Diagnosed and Undiagnosed with Crohns - need help

[jac521]

I my name is Jo and I live in Maryland. I am 59 yrs old. I was first diagnosed when I was 21 yrs old in Pennsylvania. Upon moving to Maryland a few yrs. later whenever I would go to a GI Dr. and tell them I had Crohns I would be laughed at. I was even told I couldn't have Crohns because I wasn't thin. I am bi-polar and I would be told by Drs. that I "had a psychological overlay" hence the diarrhea was all in my head. I finally got fed-up with telling Drs. that I had been diagnosed with Crohns. They would do a colonoscopy and give me meds for IBS implying that it was because I had a psychological "overlay".

I then just suffered for years in silence. In 2005, I went to a Gi Dr. and he gave me a colonoscopy. He found inflammation and ulcers on biposy and never told me about it or treated me for it. (I found this out when I went to a Dr. in 2008 and he got his records). I started suffering in 2005 with Uveitis and skin sores.

I then went to another GI Dr. and told him about the Uveitis, he did a colonoscopy and told me I was fine and to come back in 9 years. In 2008, I went to another GI Dr. as my skin sores and Uveitis was chronic. He got my records from the Dr. in 2005 and found that I had inflammation which I was never told about or treated for. He did a colonoscopy and found "mild" Crohn's disease on biopsy at the end of the small bowel. He put me on Entocort EC 9 mg and I felt great.

Whenever he would taper me off of it, I would start to flare-up and have to go back on it. On one taper I got an entercutaneous fistula which took months to heal on antibiotics. He then wanted to put me on Imuran which I refused as he said he made a mistake and my Crohns was worse than he thought initially. On another taper I got a real bad fissure and alot of bleeding and was put back on Entocort and then the Dr. did a colonoscopy and then told me that I didn't have Crohns disease after all, only IBS and gave me Levsin and told me to taper the Entocort EC and stay off of it.

I then started having 8-9 bowel movements a day. I went to another GI Dr. and he said he doubted that I had Crohns. He did a CT scan and told me I didn't have Crohns and wouldn't give me any Entocort. After 6 mos. being off of Entocort, I started having real bad arthritis and was walking with a cane. I was referred to a Rheumatologist by an Ortho. Dr., and the Rheumatologist told me that I had arthritis that is seen in Crohns patients and that I "was in denial about my Crohns". I told him that I was told I didn't have Crohns and that the Dr. wouldn't give me any medicine for it. He told me to find another GI Dr.

At this point, I was so disgusted, I went home and found some Entocort and started taking it and the arthritis went away. I now am going to a Dr. who is supposed to be a Crohns specialist and he just did a colonoscopy and told me I didn't have Crohns (I am currently on 9 mg. Entocort). He now wants to do a capsule endoscope as he did an MRI which showed possible stricturing in my small bowel.

I am throughly fed-up and disgusted. I don't want to have Crohns, nobody does, but I need treatment for it so I can have some kind of a life. Does anybody know why I am told I have Crohns and then I'm told that I don't? Is it because the Entocort masks it over? I feel like I need to go off the Entocort for another 6 mos. until I am real sick and then go have a colonoscopy.

Being told that I have it and then being told I don't have it over and over is like being on a merry-go-round. It's like each Dr. has to see it for themselves. I have a high WBC, high c-reactive and high E-sed rate. I have had fissures and an entercutaneous fistula, uveitis and skin sores. Can somebody give me some advice where to go or what to do in this situation. Thanks

 

[SarahBear]

Hi, Jo! Welcome to the forum!

I'm sorry to hear what you've been through - it sounds awful!

Entocort reduces inflammation, so it is possible that taking it clears up anything that might be seen during a colonoscopy. Have you been prescribed the Entocort for the arthritis or is it left over from Crohn's treatment?

Crohn's can be very tricky to find at times, considering that it comes and goes and can be located anywhere throughout the digestive tract. Do you know if biopsies have confirmed Crohn's at any time? Biopsies are very, very important in diagnosing Crohn's.

Do you ever have blood in your stool? Has your fistula been healed?

You might want to request to do the dummy pill before doing the actual pill cam. If there are possible strictures, a pill could get stuck, requiring surgery.

Do you like your current GI? Do you feel like they are making your care a priority and doing all they can to determine what is going on? If not, don't hesitate to look for another. You might have to go through some more bad ones to find a good one, but I promise there are decent, caring GIs out there!

:hug: I hope things get better for you soon!

 

[jac521]

Hi SaraBear and thank you.

I am currently taking Entocort which I had left over from when I was told I didn't have Crohns the last time. When I started taking it again the arthritis went away. Also I was bleeding every time I had a bowel movement when I was off of the Entocort. When I started the Entocort the bleeding stopped and the arthritis went away.

The inflammation showed up on two different Dr's. Biopsies. The one Dr. never told me about it or treated me for it. The second Dr. said I had mild Crohns, put me on Entocort and I was fine until I would get tapered off from it. The second Dr. did another colonoscopy and said I didn't have Crohns after all and told me to stop it. The Colonoscopy was done while I was on the Entocort.

I am not sure how I feel about my current Dr. He is supposed to be a Crohns specialist and he just did a colonoscopy on me while I was on Entocort and said I didn't have Crohns. He however wants to do a capsule study which I have never had done. I am so tired of GI Drs. and their diagnoses and undiagnoses.

Why when one Dr. finds the inflammation on biopsy won't another Dr. accept it? It seems like all they want to do is expensive colonoscopies. I hate to have to take myself completely off of the Entocort to prove to this specialist what happens to me and that I have Crohns.

 

[SarahBear]

I think it's fairly common for doctors to be hesitant to treat based on another doctor's findings. Most of the medications used to treat Crohn's can have very serious side effects, so they tend to be cautious in prescribing them.

It might be worth asking him to try another colonoscopy while you're not taking the Entocort. Going off it isn't ideal, but it could help you get treatment and a diagnosis. The capsule endoscopy is also a good idea, but like I said, you might want to request to do the fake pill first, especially since there are concerns about strictures.

When you bleed, what color is the blood?

 

[jac521]

When I have bled the color is red. I just got over a fissure which was bleeding also.

My Dr. just did an MRI before I had the colonoscopy and It showed strictures on the right side of my small bowel. He said I will have the fake cam done prior to the real one.

When I have the capsule endoscopy will it make a difference whether I am on or off of the Entocort regarding the results?

 

[SarahBear]

Well, since there's bleeding that indicates that there's more going on than just inflammation (I think). I might be in a little over my head here, so I'm going to tag Crabby and David in this post. One of them will probably have better advice for you.

 

[Jennifer]

"Blood in your stool. Food moving through your digestive tract may cause inflamed tissue to bleed, or your bowel may also bleed on its own. You might notice bright red blood in the toilet bowl or darker blood mixed with your stool. You can also have bleeding you don't see (occult blood)." http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=symptoms

There's some quick info for ya on bleeding and Crohn's jac521.

So many GI doctors. D: Yes they do like to look themselves with a scope (find a new GI if they don't want to and you haven't had one in a while) but they usually run more tests than that. I mean if your issue is in the terminal ileum then why just scope the colon? Run some imaging tests to see the small intestine. A pill cam is a start but there's also MRI, MRE, small bowel follow through, CT scan etc.

The Entocort will hide current inflammation unless its really bad but what it wont hide is any damage that's been caused over the years. IBS causes "microscopic inflammation" in some patients. http://emedicine.medscape.com/article/180389-overview#a0104 Now if your doctors have found strictures likely caused by inflammation over the years, that's not microscopic.

Another thing to keep in mind is that IBS does not cause bleeding or fistulas. Feel free to check out this table in the differences between IBD and IBS (scroll down): http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

Feel free to check out this image and the links below to learn more about
Extra Intestinal Manifestations.

http://www.hopkins-gi.org/GDL_Disea...DL_DC_ID=D03119D7-57A3-4890-A717-CF1E7426C8BA
http://www.crohnsforum.com/showthread.php?t=22407

I know you don't want Crohn's and are sick of tests and doctors and probably don't want to deal with medication for the rest of your life either. None of us do. You want answers and I understand that. Keep in mind though that if you just treat Crohn's with steroids you're going to have scar tissue build up from chronic inflammation (you already have a stricture likely from it) and those can put you at risk of a blockage which may require surgery. Hopefully your current GI will be able to take you seriously. Have them test your vitamin levels if possible, if they wont, have your general practitioner test them.

Keep us posted on how you're doing.

 

[jac521]

Hi Crabby and thanks a lot.

I have been told that my bleeding was probably due to hemmroides. My Dr. Minimizes everything I tell him. A couple of weeks ago I would go to the bathroom a small amount and still feel like I had to go and felt a lot of pressure and then pain started in my rectum so bad I was screaming. It felt like my entire rectum was swollen and inflamed. I called the Dr. And he called in a suppository for me of cortisone. He said it was probably hemmroides, however I have had hemmrodies for years and have never experienced anything like this. I was totally drained from the pain and spent two days in bed. I read where this something called Tesmsus ( sp.) and it felt like that was what I had. Do you know anything about like what I just described?

 

[David]

You've had positive biopsy results in the past, had an enterocutaneous fistula, and now appear to have stricturing and with everything else you've said, I can just about guarantee you that you have Crohn's.

I know it's frustrating, but jump through the hoops with this new doctor and let him do his capsule endoscopy and see what he wants to do from there.

My suggestion would be to get a copy of ALL your records yourself and then start to educate the ever-loving heck out of yourself regarding Crohn's disease so that you can advocate for yourself. Unfortunately, having to advocate for yourself is something that is needed far too often with IBD. But whether we like it or not, it is needed.

This way, if a doctor says, "Nah, I don't think you have Crohn's" you can look them in the eyes and say, "I have A, B, C, D, E, F, G" and have had, "1, 2, 3, 4, 5, 6 and start talking about papers and studies and pulling out results in your well organized binder so that the doctor realizes they are going to need to work WITH you and that you are your own advocate and know what you're talking about.

And we're here to help you with that every step of the way

 

[Jennifer]

The feeling of needing to go again even after you just had a bowel movement is fairly common with IBD jac521. I've dealt with it myself as well. Here's info on Tenesmus: http://www.nlm.nih.gov/medlineplus/ency/article/003131.htm

Now the extreme pain you described with only passing small amounts of stool still points to a stricture. Although I'm concerned that you may be dealing with another one besides the one found in your TI due to the location of the pain. Many members on the forum deal with strictures caused be a lot of inflammation in their rectum and often use steroid foams/enemas to try and reduce the swelling.

Simply pointing a finger at hemorrhoids is extremely frustrating. "Prove it." You had colonoscopies done while you were dealing with blood in your stool. Scopes look at and even take an image of the inside of the anus to show if there's internal hemorrhoids or not. Not only is this done but in your report it will say what category/degree/grade of hemorrhoids they are. The report should also say if they are non-bleeding or not. Check the past reports and if it says that they are "non-bleeding" then shove the report down their throat and ask for further testing and/or proper treatment.

I agree that you have to jump through their hoops to get a diagnosis. Its stupid and it not fair. No argument there. Problem is that if you don't things will just get worse over time. Many people on the forum got their diagnosis AFTER their first surgery and some of those surgeries resulted in a stoma. I really hope you're able to get a concrete diagnosis and treatment before any of that has a chance of happening.

 

[jac521]

Thanks to everyone of you that have replied to me. I really appreciate it.

Crabby -

Thanks for the info regarding the bleeding and hemorrhoids. I have so much to learn.

I just looked at the paperwork that I was given upon discharge from the colonoscopy. Sure enough it says: "Impression: Non-bleeding internal hemorrhoids were found during retroflexion and were moderate".

It also states: "the sigmoid colon,splenic flexure and cecum appeared normal. Biopsies were taken with a cold forceps from the right colon and left colon for evaluation of microscopic colitis". "Anal papillae were hypertrophied". "Diverticulosis in the descending colon, in the transverse colon and in the ascending colon". "The examined portion of the ileum was normal".

Crabby - If the Dr. examined the ileum why wouldn't he do biopsies there? Is it because he wants to do the pill cam??

Thanks.

 

[Jennifer]

Jac521, often if no abnormalities are seen than a GI may not take biopsies there because of the possible risk of getting Creutzfeld-Jacob disease. "...due to the potential risk of variant Creutzfeld-Jacob disease transmission from prion proteins which are prevalent in the lymphoid tissue of Peyer’s patches in the ileum. Although the use of disposable forceps may reduce the risk of transmission, there could still be contamination of the intubation channel of the colonoscope and prion protein is resistant to the standard endoscopic cleaning process.1 If the extent of examination needs to be documented, then a photograph of the ileocaecal valve or ileal mucosa is preferable." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774436/

 

[jac521]

Are strictures caused solely by Crohn's? Could the Entocort that I take cause strictures in my small bowel? (Stricturing showed up on an MRE of my small bowel.)

 

[Jennifer]

Entocort helps inflamed tissue heal. Healing causes scaring. Chronic inflammation over time definitely causes strictures. Another thing that could cause a lot of scaring is infection caused by diverticulitis yet you had a test done already that showed inflammation in your terminal ileum so my money is still on chronic inflammation being the cause.

 

[jac521]

Crabby -

I have never been told before that I had diverticulitis until now. My last colonoscopy prior to this one was 3 years ago. It does state on the paperwork I was given from the colonoscopy that the diverticula were "small". I am now trying to understand diverticulitis as well as IBD.

Regarding the hemrrohides - does non-bleeding hemrrohides mean that they never bleed?

This is all so complicated and confusing at times. I have a lot to learn. Hope I am not asking too many questions.

THANKS!!!

 

[Jennifer]

I don't believe it means that they never bleed. Stage one does have the ability to bleed. Thing is they were not bleeding at the time and from what I was told was that if they were touched with the scope (same with extremely inflamed tissue or ulcer) then they would likely bleed if they were going to (depends on how inflamed they are). This is how my first GI explained it to me and he's the one I respect the most out of every GI I've seen. He also showed me before and after images of how much these areas can bleed after being touched and also after taking a biopsy.

Its possible that yours bleed from time to time but its also possible that you could have blood coming from somewhere else (I had bright red bleeding from my terminal ileum yet also had stage one hemorrhoids (I've actually always had them but never saw more than a spot of pink on toilet paper from them due to irritation from repeated wiping)). Hemorrhoids are too easy to blame when it comes to blood loss.

 

[David]

I was thinking. Through all of this, have they tested you for Syphilis, Chlamydia, and Gonorrhea? They can cause fistula to form as well as a myriad of other atypical symptoms.

 

[UnXmas]

Hi. I wasn't diagnosed and undiagnosed repeatedly like you, but it did take years to get a diagnosis. I did get there in the end though, and with hindsight I think I could have gotten diagnosed much faster.

Regarding hemmorhoids: I have them and they bleed a lot. I'm sure you realise this, but even if hemmorhoids are the cause of your bleeding, it doesn't mean you can't have Crohn's as well. And in fact it could well be because of Crohn's that you have hemmorhoids - diarrhoea, frequent bowel movements and other Crohn's symptoms can cause and aggravate hemmorhoids, so if you are found to have hemmorhoids it gives even more reason to investigate the cause.

It does sound like you have an Inflammatory Bowel Disease or something very similar. When it was taking me so long to get diagnosed a big part of the problem was that doctors weren't even referring me for tests because they didn't think my symptoms warranted it. It must be even more frustrating for you having all these symptoms and positive test results and still having doctors not take you seriously!

I don't know much about diverticulitis, but I know one person who has it and from the little she has told me it's something that should be taken very seriously. It just doesn't make sense for your doctors to have not even discussed it with you.

I'm really sorry you've had such a hard time. If it gives you any hope, I did get diagnosed eventually. Even after many years you shouldn't give up. I think I spent too much time trying to persevere with whichever doctors I got referred to - if I were going through the diagnosis process again I would trust my judgement and keep asking to see different specialists rather than feeling I ought to stay with one I knew wasn't helping. I sometimes found that telling doctors what I thought was wrong with me or what tests I needed didn't go down too well. They seem to want to feel they are the ones making the decisions. When I did find good doctors, I didn't need to make suggestions to them because I could see they were taking me seriously and I could trust them to make useful decisions. There are good doctors out there. Sometimes it's very hard to find them, but eventually you will.

 

[jac521]

David -

I have been tested for all the things you mentioned as well as HIV.

UnXmas - Thanks. How did you go about finally finding a good Dr?

I have had it with Drs., I am at the point I don't believe anything they say or do.
I am very frustrated.

 

[jac521]

David,

I know I wrote a lot on my other thread. I was wondering what you thought about the Entercutaneous Fistula description and the Dr. telling me it was never confirmed because by the time the fistula gram was ordered, it was healing from the inside. Also, prior to my finger going through my stomach I kept smelling a foul smell for awhile but couldn't figure out where it was coming from.

Your thoughts are appreciated!!!!

Thanks.
Jo

 

[David]

The only thing you took for the fistula prior to it closing was antibiotics? And if so, which antibiotics?

 

[jac521]

I took Cipro, Flagyl and Entocort.
The Dr. wanted to put me on 6 MP but I refused it.

 

[David]

How long from the time the fistula opened to the time it closed with help of the antibiotics? And did anything ever come out of it? If so, what, and how much.

 

[jac521]

About 3 mos. of being on the antibiotics before it closed.

An Urgent care center cultured feces out of it.
I kept smelling a foul smell for awhile before I discovered the hole and didn't know where it was coming from.

My husband kept a dressing on it for me until it dried up. It was a brownish/yellow color.

 

[UnXmas]

David -

UnXmas - Thanks. How did you go about finally finding a good Dr?

I have had it with Drs., I am at the point I don't believe anything they say or do.
I am very frustrated.

It was pretty much just down to luck that I found a couple of good doctors eventually. I just kept asking for new referals, and after many that didn't go well, eventually I happened to be referred to a colorectal surgeon who was good. Then later one of my referals resulted in a good gastroenterologist. Finding a GP who was nice and willing to let me keep trying with new consulants (it's partly down to the GPs discretion when it comes to how many extra opinions you seek) was also through trial and error and perseverance.

I did find that trying to research doctors and finding the ones with the most expertise didn't mean they turned out to be anymore knowledgeable or helpful than ones who were less prestigious. As long as they were in the right specialisation. There was one exception to this where a very advanced specialist turned out to be extremely capable and kind as well - by far the best appointments I'd ever had.

 

[David]

If feces were cultured out of it, unless that test is being disputed, I don't understand how it being a fistula is being questioned.

 

[jac521]

David -

It seems to be that if a doctor doesn't order the test himself, they won't believe the results coming from somewhere else, especially an Urgent Care that cultured the feces from my abdomen????