Scared and no where to turn

Hi everyone.

As my title states I'm scared and really don't know what to do.

Hear is my story.

In april of 2010 I had severe left sided pain that caused me to bend over in two, which followed by diarrhea and blood.
Was sent to see a GI doctor and was told he thought it was diverticulosis. Went for a colonosocopy shortly afterwards and was told he found ulcers in the ileum and prescribed pentasa, shortly after pains and diarrhea started, went back and he prescribed entocort. At that time it was decided i needed another Gi doctor, I could not talk to him he was too pressed for time. He didn't let me ask any questions and said I was too nervous and go and ask my family doctor for ativan.
Well my family doctor decided it was time for a referral, we found another doctor about 45 minutes from home and started seeing him. This doctor was nice and let me talk.. Only thing he wasn't convinced I had crohn's, he thought it was more IBS than crohn's, he sent me for numerous blood tests and a CT scan, which all came back inconclusive. He reviewed the barium swallow and colonoscopy video taken from the previous doctor and still said it was inconclusive. The only thing that came back positive was for diverticulosis. Shortly afterwards more diarrhea started after finishing the entocort that the previous doctor had prescribed and more blood. Second doctor still was unsure and decided it was time for another opinion and a capsule endoscopy test. So he referred me to another specialist 2 hours a way that specializes in the pill cam.
First visit with the third specialist was December 21 and he didn't say much. He basically said too many tests came back inconclusive and decided he wanted to do some of his own. No surprise there. Went in for a second colonoscopy and upper endoscopy in February. Went back to see him he said there was mild inflammation but nothing conclusive. On April 12 had the pill cam done, while I was at the hospital he came to see me and said that he thought it was early crohn's (don't know what changed his mind). Now I have my next follow up tomorrow at 3:40 and I'm terrified about what he is about to tell me.

Now to explain my symptoms. I vary from day to day, some days I have sharp intense right lower sided pain, and diarrhea of all colors. But lately I have been having pressure and tightness on my left upper quadrant and accross my upper abdomen above my belly button. I have lost 45 pounds in a year, my hair is falling out. I'm constantly tired, no appetite, nauseous at times, dizzy. And the gurglings don't get me started I feel as if I have aliens running through my intestines all the time. I can even move the wrong way and have the gurglings follow the pattern of the movement. Pains can be anywhere and I've noticed that I get sharp pains anywhere from time to time. I have been basically on a liquid diet since Monday. Really it doesn't matter what I eat I feel the same way with each food.

I'm really scared that I will have no life and that things are never going to get better. There are people out there who try to tell me that things will eventually get better with treatments, but to be honest I think i've given up hope. Its been too long, too many clothing sizes, too many nights of crying.
I'm so frightened of waht my life will hold for me now. I have a great husband and two little demon puppies (shitzus). I have a great job which I keep missing work now because of this.. I've read so much stuff and i'm really terrifed at what my life will hold. Right now I basically feel like I am dying.

I don't even want to think about what he could posibly tell me tomorrow. I'm terrifed he might tell me I need remicade or surgery or that he can't help me.

How do you all do this.??????????????????????

Does any of you have pains in the upper area and have only ilietis.

I'm so sorry to hear your story. It brings back lots of memories for me (I was mis-diagnosed with diverticulitis instead of diverticulosis, but otherwise pretty much the same story). Crohn's disease is fiendishly difficult to diagnose, because basically all abdominal ailments have the same symptoms, making it difficult to rule things out. That makes for a frustrating time leading up to a diagnosis.

I'll admit that the frustration doesn't end with a diagnosis--sometimes treatments don't work, and sometimes they stop working after a while. Lots of doctors are idiots, and it's tough to live with a disease that isn't very visible to your friends and co-workers but can leave you feeling awful.

But it will get better. Eventually, you'll get a diagnosis, and that will lead to a treatment, and that will make you feel (at least a little) better. If it doesn't, the next treatment will. Most likely, you won't go from feeling terrible to feeling perfect overnight, but things will improve gradually over time. The drugs will make things better, and you'll learn how to live with whatever symptoms are left.

Good luck!

Right now you're worried, so you'll be thinking the worst. This illness has some type of depression link to it. So when things are acting up, it ends up feeling mentally awful...
I suggest to talk about your issues with people that are going through it like on this forums, it helps so much.
Don't expect your doctor or doctors to figure it all out because if it turns out its IBD/IBS, its different for everybody and there's going to be a lot of trial and errors. Imagine if everybody had to deal with this, I kind of look at it like that now. I see things some people deal with thats worst then this and I'm glad I don't have it (liver problems being one).
shoot, I was about to step out into the world and be on my own just before all of this happen to me. Try not to think so much about what if when it comes to the future, it'll only make things worst.

I remember going to the ER 3 times and telling them how much I was bleeding and going to the bathroom, got sent home those times. ended up losing my job because i was so dizzy, stayed home pissed off for two months before i went to the hospital and got a blood transfusion. thanks to my two nephews I wanted to see. Sometimes it feels like nobody's listening. it sucks but you gotta keep wanting to get better.

Hi and welcome! Crohn's disease can be very difficult to diagnosis. There are people on the forum that it took them years to get their diagnosis, and there are members that are still waiting to be diagnosed. I know the thought of being diagnosed with Crohn's disease is scary, but there is hope. It won't be easy, and it can take time to find the right treatment for you, but you need to think positive in that you will find what works for you and get better. You will have good days and bad, but you will be able to live a normal life.

Please let us know how your appointment went. We are here for you if you have any more questions or concerns.

Hi Daunting and welcome!

Ditto what Jill says above. Crohns & IBD in generally can be mentally overwhelming. But it's not the end of the world - I promise!!! Keep reading around here and you will find stories from many people that have had things so, so, so bad. Help comes in many forms - medicine, surgery, dietary changes - it's different for everybody. And sometimes it finds a while to hit on the right one.

Hang in there! You are not alone. We have all been thru various stages with our disease and here we live to tell about it!

Good luck with your appt tomorrow. Since you are so nervous, is it possible to take someone with you? This way you have another set of ears to listen to what the doctor is telling you. You should also take a list of questions you want to address so you don't forget anything!

- Amy

Update

Hi everyone

Thought I'd post an update on my last gi appt. I am very very disappointed and confused. My pill cam came back clear of crohns so right now the only thing we have to go by is the small ulcers I have on my TI which he says could or could not be crohns. He doesn't understand why j am having constant diarrhea and doesn't want to prescribe any crohns medications because they are so toxic. He prescribed flagyl and cipro but hey are not working no surprise there.
I went to see a phycologist on Monday who suggested that I get an MRI done don't know if that will help out or not. I have been through way too many tests that I lost track of and all came back clear or inconclusive. So what s wrong with me.
I have a family dr appt today and going to ask to try some Ibs d medications or even maybe entocort.

I need help so bad right now

Oh, Daunting, I am so sorry you didn't get any answers.

Did you GI give any idea of what else could cause ulcers in your TI other than Crohn's?

Good luck with your family doctor. I hope he/she can help you find some relief.

Hi.

No he did not say anything. He asked me weird questions like if I drank alot or was an alcoholic, I personally think he thinks its my pancreas.
But honestly I think he is wrong and it is crohn's.
I have constant Diarrhea every morning. For instance last night I only ate a very very small meal and nothing during the day and I think I went to the bathroom urgenly for 15 to 20 times until it stopped, now that it stopped I have pains in my abdomen.
My feelings of this is I have the start of crohn's and that there is currently no damage and they are unable to make the connection between the two because the biopsies come back either inconclusive or non-specific and that there is no damage showing. I know I have inflammation in my body, my joints ache and my asthma is always wheezzing. But each time they do
the inflammation blood tests it comes back border line and they blame it on my asthma. For god sake this is my third doctor. I have an appt witn my family doctor today and will ask him if wants me to go back to the grouch. I know he isnt the fantastic doctor but at least he was treating me for crohn's. The worse part of this was I didn't ask for a second opinion when I switched doctors I just wanted them to treat me for what the first doctor had told me it was and to actually take the time to know me and not just a number.


I'm sorry I'm just so fustrated right now. I would love to have an icecream right now.
LOL

Vent away. Believe me - too many of us have been frustrated by this disease (and all it's family of diseases) at one point or another.

Just curious, has the doc mentioned prednisone?? It seems to be the "go to drug" for a lot of GI's and maybe it would give you some relief?

Don't worry about the "strange questions"? He's not thinking you're an alcoholic, he's trying to rule things out. I know my husband had gastritis a few years back, and one of the aggrivators was alcohol. It's all a big guessing game unfortunately. Sucks for sure.

Hi.

The gi doctor doesn't want to prescribe anything at this Point because he feels it is not crohns that is making me sick My family doc said after the course of antibiotics the gi prescribed he will contact the gi doctor and try me on entocort to see
I hope that will help me out.

I am really at a lost I keep wondering why no wants to help me. I know the meds are pretty toxic but we can at least try.

@Daunting, you have to keep your head up and stay positive; people do want to help but lu ike others have already said, it can be difficult to diagnosis these things. I would like to know if in both of the colonoscopy procedures was a biopsy taken either time? That is standard procedure for things like this and looking at the tissue under a microscope is about 70% accurate in diagnosing crohn's. Also, have you heard of Celieac's disease? It causes your hair to fall out and causes GI problems. It is basically a food allergy involving gluten.

Hi

Yes I have had the celiac test several times always comes back inconclusive until they do an endoscopy which comes back negative each time. I have had two colonoscopies so far within one year and both say unspecif or possible crohns nothing conclusive.I understand what you say by keep my head up but right now it is incredibly hard. I am now seeing a phycologist once a week in hopes that it will help out with my mind.

I don't even know what other tests would be good to try.

Not sure if I know other good tests. If it is crohns or ulcerative colitis and inflammation is present, taking a biopsy and looking at the tissue is about 70% accurate.

You have done the barium liquid to look for problems that way. I know that it must be tough but hang in there.

When the biopsy tests come back inconclusive to the best of my knowledge what that means is the technician looking at the tissue under the microscope does not see inflammation granules that have a pattern consistent with crohn's. People with crohn's typically have inflamed tissue that looks a certain way.

Thanks for your posts

I am just so much at a lost right now. I just keep wishing there was an easy way to conclude or exclude that a percent has or will have crohns. Some kind of test that is 100 % accurate would be nice. But we can all dream.
My family doctor said he might try and contact my gi this week before my next appt with him and see what is actually going on. I know they have more tests scheduled fir me which are all repeat tests from the others I've had so far.

Can someone have crohns with no damage showing on any of the tests. ??

Daunting, frustration indeed. I'll tell ya a good one. After two bowel perforations and a stoma. I was finally 'diagnosed' with Crohns in Jan 2011. Diagnosed....'Well, we're 95% sure it is crohns, we have to leave a margin for error!'
Oh FFS!!! I gave him...the look. Oh, if you saw my look, well, I assure you he probably had the big D himself that afternoon!!! :ymad:

As sick as you are, I do promise, it will get better. Even if they just treat the symtoms, eventually they will get to a diagnosis. But dont be surprised if you get a 95% diagnosis.

You may be in the start of IBS, or something else. Get tested for everything, including ALLERGIES.

And might I add.....not eating can cause the big D too! I know that just made everyones day didnt it?

Misty

sounds like you're having a rough time!
I had a pretty swift diagnosis as pretty much all of my tests came back abnormal and pointing towards Crohn's (something that's a slight rarity it seems!)
Have you thought about suggesting lupus to your doctor? It sounds like you're having a multitude of symptoms and although Crohn's has the ones you have, lupus caused digestive problems, hair loss, joint pain (as its an auto-immune disease like crohn's.) It's worth asking about, maybe it's something the doctor hasn't thought about?

good luck, I hope you feel better soon xxx

Daunting said:

Thanks for your posts

I am just so much at a lost right now. I just keep wishing there was an easy way to conclude or exclude that a percent has or will have crohns. Some kind of test that is 100 % accurate would be nice. But we can all dream.
My family doctor said he might try and contact my gi this week before my next appt with him and see what is actually going on. I know they have more tests scheduled fir me which are all repeat tests from the others I've had so far.

Can someone have crohns with no damage showing on any of the tests. ??

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Yes, actually the last colonoscopy I had was routine when I was in remission and the doctor found absolutely no inflammation or sign of scarring from previous inflammation, he said he found no sign at all of crohn's, however, I still have crohn's that I feel in my body day to day, like pain in the joints, inflammation in the eyes, etc. One day it might get really bad again with the big D, vomiting, malnutrition, etc., but hopefully it will be a very long time before I have a flare like that.

I don't like to push prednizone, but seriously if you have inflammation why don't they try it? Entocort is not as strong. Shrug. They started me on prednizone and then they moved on to the other drugs.