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Posted 4/1/2011 8:08 PM (GMT 0)
Hi.

I have been sick for almost a year now without any definitive answers. I have just gone through a Colonoscopy and Endoscopy on February 21 and received my results. Mild inflammation in the above small intestine, ulcers on the ileum and a clean colon. The doctor does not think the ulcers are crohn's. He said I could possiblity have crohn's in 5 to 10 years or not at all with the size of the ulcers. I have gone through a ct scan that showed nothing,  a barium swallow 8 months ago that again showed normal, Normal blood tests, and my first colonsocopy in April of 2010 that showed the same as the last. I am now going to be sent for the capsule endsocopy in two weeks.

I have been having sporatic pains and diarrhea, and recently new symptoms. A feeling of narrowing of the small intestine. Well that is what it feels like. As soon as I eat I feel as if food is not travelling as fast as it should and I start belching up acid. There is a feeling of fullness and discomfort as someone is resting there hand against my abdomen above the tummy on a constant basis. I dont' want to eat, in fear of soiling myself at work, I'm scared food gets stuck and makes it worse.

I went to the ER last week with what I thought was the stomach flu. And was told by the first doctor since my white blood cell count was high it was the flu I returned 5 days later and saw another doctor who said that the flu should of been over with and prescribed prednisone. It somewhat helped. Not sure.

Has anyone had the capsule endoscopy?? Do you feel it going through you?? What are the possibilities of it getting stuck. My Gi said that if it gets stuck it might be a good thing because we will find out what the problem is.... I don't know if that is a good way to think or not.

Has anyone been in remission for a while with crohn's, I'm scared I will never feel better. Me and my husband have decided that I don't want to have kids...too scared at this point. This is really affecting my life.

Sorry for ranting.

Posted 4/1/2011 8:14 PM (GMT 0)
I had the capsule endoscopy a few months ago. I didn't feel it going through me, nor did I feel it exiting. I think there is something they can give you that's kind of like a test run for the capsule where if it gets stuck it'll just break down and dissolve, whereas with the actual capsule if it gets stuck you're in kind of a serious situation. I don't really know how they'd get it out without cutting you open. Maybe others will have more insight.
Posted 4/2/2011 10:38 PM (GMT 0)
Hi,

I am sorry to hear that you are in pain, hopefully it will get better soon. I have been with those kind of pains for a little more than a year, I went through endoscopy, colonoscopy and MIR but they didnt find anything. In the meanwhile I was feeling really bad, loosing weight and my life sucking, basically.

After "arguing" a lot with my GI, and with support from this group, I got my GI to give my the capsule test. Honestly, being an engineer I wanted to test and learn everything about that "piece of technology" but my experience was that you only swallow a pill (a little bit bigger that average, but nothing scary), and thats that. I didnt feel it going through my intestines (eventhoug I wanted to, in a way) and I didnt realize when it went out.

Anyway, the pillcam was the final test to confirm Crohn, after that they changed the non-working Prednisolone and Encort for what it was to me the "reall" stuff. Now I am on Humira and starting to enjoy life again. I am taking it very slowly, but after 16 months of lying on the coach and complaining about stomach pain, I have started going to the gym.

Hang in there, pillcam isnt painfull at all and might even be a definite help for you too. All the best luck.
Posted 4/2/2011 10:56 PM (GMT 0)
Gosh I keep reading over and over of what I feel or have felt. It is good to find this site. Same as you they have looked every where that they can.. and the pill cam is the next step. I go Wed to see Dr Gastro Guy with the blessing of Dr Hunkie Dunkie to get someone to do the cam test. Fingers Crossed that the insurance will want to pay for it. I hope you find out whats going on too. Sorry you have to suffer. I understand not eating and working I cant excuse myself from a customer and run off to the potty. Very frustrating trying to be normal.
Posted 4/3/2011 12:05 AM (GMT 0)
Thank you, it is good to know I am not alone.

But I am scared.
I am scared that I will never have a life anymore. Recently i have been feeling as I am only existing and not living.
Everyone is trying to tell me to have hope and that eventually things will get better, but I cannot see it.. Every post, blog and website are so unpleasant that I don't see any hope. I'm scared of all those medications and surgeries. I'm scared of needing a bag or even worse an IV for feeding from short bowel syndrome. I am scared I won't have a life anymore. Like others I have taken advantage of what life I had befoer and enjoyed myself without thinking of the future and now the future is all I think of and don't see a bright light anymore only darkness.
My husband is fantastic and if it wasn't for him I don't know where i'd be.

Does any of you feel that the doctors are lying to you when they give you the results and say that its not that bad and you will feel better? I know doctors are not gods but you'd think at this point they'd tell you the truth that crohn's is forever and you will keep getting worse.
Posted 4/3/2011 7:09 AM (GMT 0)
Wow your symptoms seem the closest to mine I have seen yet.
You probably don't have much to worry about if the CT scans you had showed no problems as for narrowing. It is a very slick and slippery capsule.
Posted 4/3/2011 7:27 AM (GMT 0)
Oh yeah, No you can't feel the thing moving through you, but you do need to check and see if it left the building wink

If it does turn out to be crohn's, try not to get hopeless right away.  Many of us still have our insides intact.  You need to keep in mind that if it is this DD, you didn't show up with it overnight so it would stand to reason you won't heal and get into remission that quick.  You will need to give it some time as the DRs figure out what meds will help you start feeling better.  It will take time, and you may actually feel a bit worse before you can get better.  It stinks I know.  But from the sound of it I am (or was) almost exactly where you are.  Which is more of an atypical crohn's.  And the rest of the battle is that no 2 people have this DD the same way and the treatment is even more individualized.

I know i said some of the same things over, but time and patience.  And maybe a bit of grief type counseling if you have trouble coming to grips with have to deal with something like this.

I know that there I days where I feel like the effing DD is defining me, and it is.  I used to take 1 pill (vitamin C) a day.  Now I take around 20 pills a day and remicade every 8 weeks.  I am finally starting to feel better, but it took more than a year on the meds to even get there.

I have heard more than one person curse the internet for the horror stories you have read.

If it does turn out to be crohn's, the sooner you accept it and try to get with whatever program (diet, meds, etc) the sooner you may start to feel better and achieve remission.

Here's to hoping thats not what it is.

Posted 4/3/2011 12:44 PM (GMT 0)
Hi Mdf34

You said my symptoms seem very similar to yours. What was the conclusion in the end. Where was the crohn's located? And you said that you are taking Remicade, are you now in remission?? What other medications are you presently on?
I am scared of the pill cam not to swallow it, but for the results and for it to get stuck, i know the Gi said if it does get stuck it might be a good thing because it will find the problem, for some reason the Gi doctor keeps telling me if it is crohn's i have a mild case and that he will beable to help me control it but at this point I am losing most my confidence in him. He cannot say for sure that it is mild until he finds it and you never know what the future will hold.

Thank's for hoping its not crohn's but at this point there is no other possibilities.
Posted 4/3/2011 1:09 PM (GMT 0)
I was where you are about 1 year ago. Feeling sick all the time,

I had every test and they were all inconclusive. One test said I had it and the next said 100% for sure I did not. It was the pill cam that gave me my dx. My doc says I have a 6 out of 10 case (with 10 being the worst)

For me all the test made me sick and put me in a flare.

It took about 6 to 8 months of changing drugs trying to figure that out and for me changing what I eat.

Now I feel great. I did a 60 mile bike ride yesterday for the first time in my life.

You need to know that many folks have very real issues, but this is not all folks. Lots take the meds and do what they can and go on with life, no worries.

I hope you do not have CD, but if you do, you will figure it out and you most likely will be like many and control it and get back to normal

Dave

Posted 4/3/2011 1:53 PM (GMT 0)
My blood test was negative, but I was informed only about 30% test positive for crohns.

I popped off about how it doesn't FEEL mild with the pain I was going through.  But in reality, I was never in the bathroom 10, 20 or more times a day.  Blood was only occasionally noticed, and mucous only at the end of a very bad episode.  I think lack of these symptoms constitutes the mild to moderated DX.

The colonoscopy showed sores mostly around the corner of the ileum in the small intestine.  When the treatment for UC didn't help, he looked further, did a CT, and ultrasound and finally the pillcam.  The pill cam showed many mild lesions.  He was pretty sure it was CD by the time he ordered the pillcam.

I am NOT in remission yet.  But he says he notices my color is better.  The frequency of my episodes has decreased.  We have already started cutting back some pills and if I make it a month with no mule kick to the gut pain episodes I will get to cut back on more pills.

You are at a stage where you NEED to know.  Having the answer, even bad, is better than not knowing what's going on.  I suspected none of this my first time to the GI.  My episodes were getting to be daily and I got a bit scared.

Posted 4/3/2011 3:27 PM (GMT 0)
Are you able to work with ad cramps?

I have only seen blood twice which they are thinking was because of my diverituculosis, mucus comes and goes but i was told this was normal and also can be related to when I was diagnosed with IBS 5 years ago. What i don't understand was for the past 5 years I had constipation problems and not diarrhea and no pain associated anywhere. Would I of been better off if they would of treated me for crohn's back then instead of IBS. ?? These are questions come to mind every now and then.

What are your symptoms now? Are they livable. ??

Sorry for so many questions but I'm so lost right now it makes things hard.

I read so many posts and see so many scary things. I'm terrified that the pill cam will show that my entire small intestine will be effected?? The doctor said that it is uncommon to have the small intestine infected compared to the ileum but not from what i've seen. And another doctor said because I am 31 i will not develop as many complications as others. But that is far to be seen.
Posted 4/3/2011 10:38 PM (GMT 0)
This is my GUESS and it is only that, so here goes.

Constipation is NOT uncommon for CD.  What puzzles me is one of your original statements made by a doctor that it is a possibility you would have CD in 5 to 10 years.  I have probably been dealing with it since my early 20's but it was so sporadic I didn't think I had any real problem and of course by the time I got to a doctor I would feel better and the symptoms passed.

My understanding is if you have any chancher sores, lesions or spots of inflammation in your small intestine it would be crohns by definition.

Yes I still work.  I still have a relatively normal life.  But on bad days I am forced to face my limitations and take it easy.  I immediately switch to my safest of safe foods.

Which is something you need to figure out.  Food did not cause the problem but it WILL exacerbate it.  Keep a food diary to help you figure out the problems.  MY GUESS is that if you at this state you are more scared than actually damaged inside.

Posted 4/4/2011 1:35 AM (GMT 0)
I understand what you mean about the sores in my Ileum. I have seen two Gi doctors in the past year who have said the same thing that the ulcers are two small to be crohn's and said that I might never have it there. But he wants to do a capsule endoscopy to see if there are anything hiding above.

I know food did not cause this, i eat rather healthy but not now i am scared to eat and don't know what to eat. I did keep a food diarrhea until my current GI told me to discard it because it really doesn't matter. And for me its true, foods don't really cause a difference. I can eat bland bland foods and low residue and have the same feelings as if I am eating greasy greasy food. But to be honest I havne't had greasy food in a long time now and would love to have some but won't .

Question for you. what are the foods that bother you. Is popcorn one of them??

Thanks.

And yes i am scared. I had plans for the future. I finally became permanent at my job after such hard work took me 3 years. and now I am faced with uncertainty. I know I will have a good disability program but that is not somethign I want.
Posted 4/4/2011 3:01 AM (GMT 0)
Believe it or not, eating "healthy" is probably not an option right now.  At least in the traditional sense of the words.  The food diary is only for you and family to keep track of what bothers you.  If something hurts me that bad, I don't usually eat it again.

Yep, popcorn has been a big huge OMG no no for years.  For now, I have no fresh veggies or fruits. No extra fiber, no whole grains, no nuts, no onions and a few other things, but that's just me.

One thing to keep in mind that may really help you, eat much smaller quantities more often.  If you have the inflammation throughout your small intestine it will take some time to heal and actually start to feel better.  Probably a month to really start to notice.

I never realized that the size of the sores was a factor in the DX.

You won't have to face disability until you have tried and found the rght treatment for me.  As bad as it hurts, and I do have an idea, it may not be as bad inside as you think it is. 

I may whine and complain when having a bad day, it may even keep me home when I had plans.  But plans change.  And I am still scared at times as I am still learning to deal with it.  But so many others here have shown courage in the face of this diversity it helps me know that I can deal with it to.

My thought is this (and is in no way a medical recommendation), do the test so you can get your answers so that you CAN move on and figure out what to do and how to deal with it. smilewinkgrin

Posted 4/4/2011 10:47 AM (GMT 0)
Right now, I find the worse is at bight and in the morning. At night I get these rumblings and gurglings in my tummy that keep me up all night and continues in the morning until all what's in me gets completely excreted. Even my stools look so slushy it's not even funny I don't honk I've had a normal bowel movement in over a month or more.
As for fibre. I really haven't had much lately except metamucil these past two nights to see if it helps or not. Haven't had any major pains from in. My gi said to try and see how I feel some can tolerate while others can't same as popcorn and other foods. Even my family do for has told me that based on all my tests so far If I have it I should not have it bad enough to restrict my diet too too much just be careful. As for a food diarrhea I don't think it matters at this point I've been earingthr same kinds of food over and over again for the past few weeks. Chicken rice patatoes cooked carrots salmon chicken sandwiches and that's about it.
Have you eve had any accidents at work or at night??

As for the wise of the ulcers that is what my doctor said. I am actually curious on how far ip my ileum he got to visualize with th scope and if he can see more of it with the capsule.
By the way thank you. And where is your crohns located in your small intestine and how bad is it ???
Posted 4/4/2011 11:48 AM (GMT 0)
I have ulcers throughout, but not bad.  It just hurts soooo bad sometimes.

NO ACCIDENTS YET! Fingers crossed, but I can tell I am finally getting better.  It has not been as instantaneous for me on remicade as some others.  If I am going to have an episode the pain wakes me from a dead sleep, so it's not something I can sleep through to have an accident.  The only way I think I would have one is if I can't get to bathroom in a timely manner.  I have made it my whole commute with no accidents (45-60 minutes each way) but barely manage to get in the door.  There was a time or 2 it was literally crawl through the door. 

You may just want to follow the BRAT diet for now followed up with some BOOST or ENSURE until you get some answers to keep your pain down.

I do as little fiber as possible.  Popcorn actually has me saying crap like "just shoot me in the head and get it over with so I don't have to suffer any more" because the pain is so bad.  I could be a big wuss since I have no idea what giving birth is like for pain.  But it is the worst pains I have ever felt in my life, no lie.

And you are more than welcome, it's what we are all here for.

Posted 4/4/2011 2:23 PM (GMT 0)
Oddly enough I have more rumblings and gurglings and strange feelings. Like I have little aliens running through my intestines. The only pain I really have is on the right quandrant and of the left of the bellybutton. But for me its mostly the diarrhea and the feeling of fullness and blockage above the belly button in the upper abdomen and complete discomfort. The feeling is so awful it prevents me from eating and also I'm so scared to have an accident at work I don't want to eat. So far I've been lucky I don't run to the bathroom a whole lot except in the morning but I don't eat much as well so that my contribute to things as well.
I am truelly confused about the ulcer part as well. I have been through 3 Gastroenterologists so far, the first said it was crohn's, but he wasnt a sociable person and I needed that in a doctor, so my family doctor found me another someone I could talk to, this doctor did not think it was crohn's and prescribed many ibs meds that would not work or it could of been because i didnt think they would work. (mine over matter). The second doctor wanted me to have the capsule endoscopy done but could not do it at that hospital so referred me to another doctor out of town who could.This is the doctor I am at now. This doctor did a colonoscopy and a endoscopy first to see for himself, and now i have the capsule test next Tuesday. He gave me the pathology test resutls from the colonsocopy which I wish he wouldnt of, I keep reading it and trying to understand it. The biopsy of the terminal ileum reads. Diferential diagnosis required from infectioust to early inflammatory bowel disease, clincial correlation is recommended. So to me that reads I have it, but I'm not a doctor and no granulaumo's(sp?) were found, but not everyone who has crohn's has granulaumo's.(sp?)

I'm just getting fustrated and feel like I'm getting no help from the doctors. One doctor says one thing and another says somethign different and this doctor is suppose to be one of the better ones in our area so why doesn't he see it.
GRRR.
Posted 4/4/2011 3:02 PM (GMT 0)
I don't have all the answers for you, but I can tell you that in my most recent colonoscopy, my GI was able to get about 18cc beyond the terminal ileum (or where it would be if I hadn't had resection surgery). In an endoscopy they can get just past duodenum (I think), so there is still a huge amount of small intestine that can not be visualized with either of these tests. A pill cam can see the entire length of the small intestine. There is also a Small Bowel Follow Through, and CT, as well as other tests that can be done. One other option is to ask your doctor to try you on some Crohn's medication and see if you respond. If you have doctors who can't agree on a diagnosis, that might be the way you finally get a diagnosis. I know there are some members who have had to resort to that route.
Posted 4/4/2011 3:26 PM (GMT 0)
I am coming out of remission. I was living life pretty normal for the past 5-6 years. I could even eat popcorn - and I didn't diet, didn't worry about gaining weight. I didn't take anything for granted. Now that it's coming back though, I know it'll be a pain (literally for a while) but once again, I'm positive I can go back into remission. The thing is that while the life you had before CD was "normal," you learn to have a new "normal." For me, even in remission, I lived with a few stomach pains and cramps and the dreaded stomach noises that inevitably only happened on a date or when someone said, "Let's pray." It all becomes your new "normal" and you get used to it. The thing is, if you let it get you down, you will. If you decide you are going to find a way to do the things you want, like having a baby, then do it. I now am married (just over 3 weeks now). I had 2 children before CD, had one after CD, and now have 4 step-children. I refuse to let the disease determine my life and I think that everyone with a good outlook does better.

Sometimes reading and checking forums too often can make you crazy!! It's like how when I was pregnant and everyone would give me their horror stories - telling me how they'd been in labor for 74 hours and crap. Well, I was scared to death! Then my whole labor and delivery of my 1st was a total of 4 hours. With my third, I was holding my little one within 45 mins! But the thing is, people who have easier times don't seem to speak up as loudly or don't share because they don't have as interesting a story to share. And so with CD, when you feel better or go into remission, you don't check the forums as often and you don't tell your story as much. So what you may read is only a part of the life of someone with CD. So just know that there are people living lives on a daily basis who have kids, jobs, hobbies, and they just happen to have Crohn's. That's the way you need to look at it if it's what you have.

Now don't get me wrong, forums are wonderful!!! Sometimes, when you are new, you see the bad and the scary. We're used to it and forget that all this can be overwhelming to others. But we can live our lives normally (just may be our own version of normal). It's just that those who don't have CD, have no clue the fears, the craziness and the funny things that happen to us on a daily basis. It's wonderful to be able to express all those to people who truly can empathize and not just sympathize. Plus, we can complain to each other an don't have to dump it all on our families and friends all the time. :)

Hang in there and keep us posted.
Posted 4/4/2011 4:25 PM (GMT 0)
I find alot of my problems is trying to understand the condition. From the things I read to the things my doctor says. Its hard to differentiate from 1 another.
Every where I read it states what not to eat but my gastroenterologist basically says that food is not a culprit and should not matter. He suggests eating some greasy foods from to time because it is good for the moral to have something yummy. He says I shouldnt worry so much about what to eat because it won't make a big difference but if I come accross something that hurts me then I will know it is not for me. But so far I have not came accross anything like that. Everything i eat seems to do the same thing. But everyone is different as I have read so far. I started metamucil again these past few days and the D has calmed down abit not so watery, but now there is a bit more pain in the ileum. So unsure if it was worth it or not.

Yes I agree reading on the internet has driven me crazy, somedays I wish I never would of done so. I know i wanted to learn but I don't think I was prepared for what i found out.

Just to think the pill cam is next week then another 3 to 4 weeks waiting on resulst.s

Thanks everyone for writing. I am find this really tough and hope to get some answers.
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