Muddling through a diagnosis

[Kendra2276]

Hello.

I just need to vent, have someone to talk to, and see what your opinions are.

Clinic A: Is stuck on IBS. Their rationale is: colonoscopy/endoscopy was negative. Biopsy showed inflammation however the biopsy is not linked to Crohn's.

Clinic B: They are thinking that I am suffering from Crohn's. Their rationale: CT scan showed inflammation of the terminal ileum along with swollen lymph nodes. The capsule endoscopy showed multiple and I mean multiple aphthous ulcers along the terminal ileum.

Both clinics can agree on the fact that I have lost a good solid 20 pounds and suffer from chronic diarrhea. Also, eating causes right side pain.

In addition to stomach problems, I suffer from migraines. Neurology thinks the migraines are out of control because of the multiple aphthous ulcers.

Lastly, I ended up in the er on October 8th and Feb. 16th. October 8th was for stomach pain. Recently primary care prescribed Uceris. On Feb 16th, I had a severe reaction to the Uceris. From the er visits, I noticed that my wbc count went from 5.69 to 10.40 (still in range but an increase and 10.5 is the cut off), neutrophils went from 4.04 to 9.66 (outside of the range), lymphocytes went from 1.10 to .53 (outside of the range),and globulin is at 3.9 (outside of the range).

The frustration lies in the fact that I cant see gi until march 22. I am falling apart. So thoughts opinions, how did people get diagnosed? I just want the pain to go away.

 

[Khalid Saeed]

Hi Kendra,
Welcome to the forum, feeling so sorry that you are feeling so frustrated. And I hope you find answers in the very near future.

In fact, both clinic A and clinic B are the best methods for diagnosis beside the inflammatory markers (CRP,ESR) which you mentioned nothing about them.
What i feel that you are at a very close point to be diagnosed, hang in there and just wait for your GI app.

In the mean while you can monitor your diet to feel comfortable passing the next few days.
With the right medications you will definitely feel 100% okay

Once again hope you find answers soon.
Hugs
Khalid

 

[ronroush7]

Welcome. Can you call the doctor's office and ask if there are any cancellations that they write you in?

 

[Jabee]

Clinic A should know that only a minority of crohn’s patients have biopsies that are positive for crohn’s (meaning granulomas are present). Your CT and capsule endoscopy both confirm terminal ileum thickening and ulcerations. Does clinic A have another diagnosis for you? I am constantly surprised that some GIs won’t diagnose crohn’s without a positive biopsy; it’s quite common for people not to exhibit “classic symptoms” of one or another illness. Does either clinic have a treatment plan?

I suffer from chronic migraines also, and they’re always worse when I’m glaring. If you don’t already keep a food diary you might want to start. It can be really helpful in determining what foods your gut tolerates best. A month is a long time to wait when you’re suffering. Are you on a cancellation list? My GI recently retired and when I phoned one of the GIs who took over his practice last October the earliest appointment I could get was for July 2018. It was so absurd that I actually laughed. The wait time can be frustrating (and in the case of an emergency actually dangerous). I don’t know enough about what your blood work means but I’m sure someone will be along to help with that. Hope you feel better soon!

 

[Kendra2276]

Hello.

I am on the waiting list to see clinic B.

Its just hard. Last Monday, I showed primary care the report for the capusle endoscopy. The report says,"Crohns most likely". Based off of that, primary care prescribed Uceris. Friday night, I had a severe adverse reaction to the medication. Urgent care treated it like anaphylaxis and then I was sent via ambulance to the er. At the er, the migraines kicked. I talked to the er doc and its like what do I do for the pain, inability to eat, and function. Er doc was like call gi/primary.

Called gi today and was like I ended up in the emergency room, is there anything you can do? And they were just like hang tight.


Food wise, Im normally fairly restricted. By the time you eliminate migraine triggers, food allergies, food sensitivities, and food that hurts my stomach. I m at the point where sweet poatoes, rice, and gf oatmeal kills my side.

So onwards and upwards......

 

[ronroush7]

Hello.

I am on the waiting list to see clinic B.

Its just hard. Last Monday, I showed primary care the report for the capusle endoscopy. The report says,"Crohns most likely". Based off of that, primary care prescribed Uceris. Friday night, I had a severe adverse reaction to the medication. Urgent care treated it like anaphylaxis and then I was sent via ambulance to the er. At the er, the migraines kicked. I talked to the er doc and its like what do I do for the pain, inability to eat, and function. Er doc was like call gi/primary.

Called gi today and was like I ended up in the emergency room, is there anything you can do? And they were just like hang tight.


Food wise, Im normally fairly restricted. By the time you eliminate migraine triggers, food allergies, food sensitivities, and food that hurts my stomach. I m at the point where sweet poatoes, rice, and gf oatmeal kills my side.

So onwards and upwards......

Wishing you the best

 

[Jabee]

Ugh. That sounds awful. I sometimes think I need to go live in a nunnery to get my migraines under control (regimented day, no fancy foods, no stress). Botox really helps me with them, though. What do you take for an acute migraine medication?

The pain issue is really depressing. Sometimes I feel caught between my primary care physician and whatever specialist I need to see, and so many doctors just don’t want to deal with pain. The end of March is a long time to wait for the GI (even though it’s common). Can your primary care doctor prescribe something else, like prednisone? If you can’t eat or drink anything, don’t hesitate to go back to urgent care and/or the ER. When I’m in a bad way I switch to a liquid diet and it really helps. Can you try that? Bone broth is good since it has a lot of protein. I’m sorry I don’t have more advice for you.

 

[Anna's Bandit]

Welcome:ghug: