My story with the disease (long sorry)

my story with the disease (long sorry)

hello everyone, im new to the site but not very new to being "sick"

about 3 years ago i started to get very very bad vertigo i had to quit my job because i couldnt drive... i couldnt really do anything. then other symptoms started to happen.. joint pain EXTREME fatigue arms and legs feeling all tingly flu like symptoms. im sure there are symptoms im missing its been a long 3 years of feeling crappy that its become kind of normal. after 2 years of spending my life in numerous dr offices countless tests and 75k later i was "diagnosed" with crohns. ive been a "sick" kid my whole life (well im 23 i guess im not a kid anymore) i was born 2.5 months early so my immune system has always been a pain.

now the thing i still dont understand about my "crohns" is i have NEVER had diarrhea.. infact i pass a bowl movement 1 time i week if i am lucky and since being sick i have GAINED about 20 pounds. my colonoscopy came back clean but i guess where i have trouble is my small intestine where the colonoscopy cant reach... so i did a pill cam that showed cherry red, inflamed areas...

i also just got my breast implants taken out 3 weeks ago as all of my drs agreed they were aiding in making me sick (basically pissing off a already pissed off immune system) so now i am dealing with recovering from that.

im just wondering if my symptoms are normal as everything i have read is diarrhea this diarrhea that. i basically get a very hard spot on the right side of my stomach... i get very tires.. dizzy... headache.. legs cramp.. and the worst darn ANXIETY EVER

i did the food panel test and i have about 30 foods i should stay away from (greeeat) my dr gave me pentasa but im kind of anti medicine so i took it for like 2 weeks.

i would greatly appreciate if someone can let me know if what i have is normal for crohns.. without the positive biopsy and "normal" crohns symptoms i feel like i dont even have the disease!

Hmm, Never seen someone with Crohns with these symptoms but it is always different, so maybe because its only in the small intestine is why the symptoms are different then normal. I hope someone else could explain further.

Welcome to the forums though! Oh and that sucks that you needed to have your breast implants removed....those are always nice....haha jk....errr....

my GI insists its crohns that i just have systematic crohns and not the normal crohns. ugh!

The only thing I had in common was I was very tired and dizzy when I was first diagnosed. So maybe....but im no doctor

yea it sucks.... the only thing that showed inflammation was the pill cam.

Coley welcome to the forum, glad you are here. :ybiggrin:

There really isnt any SET rules or symptoms of Crohn's. We are like snowflakes, no two are exactly alike. Alot of people constipate too , what a normal or healthy bowel does it bm once a day. We crohnies can have massive diahreah or mildly, some don't have a bowel for a week.. Being constipated to me is more worrysome for me, others have so much diahread they want to stop. Constipation can be a sluggish bowel or can be heading for a stricture. MY sister has CD and UC and bleeds, but no pain and I am the opposite. Some foods, like sugar and dairy cause pain for some and others not. This disease requires a lot of trial and error. Diets are the total answer. Proper nutrition is idea for everyone but not all people can get it by salads, or some fruits. My body doesnt like medicines so I have to rotate. Others are on Remicade for year,some are allergic.

I am sure you know most of what I am saying, but we all know there is no cure, or enough awareness. Side effects of the disease itself is tough to deal with.

Biopsies can say their are normal and really crohns is present. Tricky disease to say the least...gonna stop rambling now , so welcome aboard. Ask any questions or just join in!:ysmile:

jetta,
thank you for the reply! i think its super frustrating for me because every time i read anything about crohns im like... well... that doesnt sound like me at all! i suffer from these headaches and body achs and fatigue.. its basically like i have the flu all the time... and when i try to search nothing for the typical internet crohns symptoms relates to me... im wondering if i should try and take the pentasa seriously... but 8 pills a day? NO FUN

YOU have to take what your body needs. What ever gets you through a flare! Cute Avatar btw!!! What country are you from?

aw thank you im from arizona, usa!

is it possible to have a normal colonoscopy but still have the disease?

Yep, there is, been there done that 3 times!

i think i am sort of thankfull that i have the symptoms i have... i cant imagine living on the "potty"... my grandmother has UC so i guess that does up my chances that i did get diagnosed properly

Hi Coley, after reading many threads on here, I've seen all your symptoms mentioned. I wouldn't advise you for or against the meds, but EJ takes Asacol, which thanks to Rebecca 85, I now know is the same med as the pentasa just made to release at a different point in his system. He has never shown any ill effects from taking it if that helps. Good luck and welcome!!

it brings peace of mind that my symptoms are completely odd.. i was getting a little worried

Hi Coley and welcome. I can completely understand where you are coming from. I tend to go one extreme to the other, and at the same time. I can have 6-8 BM's a day, or go a day or 2 with nothing. I've been dealing with a flare since April, and last week I sat on the potty and started with a hard stool and ended with liquid. Went 2 or 3 more times with in an hour and then didn't go again until the next day. I refuse to take anything for either symptom, because then I go way to the other extreme, so I just have to ride it out.

I also have never lost weight. I'm actually 30 pounds overweight and would like to lose some. You would think not eating for 3 months would help, but it hasn't. Still confused on that one.

I took Pentasa for 3 years and never had a problem with it. I think that was one thing that kept me in remission. I'm currently taking the 8 pills aday along with prednisone and Remicade, but conditioning is worse. The main thing is finding a doctor you trust and be pro-active. And don't believe everything you read on the internet :lol:

Good luck and keep us posted.

misb,
i think the hardest thing for me to get past was i never use the bathroom and that seems to be like biggest most common symptom of crohns.. so i kept thinking hmmm i MUST have a wrong diagnosis!! i guess i will try the pentasa again.. im sure it cant hurt anything:tongue:

Coley, I know how you feel. I have a "Mild" case of crohn's (though it certainly doesn't feel mild) and I go only once a day, maybe twice at the most. I've been taking pentasa and it's a pretty safe drug. Just don't take it on an empty stomach or with pred!

Hey Coley, the hard spot on the right side of your stomach may very well be normal. I remember having the same sensation (it feels like a muscle XD) and when you pressed it, it felt hollow. I had the camera pill test too, and it got stuck in my small intestine in that same lower right area. Eventually I got operated and they removed some of my small intestine; it was badly inflamed on the right side and the pill cam got stuck at the Ileum, (which is basically the junction between the colon and small intestine; again on your right side). So it might feel hard (not necessarily hurt) due to blockage in that area because the junction twists and contorts a lot. Another thing worth mentioning is that they also removed my appendix while they were in there (I am not sure the appendix was really contributing to the pain however, but it's in that area once again).

I hope I helped a bit. I remember having that hard spot on the right; it's the junction of the colon and small intestine, and my colonoscopy couldn't get through it either. And of course, that's exactly where I had bad swelling.

They likely used the pill cam after not being able to get through to the small intestine right? But what did they say about the small intestine after seeing the pictures from the cam?

"my colonoscopy came back clean but i guess where i have trouble is my small intestine where the colonoscopy cant reach... so i did a pill cam that showed cherry red, inflamed areas"

Forget the last thing I said, your affected area is exactly the same as mine. What did the doctors say about that particular area?

Hi coley and :welcome:

As others have mentioned, everyone is so different due to the varying combination of symptoms.

I know what you mean about the diarrhoea aspect of things but you are not alone there. Roo never had diarrhoea in the lead up to her diagnosis and she also suffered with headaches and joint pain. So as you see, many of your symptoms but not all and you have some she didn't but others have. She also has ileal Crohn's.

About the tests. Roo never had a colonoscopy but with all the tests she did have they all came back normal. She was only diagnosed because she required surgery. So just another confusing aspect, at times, to this disease, normal test results even though you have active disease.

Good to see you here and welcome aboard.

Hi dleblanc and a warm :welcome: to you also.

Glad you found us. Would you like to post your own story so we can all get to know you and welcome you to the forum.

All the best to you both and take care,
Dusty

Watery diarrhoea is caused by there being too much water in your stool. In Crohn's, this is usually because the area responsible for removing the water from your stool is inflamed. The terminal ileum plays a small part, but most of the water is removed in the colon. So anyone with colitis is almost guaranteed to suffer with d. I have terminal ileum inflammation, and have soft stools with d if I eat something I shouldn't. Those of you with small bowel involvement are much less likely to get d. It's just that the colon and terminal ileum account for something like 90% of Crohn's patients.

If your small bowel has been inflamed for a few years, it will not have been absorbing nutrients efficiently. You have probably been eating more, or your body has slowed its metabolism to compensate for less nutrients. If you took meds for a while, your inflamation could have lessened, allowing your body to absorb more calories, leading to weight gain.

Hope that clears up a few things for you!

Hello Coley, Welcome, I am also a new member. This is a great forum with great people. Although I don't have Crohn's or UC. My 16 year old daughter Meg does and has been recently diagnoised. She has NEVER had diarrhea. She had ongoing tummy ache for about a month. She had her inflamed appendix removed at Easter but the pains continued and then vomiting started. After a colonoscopy and barium meal and follow through: crohn's was found in the small bowel only, with a 2mm stricture. She also was very pale and completely exausted. (Due to crohn's related anemia)

dleblanc said:

"my colonoscopy came back clean but i guess where i have trouble is my small intestine where the colonoscopy cant reach... so i did a pill cam that showed cherry red, inflamed areas"

Forget the last thing I said, your affected area is exactly the same as mine. What did the doctors say about that particular area?

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Hi dleblanc, welcome to the forum! Glad you treaded here and found us. Perhaps you could post your own story on a YOUR STORY thread, so everyone can meet and greet you. Great people here!:smile:

coley said:

misb,
i think the hardest thing for me to get past was i never use the bathroom and that seems to be like biggest most common symptom of crohns.. so i kept thinking hmmm i MUST have a wrong diagnosis!! i guess i will try the pentasa again.. im sure it cant hurt anything:tongue:

Click to expand...

Hello Coley
I have typically not responded well to meds but with a recent flair up the docs put me on Prednisone (hate it) and pentasa. The prednisone works wonders for me initially but the long term it brings side effects I can't stand! This is the first time I have been on pentasa and it seems to be working quite well. My next appointment they are going to decide whether to give it a go with Remicade.
So not to be one to give advice I will say this, I have more often than not done better by listening to the doctors suggestions.
Hope today finds you well and that you get this sorted out for yourself.