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My story, any advice welcome!

Hello, I'm meeting with my GI next week, and would appreciate any advice. It looks like I'm in a early stage of Crohn's colitis. Any suggestions about possible medicines or things to ask the GI? I'm in the process of being diagnosed and treated for Crohn's disease in my sigmoid colon.

So, occasional bleeding in BMs started last summer. I thought the bleeding was hemorrhoid related. I rarely saw blood but frequency increased last fall and early winter. A couple of times last October/ November, I saw red mixed into the bowel movement. I was scheduled in March for a colonoscopy to check on the bleeding.

In late December I woke up sick; felt like severe stomach flu. A week later, the acute nature and urgency stopped. I felt improved, but not well. Abdomen swelling. All of my bowl movements were unformed. But not the urgent diarrhea. Ultrasound and X-ray showed a partial obstruction of my large colon. GP suggested Miralax/ Clearlax. After 3 days I was all clear, felt better, appetite came back, fatigued, anemic.

Extra Intestinal Manifestations?

During this time, I had two lung issues. I'm pre-asthmatic. I occasionally develop a spasmodic cough where it's hard to breathe if I get a cold or an infection. I bring it up because this is rare. I might have this situation once every couple of years. But I went into it two times in January/ early Feb. That's not normal. I was prescribed a steroid inhaler in early Feb. It stopped the cough/ inflammation and I was able to breathe again, got off the inhaler, lung function is normal. Hurrah!

In July I get a weird bleeding eye stye. I'm told I have blepharitis. My GP doc and Optometrist said they had never seen anything like my stye. Bad pain and swelling. I looked like I had a black eye. Lower right eyelid swelled, bled and my eyelashes fell out. I got topical steroid/ antibiotic gel for the eye and a short course of oral antibiotic. Eyelashes grew back, I look normal again and not like I've been in a bar fight. The optometrist referred me to an ophthalmologist; waiting on an appointment.

I called the GI's nurse line about the eye stuff, and the GI nurse said a stye was not a extra-intestinal manifestation of Crohn's. Optometrist did some research, and she said it could be connected to the suspected Crohn's.

Other issue: Lower back bone is slightly sore sometimes. My GP says let's watch it. She's not sure it's not mechanical or not.

Lack of gut symptoms:

From Feb to the present time, I do not have physical gut symptoms that are discernible to me. I might have occasional upper abdomen swelling. Occasionally I've seen things that might be blood in my BM. It's unclear and not obvious.

Colonoscopies and Pathology Reports:

March: Scheduled colonoscopy. The surgeon finds inflammatory pseudopolyps in my sigmoid colon. Sends for biopsy. No grannulomas.

No Medicine Prescribed/ 5-ASA Prescribed over phone/ General Confusion

Early May: GI diagnoses Crohn's. Schedules tests to confirm. Calprotectin (SP?) was borderline at 140 (can't remember if it was 140 or 144.) He schedules me for a double endoscope in early August, CT in early June, monthly blood draws, IV iron infusions. Blood work normal but for bad anemia and low iron stores. No medicine prescribed.

I'm confused. Meeting with GI was very short, maybe 3 minutes. Mostly we spoke to a resident, who didn't think I had Crohn's. Was extremely stressed. My stools became unformed and smell weird. Three days later they normalize.

May: I call the nurse line to report unformed stools. My GI puts me on Mezavant (Mesalamine). Due to general confusion, don't start taking the medicine until late June, and I took 2 grams instead of 4.

June-July: I begin IV iron infusions and my iron levels normalize. June CT shows normal, but it can't pick up mild stuff.

Early August: Second scope. Upper and lower. Found a handful of inflammatory pseudo-polyps in my sigmoid colon. The look smaller then in the pics from the March scope.

Biopsy comes back. Everything is normal but sigmoid. Biopsy report reads in Sigmoid colon biopsy: "Patchy acute colitis (severe with ulceration), Negative for granuloma." "A few biopsy fragments from the sigmoid colon show acute colitis with surface erosion and ulcer bed."

I'm surprised I have active disease in my colon because I don't have any gut symptoms that I can recognize as such. The GI told me in May that I did not have ulcers. After the scope he told me he found nothing but the pseudo-polyps, which where smaller then the March scope. So, I'm confused. Thought I didn't have ulcers, which I specifically asked about. Maybe there's different types of ulcers?

My best guess: I'm in a early stage of Crohn's Colitis. Possible extra-intestinal manifestations caused by general inflammation. Wondering about next steps, and what medicines might be appropriate aside from the Mezanant (a 5-ASA). Curious about what biologics might be appropriate if and when the Crohn's colitis gets worse.

I've got a meeting next week with GI specialist. I don't know if he'll suggest other medicines. Do you all have any suggestions for medicines or questions I should ask the GI?

Thank you for reading and I'm sorry for length. It's been a confusing time.
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my little penguin

Staff member
So if you have mild disease they don’t use biologics
Asthma is not a EIM of crohns
Having asthma symptoms (spasmodic croup ) with a cold or infection is common in asthmatics (three asthmatics in the house -only one with crohns )
Most stay on an inhaled corticosteroids (Flovent etc..) during cold /flu season to avoid oral steroids
One week of oral steroids is equivalent to 5-7 years of daily inhaled corticosteroids so oral steroids are avoided

Opthamologist handle eye issues related to crohns theses are uveitis/iritis and sometimes episcleritis
Nothing else

This lists EIM of crohns

If 5-ASA’s are not improving things
Then the next step up is immunosuppressants
6-mp/imuran but high risk of lymphoma

Insurance will require these be tried prior to biologics And failed

Then insurance dictates which biologic is used based on cost

That means humira first then remicade For most
The newer ones (entivyio and Stelara ) will not be covered Unless. You have proven failure to an older cheaper biologic and immunosuppressants
Thank you so much for the information. Met with the specialist and GI said this most recent scope shows the injuries have significantly healed since the March scope. Plan is to stay on the medicine and follow closely with frequent tests.

I really appreciate all of the information and advice you've given on the blog. It's been a confusing time, and it was very helpful.
San Diego
Then insurance dictates which biologic is used based on cost

That means humira first then remicade For most
The newer ones (entivyio and Stelara ) will not be covered Unless. You have proven failure to an older cheaper biologic and immunosuppressants

Not necessarily. Stelara is increasingly being used as a first line biologic for Crohn's. My first biologic was (and still is) Stelara, and my insurance covered it. I never had Humira or Remicade. When I changed jobs a couple of months ago my new insurance company covered it too.

my little penguin

Staff member
You are very lucky then
Most insurances (including ours ) requires step up of meds -complete with documented proof of failure of each level of med starting with 5-Asa
Up to biologics and fought us on Stelara for months even with failure of remicade and later humira
The policies are very clear

Once on a biologic and proven that particular biologic works then it’s less of an issue
We too have changed jobs while on remicade /humira for ds -no issue-while he was already taking it to be approved by the new insurance

No issue with getting remicade or humira approval either but the policy states the patient has to fail the lower level stuff first
It also states Entyvio and Stelara will not be approved unless the cheaper biologics have failed (remicade /humira )