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Hi everyone---i'm kind of new to this...

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xrayzerase

Guest
hi everyone---i'm kind of new to this...

hi-i'm andrea-i'm 43-and was diagnosed with mild crohn's on august 24 06. ..so-i guess i am still kind of processing this new information..
i have been to a gastroenerologist over the past months-(and once about 6 years ago-for frequent diarrhea)
i had a colonoscopy about 7 years ago because my dad had colon cancer-(he is ok now-had surgery) and the results just said i had evidence of scarring/ adhesions from a myomectomy (surgery to remove fibroids in uterus) a year before this.
for many years i thought my diarrhea was due to having had such large fibroids and then the surgery. my doctors also thought i might have ibs.
4 years ago i had shingles (just a small area of sores along the nerve from my left eye to my scalp)-and at the same time a virus that made my saliva glands swollen-as well as the gland under my left ear.
a few months ago i went to the gastro because of chronic heartburn-it seemed to be at its worst just before i made a stool or whatever--but-was/is bad all the time.
i went on prevaid-it helped for a short time-but then it started up again despite the med-as well as diarrhea becoming more frequent and often watery. my stools were almost always yellow. i didn't lose weight though-..i am pretty much average weight in general..)
i tried nexium-had diarrhea (it seemed ..due to taking it...but now i wonder..) i also tried prilosec(cheaper--but didn't work at all) as well as zantac (also didn't work)
then about 3 weeks ago (or something like that) the heartburn became "very" bad-(no nausea or vomiting--lucky in that way..)and the diarrhea was also even more frequent-and always watery. i had some ab pain-but-i almost have gotten to where i "ignored" that..but-i did have one episode -after going out to lunch one day-where i had what seemed like strong gas pain-but in the stomach area.
so-all this-i went to the gastro my gyn goes to. i was in not even 5 days later for a colonoscopy and an endoscope.
(colonoscopy prep is so horrible..i'm sure everyone here knows...i used the pills instead of the gallon drink--which was better-but-still-the worst prep ever..)
at any rate-i was then diagnosed with mild crohn's -(ileum)
he put me on pentasa (500mg 4 pills 2x day). i had a low grade fever for 3 days..and worried my body wasn't taking to the new med--but-yesterday and today-no fever.
today-in the morning and part of the afternoon-i was actually feeling a bit better--but-this evening (not sure if it was the baked potato with some butter)but-i now have semi-bad heartburn and have been having to go (stools) ..maybe 5 times since eating at about 630 or 7. (it is now 930) also-have anal burning (probably from going a lot today-especially this evening).
i also feel very tired and some ab discomfort.
since the pentasa-i have only had diarrhea one day..the rest-today included-well-formed and brown (man..this is all so gross!..sorry..gotta get the hang of this..!!) the stool has tiny yellow dots scattered through it each time--so-maybe thats from the pentasa..?
i think i will be starting the entocort tuesday. my dr mentioned that (but first see if i can "take" the pentasa. i was going to see if i could talk him out of the entocort..but now..i am beginning to think i may need it. i just feel crappy..so-guess it is the inflammation (?)--which needs to be dealt with...
so..thats my story..
sorry so long.
i'm just worried that since the burning is still there (tho-i was diagnosed to have mild gastritis as well-and am on aciphex for a month)-but..the frequent bowel movements and ab discomfort..make me think maybe i do need the entocort...:(
i realiaze i need to learn many things...especially about diet. i am not the healiest eater..i eat good stuff..but also eat junk..and i love icecream and pizza-the thought of....oh..well.
i am almost afraid to east now..after tonite-and the zillions of stools and burning...just after eating one potato...yeah..lots to learn..
oddly: ambien seems to help w the burning at night--takes the edge off--maybe that is because i am getting sleepy,,who knows?
does anyone here (esp those who have chronic bad heartburn)take pain relievers (besides tylenol) (like maybe codeine)?
i want to get to read many other stories here tomorrow-i think i am too nutty about it all right now however..and hopefully now can do some regular work.
that's the hardest thing right now--this feeling bad takes all my time-havent been working for a week now-and --i am losing it--well-not really-don't feel well enough to care really. right now-i guess all i can think about is this crohn's.....
anyway..i am glad to be here-and i hope to read/talk with others here who are going through this-at any stage--it is all crohn's....
thanks for reading such a long ramble ;)
andrea
 
Welcome to the forum.

When you said you felt bad after eating the potatoe with butter did you use a lot because you could be lactose intolerant. Do you always feel bad after eating/drinking milk products.

Hope you feel better soon

Jeff
 

mikeyarmo

Co-Founder
Welcome to the forum!

This will take some getting used to, but you soon will be more knowledgable about what works and doesn't work for you (diet-wise) and will be describing your bowel movements with the greatest eloquent and descriptive terms :D.

I am on Pentasa myself, but I do not know what the yellow dots could be. Write down that this happened and speak with your doc/Gastroenterologist about it.

For now I really recommend keeping a food diary. I would right in it EVERYTHING you eat and drink, and then also comment at times how you are feeling (and some good information about your bowel movements :)... size, colour, frequency, consistency... all the good stuff!). This may help determine what foods are triggering the unwanted symptoms in you. Avoiding them will make you feel better.

While it is easy to say "Eat better", it is harder to actually do. I think in time you will learn what is good and not good for you (as in what you can and cannot tolerate), but any effort to eat healthy is good. Eating is important though, so keeping a food diary can help determine safe foods you can eat if you are worried about having bad symptoms.

Entecort is fairly mild, so hopefully it works for you and helps. I was on it for several months with no major problems.

Good luck and please ask any questions you may have.
 
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xrayzerase

Guest
hi jeff
thanks for that..
i am not sure if i am lactose intolerant...i am finally starting to pay more attention to what foods do what though..
til this-i have to admit-i was not the best when it comes to doing healthy things for myself.. (i'm in ok shape and all...but-love things like some junk foods and coffee...)
thank you for the welcome :)
andrea
 
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xrayzerase

Guest
michael
thank you so much :)
i see my gastro in about 2 weeks-so i'll mention the yellow dots....it is so much fun describing and analyzing poop isn't it!?
your suggestion of keeping a diary is great..and i am trying my best to keep at it.
when i have my good moments of not feeling too bad..it is so easy to go into denial about this whole thing...that is til it is time for the zillion pills-then i remember..oh yeah..i guess there's a reason i'm doing this!
thanks mainly for the info on entecort...i am starting it tomorrow and am a bit nervous about it-especially after getting off it...
i guess like everyone here: i just want to get back to normal and not think about this..
oh well..
i guess as long as there are "good" hours..and humour-that's a big thing.
need to be silly too :)
thanks again
andrea
 

Kev

Senior Member
hey andrea...

welcome to the forum... Forget the ettiquette about what can/can't be discussed in polite company... you'll get more out of this site once you're comfortable with the most frequent topics of conversation... Couple of things.. from your history it could be that this has been building for a while... Your acidic stomach issues seem
to mirror what I went thru last year... Tried all the drugs/treatments you named.. pretty much the same results... since I've been on a low fat, low fibre high protein diet, that part has pretty much petered out. Have you told your doctors about the yellow in your stool? If not, do so immediately... it could be meds, it could be fat, it could be bile of some kind... You need to get it checked ASAP. You might also get your doc to check the fat absorption of your stool.. It's an unpleasnt
test... not painful or anything... just a bit gross & embarrassing, but worth it, OK? You also may want to limit your intake of fat, fibre and lactose until a doc (GI) says
otherwise... The baked potatoe with skin & butter/margarine contains all of the above items to avoid... I'm not a doctor, nor an expert, but if I were in your shoes
I'd try these things... MORE of a better be safe than be sorry scenario until the Dr says otherwise... Just that I've read that Crohs can affect gall ducts, gall bladder,
pancreas & liver... Also know that one of the warning signs of liver involvement is yellow jaundice.. (typically can be seen early by examining the eyes).. If the gall ducts are inflamed, then the gall (bile from pancreas & liver) get's backed up ELSE it floods the intestines... also throws off the regulation of acid in the stomach.. I never knew this until it happened to me... So I'm personally familiar with many of the symptoms you mentioned... Not saying that what caused it in me is going on with you... THAT's a call for your doc's to make... When's the last time they did any bloodwork on you? Checking pancreas enzyme levels, all that other good stuff? HEY, I don't want to fill you with dread or bad thoughts... I got thru all my complications... if you have them too it is best to find out as soon as possible. OK Just an FYI... Are you telling your GI ALL of your symptoms? No matter how far out in left field they may seem to you? Keep a diary of what you eat, and another of all your symtoms, including day by day #s on how many times you got to go. I used to rate my days as 1 - 6 times = great day, 6 - 18 times as a typical day, 20+ as a bad day... Some doc's just don't get it that it isn't nice to spend 6 hours day in the john, or 20+ hours a day wracked with pain... have to sort of remind them.. Anyway, (and you thought you rambled on - you've a lot to learn newbie) welcome
to the forum... Stay on top of this, make your dr. work for their money, and TTFN
 
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xrayzerase

Guest
kev
thanks very much
your reply has already been helpful in the sense of what to ask my dr (i go in on the 21st) i will ask about bloodtests and the stool test. i am hoping this isn't including my liver/gall bladder or pancreas (bile things) -but-i have n=been already wondering about that anyway..but-it is good to know (well..bad also-as who wants to know others have this probelm too) but good in the respect that you have found things that help-and things that make things worse..and so-i am glad to hear about anything to get this mess where one can at least feel a little "ok" during the day and night.
i still have the heartburn-it is less horrible right now..but-early afternoon and evening -and after meals-or even just a bite of something-it gets worse. the achipex may or may not help-the pentasa helping with my stools being less "D" may help with the heartburn..so-hard to say what does what. i probably will have to take the dumb entocort though..as this am i had a loose stool (not watery D -but-it was very loose-and had more yellow in it (since the pentasa-my stool has been brown with yellow specks (maybe the drug -how it comes out?--need to ask dr) -but-i wasn't happy seeing the yellow again-and that it was loose. i tend to make about 5-10 stools a day since the pentasa. before that-it was watery yellow D and-i'm not sure how often..but it was progressively getting worse..(which is why i had the colonoscopy as well as the endoscope thing)
so-i will definitely ask about the bloodtest/stool test. and about bile etc..
i am very happy with my dr..but..i guess since this diagnosisi is so new..i am overwhelmed with what to ask him and what to tell him. i am now keeping a diary of food and stools etc. fun fun. but i know i have to do it...boo hiss to crohn's.
i'll just be glad to find/get some sort of remission going..and hopefully able to focus on getting back to "normal" soon...
thanks very much for telling me about what you've been through..i have to read more about this..as i am pretty sure the heartburn is realted to the crohn's-meaning..possibly a bile thing...and-so-need to check -and be more thorough with info i tell my dr..
~andrea
 
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ElaineH

Guest
Hi andrea and welcome to the forum!

It might be worth getting your gall bladder checked out, people with CD are more prone to gallstones.. I had my gallbladder removed a year ago. Before that I suffered on and off for 5 years with what felt like chronic heartburn, very very painful and seemed to be brought on after eating fatty food.

Good luck and look forward to seeing you around the site!

Elaine xx
 
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Valentina

Guest
HI Andrea, welcome to the site. hope you find it a useful place, its always good to hear what others do/have been through. its helped me a lot in the past. hope you get the heartburn thing settled a bit, I cant imagine going through that all the time, very painful stuff.
 

Kev

Senior Member
Andrea.. I didn't want to alarm you or anything... The symptoms you described are common for a lot of things... It could be your meds, it could be anything else.
Just that inflamation of the bile ducts (proper name) does occur with colitis. I do not know how common or rare it is... See a doctor, and be sure to tell him/her all of your symptoms... And keep a diary of what you told the doc and when, in case.
 

Cara Fusinato

Sarcastic Forum Comedian
Welcome, Andrea. Make sure to ask your doctor (or pharmacist) what each med. is supposed to do for you, and what side effects are common --not the whacked out ones they always mention on TV, but the normal ones. Pentasa is a common anti-inflammatory and is something for long term. Enticort is a steroid and should be a short-term thing for flare-ups, though many people take it longer. I wanted to kill people after taking Enticort for 6 days. Then there are several immune suppressants. They are meant to help your body's immune system stop going after itself. Oh, and probiotics are good bacteria meant to overwhelm the bad bacteria that causes the immune system response. I found some fascinating research out of Australia outlining how Crohn's seems to be like this: you get hit by bacteria (milk, mountain water, certain illnesses, etc.) and then a certain portion of the population genetically (that's why most of us have a relative somewhere with it) has the immune system go wacky over the bacteria and start attacking itself. Now, the results differ (fistula, ulcerative colitis, strictures, etc.) but the commonality is the wacky immune system. And the bathroom visits. Get to feel comfortable asking the GI Doc. all the details. The more you know, the more you can take care of yourself and not be scared out of your mind (been there myself) or depressed about the "why me" of it all. Welcome and feel free to ask us all anything. There's a lot of expertise in this area of the web.
 
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devildee(donna2005)LOL

Guest
Hi Andrea

:welcome: look forward to resding you posts ((hugs))
 
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xrayzerase

Guest
elaine-thank you for the welcome :)
i will definitely be more thorough with my dr next time i go in (the 21st)..and see what needs to be done (tests)..so far-taking the aciphex at noon instead of 7 am seems a bit better-(as far as night being worse) and-the entocort may be helping too (today i had some heartburn-yesterday-close to none..which is very new....so..not sure what helped..but-tomato soup -just campbells-with ritz crackers..might have stirred it up today..not sure..)
sorry to ramble..
nights are hardest..and i just started the entocort-so..it is a bit scary..
thanks again
:)
andrea
 
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xrayzerase

Guest
valentina
thank you so much for the welcome :)
being here has already helped :)
andrea
 
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xrayzerase

Guest
kev
thanks
oh..i know,..i'm trying to to over react or get too alarmed--i guess i am just still new to all this..especially (right now) these meds..
 
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xrayzerase

Guest
cara
thank you :)
yes.. scary.
i am glad to be part of things here though..
 
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