's just say the trash can was half full when i got done 'that time' .. then, my b/f gave me some pepcid ac .. then, after 30 minutes, i filled the trash can 1/4 full.

my b/f took me to urgent care .. the doc asked which emergency room i wanted to go to (there are 4 local hospitals), because the tests showed a blockage .. i was in the hospital from the 6th to the 10th .. i escaped surgery that time .. the doc put me on a liquid/soft food diet and told me to see a gi doc asap because i might have crohn's .. this is the first time i ever heard of this disease.

i saw the gi doc .. he asked lots of questions .. i never realized that the excess gas and loose stools weren't 'normal' for my age .. he set up a colonoscopy for the next day .. prep was NOT fun, i was asleep during whole precedure .. the gi doc said i had 3 strictures 2 inches apart after entering small intestine .. he used little balloons to get past these .. he went in another 6 inches and found nothing .. he ordered a few tests and prescribed entocort ce.

right now, i'm waiting for the bone density results .. my physician has me on 10,000 iu's of vitamin d .. after testing, she said my level was only 16 and should've been 32 .. she said i need more sunlight because it's the best source of vitamin d .. essential vitamins, minerals and other nutrients can't get properly absorbed into the intestinal walls if there's a vitamin d deficiency.

there's something that's different with my crohn's .. i've been steadily gaining weight and want to lose alot of pounds and inches .. i quit smoking on the 6th, when i entered the hospital .. i'm still dealing with the whole 'hand to mouth' thing .. i hope to learn how to eat, drink and exercise to keep me out of the hospital .. btw - the gi doc said if/when i get another blockage, i will be going into surgery.

if there's anything i forgot to include or you want to ask questions, i'll be happy to answer to the best of my ability.

thanks,
Alice.

 

[Stleger88]

Welcome

Hi Alice and Welcome to the Forums I really haven't found any better place for answers then here so I hope we can help you, I know what a "blockage" is like I had mine before they even knew I had crohns they took me to the ER and gave me some stuff that looked like liquid plumber and burned my insides, but it worked. I found out the reason I was getting that way(after I was Diagnosed over a year later) was the foods I was eating and if I didn't change my eating habits it was gonna happen again, everyone's crohns is different and what works for someone people may not work for you, its a trial and error field for the first few years im afraid but it gets better I hope you find some help here and welcome again

 

[Guest]

hi Alice, and welcome really pleased you found us!

it must have been quite a shock to get your diagnosis as you'd never heard of Crohns before.. most people i know who are waiting diagnosis are the opposite way round.. they think they may have it but haven't got medical proof yet.

having said that, when i was diagnosed many years ago i had just about heard of it, i knew one person who had it, and that was it. this time around has been completely different (better) because i've found this forum.

have a good old read through our diet threads.. there is a lot of sound advice on avoiding trigger/troublesome foods.

 

[danman]

Hiya Alice, welcome to the forum. Enjoy the fun parts too.

 

[soupdragon69]

Hi Alice,

Welcome!

You are not alone on the aspect of low Vit D and I am just one of several that can hold my hand up and say yes I have that problem too!

I ended up with my crohns in the same place as you. Keep an eye on your Vit D levels as I didnt absorb the oral tablets they gave me and ended up with lower levels and an injection to improve it! A question for you would be - do you know what your cholesterol levels are? My reason for saying this is where your crohns is can impact on how you absorb/deal with fat. If your cholesterol is very low it can contribute to your Vit D being low as we absorb approx 90% (the other 10% is via diet) via our skin from sunlight but we need cholesterol in our body fat to help convert it into usable stuff. My cholesterol has been extremely low for years and no one could tell me why. At least now I have an answer! Its just a thought...

I also have gained weight with crohns and not lost it. In fact I would go as far as to say I lose weight either when I am well OR when on elemental supplement drinks. The docs and my team take it in their stride and tell me not to worry but I hate it! I think it is partly due to the fact I keep ending up on steroids for my crohns but also my asthma and arthritis and I gain alot of fluid also when on them.

Anyway, welcome again. Looking forward to seeing you around. ((hugs)) we all know getting the diagnosis and it sinking in can be tough. You have found genuine friends here remember that!

 

[teeny5]

Hi Alice! Welcome to the forums. I was shocked to hear that I have Crohn's. I have never even had a major illness or broken bones. I hardly even ever get sick (aside from minor allergies). Changed my whole life around. I have learned to listen to my body and take better care of myself. I hope you find this forum useful. It is the best thing I could have ever stumbled upon.

 

[Alice]

thanks pen ,

i've never had a kidney stone .. some of my siblings have suffered terrible pain with them, though, so i know it's no picnic .. i'm 1 of 8 .. 4 sisters and 3 brothers (including one born in '55 who passed on from cancer in '91).

i keep hearing horror stories about prednisone .. i haven't heard or read anything positive about it, anyway.

again, thanks for the warm welcome.

 

[Alice]

thanks stleger88,

the first thing that happened when i got to the er was they put a tube in my nose to drain my tummy .. they said it would ease the demand on my plumbing .. the tube eventually fell out .. lol .

they hooked me up to an iv then put me in a room after about 5 hours .. no food, no water, no ice chips .. after a couple of days i got ice chips .. gradually worked up to a full liquid diet before leaving .. they kept changing my iv location because of excessive swelling .. when i figured out the swelling was occuring right after they gave me morphine, i told them to leave the needle out of my arms as long as the pain stayed away .. that's when i found out i'm allergic to morphine.

i was wheeled downstairs to get some images taken every 15 minutes for 2 hours after i drank way too much barium .. the last 15 minutes was the worse pain as they wanted me to lay on my belly so they could get clearer images.

i'm going to start logging what i eat again .. when, what, how much, reaction after 2 hrs, reaction after 12 hrs, and reaction after 24 hrs .. medications, too.

without teeth or gallbladder, and now learning i have crohn's, it sure makes finding a suitable diet that much harder .. i'm wondering what's safe for me, besides plain ol' water .. lol.

thanks for the warm welcome

 

[Alice]

hi dingbat,

i'm happy i found all of you, too

when the pain behind my ribs got worse, i thought my ribs were going to explode .. my b/f took me to a restaurant after picking me up from work .. after just picking at soft food and taking 2 sips of sprite, that's when he knew it was time to take action .. i was confused and didn't understand why i was in so much pain .. i thought i was going to die .. i kept trying to figure out what i had eaten in the past 24 hours.

after the hospital doc said crohn's, i went to the computer room and googled it .. it said ' problem weight loss' on every link as 1 of the symptoms .. i was confused as i was steadily gaining weight, even before i quit smoking.

something that i remember my mom asking years ago is starting to make more sense these days .. she asked me if i ever heard of stopped up plumbing .. i said a plumber needs to be called to unclog the pipe .. she said she wasn't talking about that kind of plumbing .. she held her stomach and said she was talking about human plumbing .. i told her it wasn't normal as far as i knew and the doctor should be called to make sure everything was ok or not (i was about 11 or 12 years old then) .. she never mentioned it again .. she is now 80 and just going into the dementia thing, so asking her would be pointless now .. she creates her own reality as she goes, nowadays.

the gi doc said it can run in families, so i've discussed this with my 5 kids .. since her sophmore year, my 22 yr old daughter's body has trouble absorbing 1 of the proteins .. til then, i didn't know there was more than 1 protein .. duh.

imagine that .. i'm still learning new things at 50 .. sometimes i wonder what i'll be learning at 70

enjoy and thanks for the warm welcome

 

[Alice]

hi danman,

thanks for the welcome to the forum .. i will be looking around soon .. just want to get replies back, so i don't appear rude .. you all seem to be very nice, friendly people .. and, that's the kind of people i like to be around .. upbeat, positive, happy, etc

 

[Alice]

hi soupdragon69,

thanks!

i worked the graveyard shift (10 pm to 6:30 am) for about 3 years .. when i got home, i slept all day, waking up around 5 or 6 pm .. so i wasn't getting any sunshine, except for a few hours worth on the weekends .. i'm a redhead and burn easily, so i didn't really see any harm in staying away from the sun .. boy, was i wrong.

my doc said my good cholesterol level is good where it's at .. my bad cholesterol level is way too high .. i'm taking 10,000 iu's of vitamin d a week for 8 weeks .. then doctor wants me to have another blood test done to check vit d level.

i had some tests run last year concerning pain/swelling in both wrists (one wrist for a couple months for 3 years in a row) .. the rheumatologist said the test showed swelling, but it doesn't show where, what from, or how to fix it .. it just verified that i had abnormal antibodies .. the gi doc explained that the white blood cells are attacking good bacteria in my intestinal track and that the entocort ce helps to protect/coat the lining of my intestines .. just sucks that it's a steroid that's making me gain weight when i want to lose it.

i did lose about 10 lbs while in the hospital .. but then, anyone would lose at least that amount if they weren't allowed anything by mouth and then only clear to full liquid diet for 4 days .. lol!

thanks for the hugs!! .. and, hugs for you, too!

 

[Alice]

hi teeny5,

thanks!

i've never had a broken bone, either .. i have had the flu once super bad .. it was in the early 80's .. i couldn't stand up .. i crawled into the kitchen to make tea .. i crawled to the toilet .. every time i would try to stand up, i got dizzy and felt faint .. i stayed in bed most of the time under the heavy blankets, even when i felt hot, so i could break the fever and sweat it all out.

i used to be strong .. it is very humbling for me to admit weakness in my older age .. or, to allow others to do for me what i did for myself .. i'm also dealing with sciatic nerve pain in my right leg, from hip to big toe .. felt 'pop' in lower back/butt after slipping on soapy floor i was mopping back in mid-august of '08.

glad to hear you're more in tune with your body .. now it's my turn

i'll check out other sections of this site/forum later .. i'm a slow typist .. i need to get some sleep now .. it's so good to find this place .. all the others' last posts were made back in 2006 .. very scary!

again, thanks for the warm welcome!

 

[Stleger88]

yeah for awhile I couldn't eat anything solid so I bought a food processor and it makes everything so much easier ( can also make almond flour with one )