Being treated for IBD without a diagnosis?

[Keralin]

Hi all! Just out of curiosity, has anyone had their GI doc put them on meds to treat Crohn's, without actually being diagnosed?

My colonoscopy was mostly okay, with some irritation/bleeding around the appendiceal orifice, and my upper endoscopy showed patchy gastritis and a couple of gastric polyps which were removed (h.pylori neg, as well). Neg Abdominal CT with no significant inflammation. Normal Gastric Emptying Study. All of my blood work has come back within the normal range, including ESR. The exception is my blood serum protein has been flagged as high every single time of the 3 times tested.

I swallowed a pillcam last week, and GI Doc called me on Saturday (weird right?!) to let me know I have about a dozen ileal ulcers, which leads him to believe Crohn's is the likely culprit, but he doesn't want to diagnose me with Crohn's based on my blood tests being normal.

I have been experiencing abdominal pain, loss of appetite with nausea and occasional vomiting, loss of weight (at this point I'm about 20 pounds underweight), and persistant D with a lot of mucus.

Anyhow, he told me to come into his office this morning and he'll start me on Pentasa and Entocort. Is this unusual even though I haven't been officially diagnosed with anything?

 

[nogutsnoglory]

I had no trouble getting diagnosed but I know many do and have seen countless undiagnosed users here post about taking Mesalamine or steroids. I don't know if that's the right way to handle the situation or standard but its certainly happening a lot.

 

[valleysangel92]

Hey, welcome to the forum

It seems fairly common for doctors to trial someone on IBD meds before they have been officially diagnosed. It can be tricky to pin point the exact cause of inflammation and symptoms, especially as tests are often inconclusive or contradict each other. A lot of GIs will take the approach of a "working diagnosis" rather than a formal one, where they will treat for a condition and see if there is an improvement. If the condition improves, they may decide to make a formal diagnosis based on this, or just continue to treat for the symptoms and clinical presentations of the individual patient.

Crohns is a very diverse illness and it can be difficult to establish a set criteria for diagnosis as each person will present very differently based on their current lifestyle, where the disease is, how severe it is, how long its been active and lots of other things.

 

[dannysmom]

My son tried some Crohn's medications with a questionable diagnosis. They did not help but I am happy we were given the opportunity to try them. I hope they help you.

 

[Keralin]

Thanks for the replies! The more I read, the more I realize how differently this disease manifests itself and affects people. My doctor said it's very tricky to diagnose in some. A person can have it and be severely inflamed, without having any symptoms, and another can have very little physical damage but feel like they've been hit by a bus, then run over by a train.

He told me he's fairly certain it's Crohn's, and based on how foul I've been feeling and the poor state of my ileum, wanted to start me on a heavy dose of Entocort and then start tapering me off of it and replacing it with Mesalamine. I'm a little apprehensive when it comes to pharmaceuticals, and I think he sensed that and gave me the option of starting with Mesalamine to see how that goes. If I find my symptoms continue to worsen, I'll get on the steroids. He sent me to the lab for the Prometheus IBD sgi test, and will discuss the results with me at my next follow-up visit.

I had a very active lifestyle (was training to run a half-marathon), and ate a whole foods, mostly plant-based diet leading up to falling ill a couple of years ago. I think that's my saving grace, but at the same time what's making it so difficult to pin down a diagnosis.

I'm also trying to get all of the necessary paperwork gathered up so my father can file with the VA that two of his children have IBD, if I do in fact have Crohn's. He believes his genes got all wonkered due to agent orange exposure during his tour in Vietnam. If at some point they decide to recognize that as a side-effect, we may be eligible for VA benefits. His VA advisor is the one who suggested it, so there must be some validity behind that claim. It would be nice to get a little help, but I think it's highly unlikely given the current economic climate.

 

[iriechic]

Keralin,

I'm also a SC native, grew up on Lake Murray. Sorry to hear you are dealing with IBD issues. I can commiserate! I had great success with Entocort last year, so don't hesitate trying it if needed. Then this yr I managed to get a nasty GI infection (C.Diff) and haven't thus far had luck with Entocort. My GI wants me on one of the stronger crohn's meds, although I have colitis. I hope you get your Prometheus results soon (my GI just ran similar/same test on me). Feel better soon!

 

[Keralin]

Well, it's official. I got coded for Crohn's disease last week, so no more "working" diagnosis.

This means I have to stop walking around in a state of denial . Having the healthcare provider say "It's likely you have Crohn's." is definitely not the same as hearing "You have Crohn's.". The range of emotions I feel is very conflicting. On one hand, it's nice to know...on the other hand, boo! Relief and despair at the same time. :frown:

 

[nogutsnoglory]

I can understand the mixed emotions but at least you finally can be treated for the right condition.

 

[aschei]

I'm actually in the same situation and starting prednisone tomorrow. No diagnosis or even a scopy. But the GI knew with my family history (grandma, uncle, and sister all have colitis) that when the symptoms flare/accelerate it would be time to get going and not waste any time. I hope things get better quickly now that you have the diagnosis