Newly diagnosed-input please

[Himalhojo]

Hello there, I was diagnosed with Crohn's last week. I have a follow-up appointment this coming Monday to discuss treatment. My story is perhaps like many in that it has taken quite a few years to come to a diagnosis and still it's a bit fuzzy. I'd love input from any of you who have had similar experiences.

My history:
-I'm a 43-year-old female who has had bloating and constipation for much of my life.
-Started having extremely dry and painful eyes (mostly at night) about 5 years ago. Eyes have also been red and inflamed on and off for 3 years.
-Two years ago started having right upper quadrant "fullness" (not really pain) after eating. Ended up resulting in removal of my gallbladder (which did not resolve my symptoms). Before the gallbladder removal, I asked for an upper and lower scope because I just felt like something else might be going on. GI found some ulcers in my terminal ileum. Took one month of budesonide after a somewhat tentative diagnosis of Crohn's.
-Had a small bowel follow through which came back "normal."
-Two years ago also began having joint pain-worse in the mornings. Mostly in my hips, hands and feet.
-Have had on and off fatigue-almost like the flu.
-About six months ago began having some very occasional gas from my vagina (which I know can be a sign of a fistula). I have a barium enema study scheduled for July.
-All of my laboratory tests have come back in the normal range. Took the Prometheus IBD workup and came back inconsistent with IBD. My CRP is also very low.
-A few weeks ago I had a pill cam (capsule) endoscopy. Came back again with terminal ileum ulcers.

My case seems a bit funny in that I have had almost no typical symptoms of Crohn's-almost all extraintestinal systemic symptoms.

Some of the questions I have, should any of you have experience:
1. My Dr. has already said she'd likely start me on Humira. Does that seem reasonable given my history. I've read that Remicade can be better if there are fistuals.
2. Should I see a rheumatologist? I have a family history of RA. Is it possible other autoimmune diseases could present with ileal ulceration?
3. I have a history of melanoma in situ. Some of the studies are somewhat alarming in the medications increasing risk of skin cancer. Is this a concern given my history?
4. Those of you who have had strictures, what do the symptoms feel like? I'm wondering if my "gallbladder" issue is really just a mild stricture? Would this be missed on a small bowel follow-through?

Thanks for bearing with me in this long post and thanks in advance for any input you might have. I'm thankful for this forum and have found it immensely helpful already.
-Holly

 

[Lady Organic]

Hi and welcome to the Forums Holly!
has the fistula been diagnosed? Humira is good too for fistulas, Remicade would be slightly better. Humira is user friendly, at home self-injection. Remicade requires a trip to a medical center every month for the infusions.
Definately see a rheumy, considering your symptoms and familial history. It is possible to have multiple chronic diseases. Joint pain symptoms are often occuring in IBD, as an extra-intestinal manifestation. It may be only that, hopefully.
Humira and remicade are both used in RA, if needed.

 

[fish]

Holly - have had somewhat similar experience. Very atypical in my symptoms (initially eye issues, rash on legs, pain in hips, lower back, ribs/sternum and arthritis overnight in feet/hands) but no bathroom issues. Diagnosed with Crohn's for same reason as you - ulcers in TI. I fought the diagnosis for months as I did not have the bathroom issues and all my labs, MRI's, etc. always looked normal no matter how much pain I was in. Started remicade (TNF inhibitor like Humira). It "worked" sort of for a couple of years. Greatly decreased pain in hips, feet and reduced pain/pressure in ribs. Did not, however, allow me to return to my normal levels of activity. Was a tri-athlete who swam, ran and biked multiple times weekly. Remicade allowed me to continue to swim and do fast, hilly walks.

Ankylosing spondylitis (AS) is another potential cause of ulcers in TI. I'm pursuing that thought with a rheumatologist but it is a hard diagnosis to get and it seems there are many rheumatologists that are not truly up to speed on latest on AS research/facts (for instance they use to say that AS was a man's disease and would not take too seriously women having it). TNF-inhibitors are used to treat Crohn's and AS so my first rheumatologist's thought process was "well if you have AS remicade is the treatment anyway so why worry about what is the real cause of you pain?" I'm no longer with that doctor.

Anyway, to your original question, AS is also considered a cause for ulcers in TI and could be diagnosed by a rheumatologist. Here is a link to an article that details other potential causes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/
Abstract
Ileitis, or inflammation of the ileum, is often caused by Crohn’s disease. However, ileitis may be caused by a wide variety of other diseases. These include infectious diseases, spondyloarthropathies, vasculitides, ischemia, neoplasms, medication-induced, eosinophilic enteritis, and others. The clinical presentation of ileitis may vary from an acute and self-limited form of right lower quadrant pain and/or diarrhea, as in the majority of cases of bacterial ileitis, but some conditions (ie, vasculitis or Mycobacterium tuberculosis) follow a chronic and debilitating course complicated by obstructive symptoms, hemorrhage, and/or extraintestinal manifestations. Ileitis associated with spondylarthropathy or nonsteroidal anti-inflammatory drugs is typically subclinical and often escapes detection unless further testing is warranted by symptoms. In a minority of patients with long-standing Crohn’s ileitis, the recrudescence of symptoms may represent a neoplasm involving the ileum. Distinguishing between the various forms of ileitis remains a test of clinical acumen. The diagnosis of the specific etiology is suggested by a detailed history and physical examination, laboratory testing, and ileocolonoscopy and/or radiologic data.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

 

[Himalhojo]

Holly - have had somewhat similar experience. Very atypical in my symptoms (initially eye issues, rash on legs, pain in hips, lower back, ribs/sternum and arthritis overnight in feet/hands) but no bathroom issues. Diagnosed with Crohn's for same reason as you - ulcers in TI. I fought the diagnosis for months as I did not have the bathroom issues and all my labs, MRI's, etc. always looked normal no matter how much pain I was in. Started remicade (TNF inhibitor like Humira). It "worked" sort of for a couple of years. Greatly decreased pain in hips, feet and reduced pain/pressure in ribs. Did not, however, allow me to return to my normal levels of activity. Was a tri-athlete who swam, ran and biked multiple times weekly. Remicade allowed me to continue to swim and do fast, hilly walks.

Ankylosing spondylitis (AS) is another potential cause of ulcers in TI. I'm pursuing that thought with a rheumatologist but it is a hard diagnosis to get and it seems there are many rheumatologists that are not truly up to speed on latest on AS research/facts (for instance they use to say that AS was a man's disease and would not take too seriously women having it). TNF-inhibitors are used to treat Crohn's and AS so my first rheumatologist's thought process was "well if you have AS remicade is the treatment anyway so why worry about what is the real cause of you pain?" I'm no longer with that doctor.

Anyway, to your original question, AS is also considered a cause for ulcers in TI and could be diagnosed by a rheumatologist. Here is a link to an article that details other potential causes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/
Abstract
Ileitis, or inflammation of the ileum, is often caused by Crohn’s disease. However, ileitis may be caused by a wide variety of other diseases. These include infectious diseases, spondyloarthropathies, vasculitides, ischemia, neoplasms, medication-induced, eosinophilic enteritis, and others. The clinical presentation of ileitis may vary from an acute and self-limited form of right lower quadrant pain and/or diarrhea, as in the majority of cases of bacterial ileitis, but some conditions (ie, vasculitis or Mycobacterium tuberculosis) follow a chronic and debilitating course complicated by obstructive symptoms, hemorrhage, and/or extraintestinal manifestations. Ileitis associated with spondylarthropathy or nonsteroidal anti-inflammatory drugs is typically subclinical and often escapes detection unless further testing is warranted by symptoms. In a minority of patients with long-standing Crohn’s ileitis, the recrudescence of symptoms may represent a neoplasm involving the ileum. Distinguishing between the various forms of ileitis remains a test of clinical acumen. The diagnosis of the specific etiology is suggested by a detailed history and physical examination, laboratory testing, and ileocolonoscopy and/or radiologic data.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

Hello Fish,
Thanks for your reply. I’m sorry to hear the Remicade’s effectiveness decreases for you. I’m quite active as well and find some of the limitations frustrating. I have done some reading on AS and have wondered if that might be at play. May need to schedule with a rheumatologist! I found this article helpful:https://badgut.org/information-centre/a-z-digestive-topics/ibd-and-arthritis/.