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?? Do I have Crohn's

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Crohn's Disease
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Posted 7/1/2011 1:08 PM (GMT 0)

I got sick about 7 years ago, my family DR said go to ED.  They did a CT scan & the DR there said you have inflammation in your small intestines, I think you have crohns.  Since then I have been to many DR's, some say absolutely you have crohn's while others are not sure.  I have had 2 Prometheus Serology IBD 7 blood test taken 3 years apart that said I was 98% & 97% possitive for crohns.  They have done several CT scans that shows inflammation, and capsule endoscopies that see the same thing.  The problem with my new DR is, he said I think you have crohns, but I can't reach it in order to confirm.  I get sick about every 6 months on schedule.  I get HORRIBLE stomach pains on my right side for the most part, constipation, nausea and fevers.  I got sick again at the end of May and I am still in pain.  The GI dr has ordered a CT scan & blood test for me on this coming up Tuesday.  I am not sure what it will show, but I am sooo frustrated at the hole thing.  I have missed work from both of my part time employers, one of which I carry my health coverage.  Both employers have brought me into their offices recently to discuss my health problems and how this effects my work.  I want to say to them do have any idea what it does for my personal life??  If anyone has any suggestions for me it would be great.

Posted 7/1/2011 1:59 PM (GMT 0)
Hi RMom2 and welcome to Healingwell. Yes it does sound as if it might be Crohns. Have you have had a colonoscopy? You should be seeing a Gastroenterologist and have him do a scope with biopsies. That will give you a diagnosis I think.

You said you had a capsule endoscopy, I am surprised that didn't finally get you a diagnosis. Most who have had a colonoscopy without answers usually have the capsule endoscopy or pill cam and get the confirmation of their disease.

Is the doc giving you any kind of medications? If they strongly suspect you have Crohns, then why not start treatment.

As for your employers, have you applied for FMLA. That would give you some job protection. Hugs and I am sorry you are suffering so.

Gail*Nanners*
Posted 7/1/2011 3:33 PM (GMT 0)
Thank you for replying.  I do see a GI dr, I have had many colonoscopies, and they can't reach where they see it on the capsule.  I am on librax, Elavil both for pain, and amitiza for constipation.  As for my employer they denied me this year for FMLA since you have to work 1250 hrs a year and I work 1248; only 2 hrs short for the year.  My GI DR said that was crap, he filled out all of the paperwork and they still said no. 

I am going on this next week for another CT scan, blood work, and then go back to the DR for the results.  I am sooo tired of feeling like this all of the time.  I used to be happy and love life, but in the past 7 years it has been tough to feel happy when you hurt and the DR's don't give me the answer I so badly need.  I want to feel good again. 

In the past I was taking asacol and librax and felt great, but this GI dr does not want to place me on these drugs.  I am at a loss. 

Posted 7/1/2011 3:54 PM (GMT 0)
It seems strange that your GI would not continue you on asacol, which is a really safe drug and apparently effective for you, especially given the inflammation seen on the capsule. I suggest a 2nd opinion or a complete change of DR. It took me 3 GIs to find someone who will work well with me.
Posted 7/1/2011 4:35 PM (GMT 0)
I have changed GI dr's more than once and I feel like he is really good, but I am not sure what to do.  When I mention to him about how I felt so good on asacol, he says that it would not be the best since it is more for the large intestines not the small.  I said well either way it has worked for me in the past.  I also forgot to mention that I also take zofran for nausea, but it does not work that great for me. 

He has suggested that if we get to a road block that he might suggest that I go to the Mayo Clinic in Arizona.    This is probably going to cost alot of money and time (which I don't have) and will I get the answers I want in a short time.  I feel that I have wasted so much time, money and energy on this I want an answer.  I have had so many tests and Dr's that I just don't want to explain to them my problems again; but then it would be great to know exactly what is going on with me.  He has asked me to stay with him and let him help me.  His words are " I am not taking crohn's off the table, I just can't reach it to take a biopsy of it to absolutely confirm the diagnosis".  "Even if I knew that it was crohn's I would not treat you any differently".  The problem is every 6 mths I get sick, and it takes them about 2 mths to make me feel somewhat good again, then it starts again. rolleyes

Posted 7/1/2011 4:58 PM (GMT 0)
Sorry for all that you're going through! If it were me I would tell my doc to put me back on the asacol and explain to him that as long as you find it helps that's all that counts, especially since crohn's can appear anywhere in the intestinal tract from the mouth to the anus.

It's important you establish with your GI that you want to work with him and that he needs to listen to what you're telling him in order to really help you.

You can also try some natural products as well, especially since at this point you still have good days and tend to have flares on occassion...check out my sig below, since I'm allergic to the traditional oral RX (asacol nearly killed me cuz I'm so allergic to it) I had no choice but to find alternative treatment including altering my diet as well...good luck and I hope you can get passed this frustration.
Posted 7/1/2011 5:08 PM (GMT 0)
And I just read yesterday about a procedure called a double-balloon enteroscopy which might be able to get the biopsies your DR so clearly wants. Perhaps there is no one in your town who can do this scope and a trip to mayo would be worthwhile.

Have you ever tried Pentasa? It is also a 5-ASA like asacol but starts working in the small bowel. If that is effective maybe that is enough evidence for your DR to quite messing around with you!

Another idea: I went gluten free about a month ago to see if that would help with digestive issues I was having despite the meds I was taking. It has helped a lot. Gluten sensitivity is a complicated issue and is not always diagnosed as celiac disease. It might be something you find helpful. I was advised (here and elsewhere) to give it a good 3 weeks before deciding whether it was worthwhile to eliminate gluten from my diet. I started feeling noticably better around the 2 week mark.
Posted 7/1/2011 5:20 PM (GMT 0)
I have tried pentasa, and a number of ther meds, but nothing works as well as Asacol.  I have tried being gluten free for a little over a month, with no difference.   I will ask him this next week when I go back about the double-ballon enterscopy.  Thank you so much for the tips.

It feels really good to get some ideas and thoughts about my next step.  It is hard to explain to someone who is wonderful health and who has not had any problems with their health how I feel.  I am in pain so much, that I only complain when it is so bad I can't move and just cry.  This is not the way I want the rest of my life to be.  I am only 38!!

Posted 7/10/2011 11:29 AM (GMT 0)
well im 22 and i was diagnosed with crohns feb of this year and i lost my job and everything and no one wants to hire me i live in a small town and everyone knows so im at a loss because mine is flaring up so often they consider me unreliable i just dont know what to do someone said theres a program that everytime you go to your doctors you get payed for it i was wondering if anyones heard of this would really help with my money problems and someone said to take aloe pills do these really help at all curious also been feeling really weak lately and tired they said i have 4 different blood protien that are low scaring me said it could cause strokes or heart attacks scares the freaking crap out of me literally im 22 please someone help
Posted 7/10/2011 6:13 PM (GMT 0)
I was pre-diagnosed in the same way you were, I was terribly constipated and experiencing horrible right-sided abdominal pain and nausea and running fever. I thought I might have appendicitis (I experienced the diarrhea symptoms of Crohn's for about 10 years before the constipation took over...all before diagnosis), so I went to the doctor. They sent me straight to the hospital where they ran blood work and did a ct scan. The ct scan showed "an inflammatory process in the small bowel." That really meant nothing to me! I was sent home that day (my current GI thinks that was a big mistake) on Cipro, Flagyl, and prednisone and told to visit my family doctor in 2 days. When I went to that visit she said I probably had ulcerative colitis or Crohn's, so she referred me to a gastroenterologist. I went home and did my research and knew it was Crohn's before my doctor ever ran any tests.

At that point I was unable to do the prep for the colonoscopy because I was so inflammed that the large amount of liquid couldn't get through and I began vomiting the prep solution. Even without getting in there to see it my doctor treated me for Crohn's. I did have a small bowel follow through (I think...it has been 7 years now) where I swallowed barium and they took xrays as it traveled through my intestines. That test showed narrowing and such associated with Crohn's. With that my doctor continued weaning me off of the steroids and put me on azathioprine. I didn't have the colonoscopy for almost 2 years, but when I had it, they were able to reach the area and biopsy it to officially diagnose it as Crohn's (so I suppose my official diagnosis was at 31...although my gastroenterologist was willing to diagnose it before the colonoscopy).

I recently had a severe flare and resection surgery, so I now have the pathology report from that showing Crohn's! One GI doctor I went to wanted to do the blood test, but I refused it because of the cost (and I don't need a blood test to tell me something I already know).

All of that to say that it does sound like you have Crohn's. Your symptoms are very similar to mine. You're likely experiencing constipation during a flare because there's so much damage in your intestines that when the inflammation starts...it's nearly impossible for anything to get through. Since recovering from the resection surgery I have so much energy and feel fabulous. I know how miserable it is to feel so weak and tired and in pain all of the time...I just barely got by at times trying to take care of all of my children while my husband is gone (weeks at a time). I hope you are able to get the treatment you need and find healing soon.
Posted 7/11/2011 9:26 AM (GMT 0)
I would like to point out that the double balloon endoscopy is not for everyone.
If you have an older stricture that is mainly scar tissue it is possible that it has become quite stiff and this sort of endoscopy could actually perforate your small bowel. They would also need to put it down your throat to reach the end of your terminal ileum as your GI hasn't been able to get through your ileo-cecal valve from your colon. I would recommend you have a small bowel series. This way you won't be chancing getting perforated by your GI just to get a biopsy! My opinion is that GIs with less experience with Crohn's are obsessed with getting biopsies which would be complete proof for them to put you on the correct meds or recommend surgery. But it would seem that your symptoms and tests have been proof enough already.

Also, a small bowel series is more reliable for finding strictures than a cat scan and a hell of a lot cheaper.. also has a lot less radiation. The only thing that they could tell me from my double contrast cat scan was that my ascending colon was thickened. Nothing about where the real problem was in my terminal ileum where I have at least 8" of small intestine with the insides no larger than a strand of spaghetti.

My GI tried everything to get into my ileo-cecal valve in 2 separate colonoscopies to no avail. He even used a pediatric scope both times which is a lot narrower. I even contorted myself to see if changing the angle or seeing if letting gravity work would open the valve a little to let the scope in but nothing worked.

I was put on 4 gms of Pentasa and 9mgs of Entocort. I also put myself on a low residue diet that also included eating nothing that couldn't pass through the stricture I had and so far in the last 18 months I have not had any more pain or semi-blockages. But this is a very restrictive diet to be on. I am having surgery in less than a month and I can't wait to have a salad again after the healing period.
NY VEGGIE
Posted 7/13/2011 6:38 PM (GMT 0)
I have talked to my GI dr last week and had him place me back on Asacol, and take me off of the other stuff since it was making me feel like I was going to be sick all of the time.  I asked him about the double ballon and he said it's not for me.  I not sure what to do, he has offered that if I don't start feeling some improvement by my next appointment in August that I could go to the University Hospital for a second opinion.  The problem is I have been to two of the GI drs there and don't like them at ALL.  I feel like I am between a rock and a hard place to get this sorted out.  I have posted a reply on another one's posting about having endometriosis and crohn's which is me too. 

My husband has mentioned me going to Mayo in Arizona to see if they can help.  But I can't stop thinking about the money involved to do this.  I just want to get this thing worked out and stop waiting forever for answers.  This is so frusterating to deal with this problem.  I had read one of the reply's that said it took more that I think 7 dr's to get this worked out.  I hate that so much.  This is our health and they just act like it is no big deal.  My birthday is coming up and I am hoping that I will start to feel good by then.

Has anyone been to mayo?  What are your suggestions???

Posted 7/13/2011 7:00 PM (GMT 0)

I would also like to add that I have severe constipation.  I am also having lots of leg aches at night, for years.  Not sure what that has to do with crohn's but thought that I would mention it. 

It sucks to feel this way.  The other night while coming home from work I cried the whole way.  I get off really late, but I was just upset about wanting to feel good again, not great just good. 

Posted 7/13/2011 11:30 PM (GMT 0)
RMom2, have you tried any diet modifications? I went gluten free about 6 weeks ago and it has really improved my quality of life. If you feel that you can give it a go for a little while, try it for 2 or 3 weeks and see how you feel. Sorry you're having such a hard time!
Posted 7/14/2011 8:56 PM (GMT 0)
I have tried the gluten free diet per my GI dr for over a month with no help.  I know that some foods make my stomach hurt, like fresh fruits and vege's.  I am not sure what to do next. nono
Posted 7/14/2011 10:51 PM (GMT 0)
Hi!

I went to Mayo (not in AZ) 5 yrs ago when I was sick for about 7 months with constant upper GI symptoms. That place ran like a machine. The doctors were great and I got so much testing done in 3 days - it would have taken me 6-9 months to get all that scheduled somewhere else. Bad news - they didn't know what was wrong - they saw that I had some upper GI inflammation and thought it was likely some autoimmune gastritis based on the biopsy, but they gave me a treatment plan and a lot of good advice. Sometimes there isn't a good straightforward answer, but I did feel great knowing that I was thoroughly evaluated and they wanted to make me feel better. As opposed to being bounced around to docs who don't know what to do and therefore don't do much of anything.

The inflammation eventually subsided and I have had no treatment for the last 5 yrs. The inflammation is back (plus other symptoms) and I have already called and set up an appointment so that if the locals can't figure it out, I can be seen by them at the end of next month. Everyone in my family was so impressed with the facility that when my mom was diagnosed with breast cancer, the first thing they did was call Mayo. She didn't end up going because we got in with a great doctor closer to home, but if she wasn't satisfied, we would have gone in a heartbeat. I say go. It is expensive, but it was a great experience.

Posted 7/15/2011 7:31 AM (GMT 0)
You needs some medication to keep it under control. Go see a gastroenterologist asap
Posted 7/16/2011 1:57 AM (GMT 0)
I have he put me back on the meds I wanted him too that has worked in the past.  I'm on Asacol 1200mg 4 times a day, librax up to 3 times a day, and still on Elavil 25mg at night for pain control.  Yesterday marks week one for this new meds.  I am hoping for a miracle.  I broke down and cried to my husband last night on how hard this is to deal with, not only the pain, nausea, fatigue, but also dealing with my doctor, my job and just life.  My doctor said that if this don't work he wants to send me a pain mgmt dr.  What the hell, I get just so tired of this crap.  Sorry for being so negative and blunt, but they don't live with this.  Not that I would wish this on anyone, I just a dr to figure out a great med regiment and when I have a flare every six months, don't take 2+ mths to get me feeling somewhat good again.

Again sorry for being blunt and negative, I am just tired. cry

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