After 4 GIs and 10 years of pain a diagnoses!

[Jules905]

Hey all! My name is Julie and I am very new to the forum. I have been reading posts for about 3 months and have just now decided to post because the people here seem so helpful! Long story short...I started developing AWFUL stomach pains in 2002 and they continued maybe 3-4 days a month then nothing for a few months. Finally in 2005 after my weight dropped to 103lbs I saw my first GI. The doc said I was anorexic (I love food! The man was helpless). I saw another doc and he did an upper GI swallow in 2005 and it showed nothing. My pain never fully went away. Then in 2010 I saw another GI in another city who did a colonoscopy and everything came back normal. He said it was IBS. Grrrr. I gave up. Now last summer I was getting sick almost weekly and even had a poo accident on the golf course as the pain came from nowhere. In Aug I couldnt take it anymore so gave in and went to ER. After the ER doc saying my blood was fine she was going to send me home but another doc said to do a CT just in case. Waalaa...inflammation in small intestine and TI. Sent me to new GI and did another colonoscopy (all normal) I was so depressed. My hopes were up that I could get better then nothing. The new GI didn't give up. Did a CT enteroclysis (ughh even being sedated it was miserable) and they found mild to moderate inflammation in TI and a 10cm stricture. Now my Prometheus test came back neg as well but the doc is convinced Bc of CTs and the area its Crohns. I'm on entocort 9mg and pain free for 2.5 months!

What's next? Have a follow up dec 18th...he brought up Remicadee but that makes me nervous as I am in medical sales and around germs all the time. Also, isn't that like a big gun? Should I ask to try something else first?

Also, is it strange to feel great 75% of the time then out of nowhere feel like you are on your death bed?

So much for long story short, I've waiting awhile to post and just got D of the mouth

 

[Angrybird]

Hello and welcome to the forum

I am really pleased you were finally able to get to a good GI and to a diagnosis, even if it is a less than ideal one. Some docs to tend to go from the top down with meds, if you are concerned about this then definetly explain this to the doc and see what they have to say and perhaps check out our treatment forum for potental alternatives to discuss with them. With regards to the stricture that was found I take it this was down to scar tissue? What specific symptoms do you get that 25% that you are feeling bad? Do you notice any worsening in how the tummy feels depending on what you eat?

AB
xx

 

[Jules905]

When the pain is bad, it's really bad. Cant get off the floor and lots
Of D. It feels like someone is stabbing my stomach below right of my belly button over and over and then squeezing. It used to last about 4-5 hours and in this last year it lasts at least 12 and up to about 24 hours. It got so bad one day that I was going to the bathroom and throwing up at the same time (not pleasant I know, sorry).

I haven't found any similarity in the food I eat and the pain. Stress I know is a trigger. I have read so many people's stories here and feel terrible they have pain daily. I don't. Is that weird?

My weight goes from 100-138 lbs. I'm 5'4. I actually joke I have clothes from size 0-8 in my closet because I never know what size I will be!!

 

[Jules905]

Oh and doc didn't say if it was scar tissue or not. I'll have to ask in December.

 

[Kimba12]

Jules, Glad to hear of your progress w/Entocort. I am on a similar oddysey, and trying to find the right docs and treatment. Are you seeing an IBD specialist, someone who only treats IBD patients? My current GI, knowing my reluctance to take Humira for exactly the same things you're experiencing, broke it down for me and said that while he's a great GI, he doesn't have that singular focus, and maybe we should look into a 2nd opinion with a real specialist. I'm going to do it, because I am not 100% sure I need Humira at this stage...I would love to hear back on what you learn/decide.

All the best,
K

 

[Angrybird]

It may be worth looking more on the food side of things as well and perhaps even something like enteral nutrition as this can have good results at inducing remission. Also when you then start to re-introduce foods you are better able to note your triggers for an upset tum.

 

[David]

Hi Julie and welcome

In regards to the Remicade, if they're offering that, I personally would probably go for it. Yes, it's one of the big guns but more and more doctors are moving to the, "Top Down" approach to treatment because the data shows it's what works best. That you already have a stricture (hopefully it's just inflammation) says they need to get your inflammation under control and FAST. So bring out the big guns and do exactly that. Going for the stuff that may or may not work might result in your stricture getting worse and a need for surgery which we obviously want to avoid if possible.

 

[Jules905]

David

Thanks for your response! I'm so new to this so it never crossed my mind to ask if it was inflammation or scar tissue. I'll ask in December when I see my doc. Makes sense what you say, I've been reading this forum for over a month now and surgery is something I def want to avoid!

One thing I am still so confused on and I haven't read about anyone having this, I only get sick a few days a month and then feel great for months and boom! Ouch!!! Pain is severe and only lasts 12-24 hours. Only when I feel bad do I have to worry about knowing where a bathroom is. I guess im just lucky?

 

[my little penguin]

The disease has cycles or flares where it is active then sometimes stops on its own fir a while . The time between flares can shorten or the flares themselves can last years without the proper meds. Food can NOT trigger a flare but certain foods can make you feel worse while in a flare.
I can tell you DS is on remicade at age 9. He does not have a stricture or scar tissue.
We spent close to a year going from the easy meds to this and waiting and waiting to see if each one would work.
Pentasa can take up to a month. Very mild drug rarely works.
Then 6-mp ( immunosuppressants ) takes 3-6 months to work .
So you need to stay on a steroid longer to even see if its working.
Methotrexate can take 4-6 weeks sometimes longer another immunosuppressants .
Then you have remicade / humira.
6 weeks for remicade to get past loading rise but some get better after first dose .
For DS it worked miracles.

As far as germs my son is 9 and in school ( so lots of germs).
Most studies state remicade alone does not increase the risk that much.
Except for things like TB etc....
Look at the treatment section here.
Read the ccfa websites
And talk to your Gi to decide what would work best for you.

 

[Amberly]

Hi!

It's nice to know that I'm not the only one whose tests continued to come back negative! My first GI repeatedly told me it was IBS and that I was basically crazy.

I can go from feeling really good to terrible within a second. It's awful. Like today, for example, I was up and about and laughing and the next second running back and forth to the restroom and curled up in bed.

My doctor wants to start me on Remicade too! And I'm nervous about it. The side effects do not seem pleasant and I've heard it's supposed to a last resort.

I'm glad you have been pain free though! And I hope that whatever you decide works out for you!