Huh? This is weird........

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crohns5-0

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Mar 2, 2011
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23
So.........

Been sick for over a year, hospitalized numerous times with severe flu symptoms, was treated for everything from swine flu to infections (at least they thought), had my tonsils yanked and then almost bled to death from a post secondary hemmorage. All the flu symptoms stopped last August and the bowel stuff reared it's ugly head. Tried steroids, remicade, etc etc. nothing worked, on methotrexate weekly now since February. Remicade was awful!!!! Had a colonoscopy last August, docs confirmed Crohn's (ulcers / inflammation) detected in my illeum. Suffering from severe pain in my lower right quadrant, cramping and frequent and loose BM's, phantom joint pain and all that fun stuff. T3 dependant etc etc. No bleeding or diahrea.

Went for a CT in December, no crohn's detected. Decided to go for surgery, had a consultation and was planning for late May depending on MRI results. Just went for an MRI March 7th, nothing detected. JUST went for a capsule camera test - guess what? Nothing detected. Saw pics of my illeum. Looks great. But I'm still suffering!

See my doc again on Thursday. What the heck!!! Square 1 !!! :yrolleyes:

Do I have Crohn's??????? Is my drugs working, I don't feel better!!

Starting to wonder.........
 
Welcome, seeing that I haven't welcomed you to the forum :bigwave:. NOTHING surprises me, I have gone through the same thing... nothing is there but I am suffering at the time horrendously? My second and idiot Gi was telling me I have no crohns. Well if he had of went a bit farther he would of seen it. Fast forward my 3rd Gi from another town we moved to, found it right away! So, my theory, depends on the meds at the time, can mask the infections ...this is another reason why many people suffer a long time and no diagnosis. YOU know it is not in your head :ybatty: YOU know you are in pain, so don't give up no matter what the Gi or surgeon says.

I had surgery laproscopic removal of intestine in Ileum, best thing I did and got 7 years of bliss...:hang: keep us posted on what is going on.. Good luck!
 
Stranger things have happened! Weird that you don't feel better but everything looks better! Have you had an uppper GI series or pill cam? Maybe everything is higher up?

So the good news is that you avoid surgery for now... but I hope you can find out why you still feel bad and get some relief soon!

- Amy
 
well the mystery continues...

For sure the capsule test showed no signs of crohn's, the doctor reviewed all 3 hours of travel time through my body and nothing was detected. Where ulcers were detected in my illeum, they were not present. So I'm square one again after a year and half of continual sickness

Doc now thinks I may possibly be more functional than diseased. So possibly IBS instead of IBD. Is the possibly the reason why drugs like Remicade, Aziathoprine and Methotrexate have not worked for me?

But what I don't understand is why would I be sick with flu symptoms for months and months, developed erythema noduosum for a short time and had no bowel issues whatsoever until months later. I unexplainably suffered a bout of C-diff in 2005 and then another right before this madness began which went away in days with Flaygil. I believe this was caused by repeated antiobiotic use as well as the use of Accutane as a teenager.

I do not suffer from weight loss (20lbs over actually) fistulas or bleeding associated with crohn's, and do not suffer from diahrea or constipation. Just severe pain 24/7 and cramping especially after a BM and phantom joint pain.

I'm now scheduled for another colonoscopy at the end of April.

Diagnosis wise it's much better to have IBS than IBD correct??? I have read quite a bit about IBS and researchers believe it may be created post infection of the gut or a disturbance in gut "flora".

Thoughts????
 
Hi there:)

This disease is a strange one. People can go into remission for years and then have the disease come back full fledged for no apparent reason. I bleed too, but it's because I have Crohns Colitis which means that both my colon and ileum are effected by the disease. When I had my first colonoscopy my GI told me that when he first went it he thought to himself, "why is this girl even here?" because my rectum look normal, but it Wasn't until he went in much further that he saw why and it wasn't looking good at all.
 
It's crazy. This whole time I was told I have Crohn's now it's completely up in the air. I was so looking forward to surgery just to get some relief but it's a good thing it hasn't happened!

I was also looking up celiac's disease and I have a lot of those symptoms as well.
 
Surgery is something that I wouldn't be looking forward too. I've never had it, but many here have had several surgeries or are pre-surgery.

It sounds like you have Crohn's to me, but I'm not your doctor. I was hoping it was everything but Crohn's when I was flaring up.
 
Lots of people have heard my horror story, but I will write it again.

I had the same GI for years. She was terrible and unsympathetic, but I had some kind of weird loyalty to her for some reason. When a drug didn’t work for me, she would look at me like she was the principle and I was in detention and she would say, “well, it looks like you failed Cimzia.” Excuse me? Didn’t Cimzia fail me?

Anyway, for about a year I kept coming to her telling her that I was in a ton of pain and that maybe I should get some tests done. Her answer? You have Crohns; Crohns hurts. Deal with it.

Finally, I got a letter in the mail that after about 10 or more years of seeing her, she wasn’t accepting my insurance any more so I better go find another Dr. So much for loyalty.

Sooo, I went to see a new Dr (still my current Dr) who immediately did a bunch of tests on me, only to find that I had had a horrible raging infection for over a year, and he was surprised I was even walking around!

My results got mailed to my old Dr by mistake, and she had the nerve to call me in a panic and say, “Nicole, you are really sick! You should go to the hospital!” I was furious! I should have yelled at her, but instead I just politely said that I was under another Drs care now, and I was going to go with what he advised from now on.

I had to have surgery last year, and I think it is in part due to the fact that she refused to help me get my symptoms under control when she was my Dr. I am now back on Remicade, and it is working well, and I think that the other drugs I tried with her might have also worked if she had found out that I had the infection and gotten that under control before I had tried them. A lot of them should not have been taken while a patient has an infection of any kind!

So I guess my point is, we have all been through Drs not being able to figure out how to help us, so they just say nothing is wrong. I have learned that you have to put up with a lot of Drs treating like you are lying or trying to get attention or something, and always fight and be your own advocate. Keep fighting, and I hope you find relief soon!
 
Also, I totally understand the feeling of looking forward to surgery. Even though I was very scared before mine, I was so tired of being sick, I felt like I needed something drastic to happen in order for me to have any relief! I was almost in too much pain to want to go on before my surgery. I couldn’t work, and I could hardly move. Surgery was really hard on me both emotionally and physically, but in the end it gave me my life back. I don’t know if you will need surgery or not, and I hope you don’t, but I just wanted to say I understand your feelings.
 
Nicole--That's the doctor from hell you had there. Unfortunately even if you have a great doctor with this disease it might not make a difference. Sorry to hear you experienced that.
 
Well my mood has been uplifted for past few days, nice change from the regular low / angry person I've been on prednisone.

I'm not trying to get my hopes up, but I sure would prefer if this is something like IBS or celiacs or something. Anyone with it think that my illness could be IBS?

I have a friend that has had IBS for 20 years and she says no way but I did tell her that cases range from mild to severe.
 
Crohn's is one of the wonkiest diseases around. There's no rhyme or reason to anything that happens to our guts; our entire bodies!

I was (easily) diagnosed at age 8 because my guts were bad and my mother was diagnosed when she was 12. Bleeding internally, surgery, then nothing for 8 years.

16, sick again, dealing with all of the teen angst as well as the return of my Crohn's in a big way and I got a GI who told me that I wasn't sick, didn't have Crohn's, had a chip on my shoulder and needed to be institutionalized for my mental problems. I was in for emergency surgery two months later because he whined at me and verbally accosted me for so long and didn't help me.

Two months after surgery our paths crossed in a very public setting. He knew I'd had surgery (small town) and knew he'd be in deep poop if I decided I wanted to go after him for how he treated me. He fled.

I have come to a point in my life that I always ask for a second opinion if anything feels at all off to me. Keep asking, keep pushing and get the answers you need to fix yourself.
 
It really pisses me off when doctors are only doing what they do for the money, not to really help people. It's really easy to see which type they are by how they treat you. It sometimes feels like the good docs are few and far between, and the great ones are only found by luck of the draw.

I feel so lucky to have found the medical team that I have, but it's been a long time coming and a lot of work to get here. But it's worth the fight to find the right docs for you and not take any crap from the others you meet on the way to finding the right ones.
 
I agree. The doc I have now is good, but most importantly his assistant is my God send. She looks after me very well and I'm so thankful for her.

I particularily enjoyed having my tonsils yanked, almost bleeding to death and the hell I endured for one month after because they weren't even the problem.
 
well scope was a big negative - no signs of crohns. waiting for biopsy results to see whether there is any signs of it not visible

so..............

not sure where I'am at now. Either:

1) I have Crohn's, the drugs (which kicked my butt) have put my crohn's in remission even though I'm still suffering from severe pain in my lower right quadrant and cramping after BM's and I also have IBS or something similar:


2) I don't have Crohn's but something else which would explain why I have remained sick, and the reason all my CTs, MRIs, and scopes have all come back negative for signs of crohn's dating back to dec 2010

UGGHHH!!!
 
Do you feel better after a BM? Thats a symptom of IBS. You could have IBS and Crohn's at the same time, and the meds have put your crohn's in remission. IBS doesn't cause physical signs like ulcers and inflammation, so an IBS diagnosis would not explain all of your symptoms.

I hope you figure it out soon!
 
Hiya

Read this

http://ibs.about.com/od/symptomsofib1/f/painlocation.htm

then click on the Rome111 criteria to see if this applies to you.

One thing about IBS, the pain is usually subsided with a BM, does this happen to you?
Or, does your pain continue after a BM?

Very frustrating, been there done that, for many years!
Keep fighting, don't give up, get another opinion if you can
good luck
xxx
 
sorry for late reply, thanks for input

•Pain is relieved by a bowel movement -NO
•Onset of pain is related to a change in frequency of stool -NO
•Onset of pain is related to a change in the appearance of stool. -NO

So I have no idea. Pain is constant, and usually hell directly after a BM. For hours and hours and hours
 
well talked to the doc's office today - no signs of past or present crohn's detected with my biopsy. So still guessing....

One thing for sure - if you are on methotrexate and they say stay out of the sun -stay out of the sun!!!!
 
I am so sorry you are still unwell and haven't gotten any answers. So, if inflammation and ulcers were found in your TI in the past, what was the cause if not IBD? Has your doctor given you any theories?
 
doc cannot give me any explanation really. He wondersi fI had been taking a lot of advil for pain that may have caused it. I had so many symptoms, all at once really, they went from one extreme to another.
 
If you have had positive biopsies and scopes in the past but you are in remission from crohns then often your scopes would be normal unless you have scarring...doesn't mean to say you don't have crohn's, just that it is not active...surely.
 
agreed, but I only had one positive scope last August but no "bowel" related issues. it wasn't until after that they started.
 

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