Need advice

[akiya]

Hello,

I am 36 years old and have had issues with my intestines, mainly small intestines since I was in my early twenties. I have had many trips to the ER over the years for "possible appendicitis" only to be told that my mesenteric lymph nodes are swollen, my wbc are always normal. My doctors have continually told me that I have IBS and I am getting tired of being told; it is just irritable bowel syndrome.
I have severe right sided abdominal pain that makes it difficult to stand, sit up and I cannot lay on my right side. I also get extremely nauseated, have diarrhea, most of the time my stools are very soft, I always have pain during bowel movements. I am getting frustrated and upset that I have been dealing with this for years.
So, now they are saying that I have have an IBD on top of my IBS and that they are calling it Crohns??
My questions are: I have been told by many people that I know that it cannot be Crohns because I am "too old" to be diagnosed with it. I have been suffering for years, my IBS causes "cramping" but nothing like this. I am frustrated, tired of being sick and miserable, and feel very alone. Has anyone ever had an experience like mine?
Any help or insight would be greatly appreciated.

Thank you
Akiya

 

[Terriernut]

Akiya, I had my first 'flare' at 34! I wasnt officially 'diagnosed' with Crohns until I was 48 and half dead!

You need a proper Gastro to do tests including barium with follow thru, colonoscopy, CT scan etc. Bloods do not always give the correct results. Your CRP could be perfectly normal while you are flaring away!

Have a look in the undiagnosed forum and you will see what I mean!

 

[Crohn's 35]

I agree with Terrinut! It took me a year of tests and the docs thought it was all in my head,,,even after exploratory surgery and they took out my appendix.. if they went a tad farther they would of found it, idiots. So, I even just had blood work done and all was fine, no signs of infections or anything... I still have pain, but doable.

Don't take no for an answer, sometimes fresh eyes or an experienced Gi could be your answer.

Welcome aboard! :bigwave:

 

[SarahAnne]

Akiya - I was misdiagnosed with IBS when I was in high school, and got my Crohn's diagnosis after an upper GI with small bowel follow through. Like Misty said, you really need a proper barium test or scope to "see" what's going on. Shame on doctors who only check bloodwork, there are so many people here who suffer with UC or CD who have normal labs all of the time.

Everyone with Crohn's is different and has different symptoms, but a lot of what you are describing is common in CD patients. If you don't have a GI who will do some basic tests to see what is going on, then find one. It's complete nonsense to tell someone they are too old to have Crohn's.

 

[xJillx]

Hi Akiya and welcome! I know just how frustrated you are. I had a Crohn's diagnosis, and now it's been downgraded to IBS. Like you, I know this is BS; there's something much more sinister going on.

What tests have led your doctors to suspect Crohn's? Have you had a colonoscopy with biopsies? This is the best way to get diagnosed.

I hope you get some firm answers soon. Good luck and I hope you feel better soon!

 

[curlywatts]

Your not too old, I have just been diagnosed with crohns at the age of 56 (and it doesn't run in my family) after 3 stays in hospital this year involving 2 endoscopies, 2 colonoscopies, ultra sound, x-rays, mri and finally a ct scan which confirmed crohns 99.9%.
Doc says it is in my small bowel and although it could be seen on the ct scan and on the colonoscopy camera they could not get the camera right in to get a biopsies from the affected part.
I am just cutting down on steroids and building up the azathioprine.

 

[JudithC]

Akiya, I was 63 when diagnosed. There is no age limits for any type of illness. YOu're in the right place because we all have experiences like yours in some form or other. Hang in
there.

 

[David]

Greetings and welcome

You know that person that told you you're too old for Crohn's Disease. Never go to them for medical advice ever again.

With that said, all the advice above is great. Get to a good GI and get the necessary testing to figure out what's going on.

Good luck and please keep us updated!

 

[akiya]

Good Morning,
I wanted to thank all of you for responding to me. The posts have been extremely helpful and I will definitely check out the undiagnosed forum.
I am meeting tomorrow with the GI CRNP and then have a colonoscopy next Tuesday.
Yeah, I think that my "friend" is not really a friend and she seems to be there when times are good, but then times like this seem to be inconvenience to her. I am soo done with that.

 

[natatak227]

You are never too old to be diagnosed...and it may take some time. I've been dealing with symptoms since 2007, and still not diagnosis. I'm hopeful though, as I'm going to a new GI at UVA Hospital.

My symptoms also started out like IBS and now are more like IBD. I hope you find some answers soon!!!!

 

[scl]

Diagnosed at age 53 with no family history. Symptoms of chronic diarrhea for 30 years which never caused any problems. No pain.

 

[akiya]

Hello All,

Thank you again for your information and support. My GI is now testing me for Lupus, Crohns, Connective tissue, or as she put it.."everything". She wanted to say it was a "severe" case of IBS, but that I have too many other symptoms to disprove that. She also said it could be an early form of appendicitis. I gave more blood yesterday and I have lost 6lbs total since last thursday, huh. I am trying to eat, but it hurts after I eat and I just do not feel hungry. (had my galbladder removed 15 years ago).

Gaaahh!!

 

[natatak227]

It's good that your GI is being proactive. Don't get bogged down by all the testing though. There was a period of time when I was getting some sort of test (blood, CT, stool, urine, etc) almost everyday for weeks. It can be a lot, but be hopeful they will find out what's going on!!!

 

[stephanied]

Crohns is progressive i didnt go to the Dr. till i was FOR SURE that i had crohns but it started as minor problems similar to IBS who knows maybe its been crohns all along and your problems are just progressing. my labs were all VERY elivated but my GI said that they are not indicatures for everyone that im lucky we are able to monitor my flares in a non-evasive way. I hope you get the diagnosis after the colonoscopy, it was almost a relief to have a dr tell me its crohns its not all in your head i can manage this i couldnt handle the unknown so i can relate. hang in there!!

 

[stephanied]

also the galbladder is a red flag if your not overweight or much older i had mine removed last year (20 years old) and im only 110lbs so my dr was shocked i was having problems. later i read that its typical for someone with crohns to also have galstones so sound like more than IBS to me.

 

[akiya]

Stephanied

Interesting you would say that, because I have already had my gallbladder removed about 12 years ago due to gallstones. I am not in anyway saying that I want to have Crohns or Ulcerative collitis, I do have a family hx, joint pain, rashes, night sweats, low grade fevers, and blood in my stool, is that IBS?

 

[stephanied]

that im not sure you need your colonoscopy. They have over the counter IBS meds at walgreens and walmart have you tried to see if that helps? I did and it had no effect that is when i was sure that it was crohns... just an idea for while you wait.

 

[Lisa]

Interesting you would say that, because I have already had my gallbladder removed about 12 years ago due to gallstones. I am not in anyway saying that I want to have Crohns or Ulcerative collitis, I do have a family hx, joint pain, rashes, night sweats, low grade fevers, and blood in my stool, is that IBS?

The blood is one indicator that it is NOT 'just IBS'...and YES - you should get a colonoscopy to check for the source of bleeding, and to see if there is anything else going on in there. There is nothing like being able to see first hand what the colon looks like - x-rays, MRI's etc can't do that....and the pill cam doesn't give the wole picture either - it could snap a shot just to the side of something like an ulcer or polyp etc...and you'd never know it.