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New Member Diagnosed "Most Likey Crohn's"

C

chuggingalong

Hi All,
I am a new member here. I am scared. 34yr Male.

Diagnosed as "most likely Crohn's."

Quick history leading to diagnosis - Have taken pain killers for migraines for years, on and off anti-depressants for extreme anxiety attacks.

A year ago after taking antibiotics I started to have bad constipation (which I had off and on for years prior due to pain killers I'm assuming.) Bad heartburn and gas trapped pains in chest and back which lead to a blood test showing slight anemia which explained the exhaustion.

This lead to upper endoscopy which showed normal.

Colonoscopy showed normal Bowel, but with ulcerations at beginning of the Small Intestine "most likely due to Crohn's." Biopsy came back stating "chronic active ileitis most likely due to Crohn's." I am going in for the capsule endoscopy in 6 days. A gastro nurse gave me these results and informed me that I have been prescribed Lialda. I haven't taken it yet.

Since the diagnosis says "most likely due to Crohn's," do I have any hope that it is not Crohn's? I have been in shock, depressed, angry, crying, etc for days since the diagnosis. I have read horrible reviews of immunosuppressants (liver failure, dying from depleted immune system, etc.). Rather than the Lialda, I'd honestly rather take Prednisone. I've had it before for pneumonia and didn't die... I am going to drastically change my diet to the recommendations I have been reading and make lifestyle changes. I'm hoping this does the trick.

I'm so scared.
 
Scipio

Scipio

Well-known member
Location
San Diego
Well, pretty much all of us here have been in your shoes, so we certainly understand your apprehension. And I'm here to tell you getting diagnosed with Crohn's is never good, but it's better to have a firm diagnosis than to have these symptoms and difficulties and not know why. With a diagnosis you and your doctor can plot a path forward that will get you into remission and abolish or at least significantly decrease those awful symptoms and help you live a normal life.

It is still possible that it's not Crohn's. Other things such as celiac disease can cause ulcers in the small intestine. But given your pathology report it's probably unlikely to be something other than Crohn's. I'm not sure what more the capsule endoscopy will provide in making a diagnosis. The ileal ulcers have already been seen by regular colonoscopy, and the pathology says Crohn's. The capsule endoscopy can tell you how extensive the ulcers are - how far upstream they go. But I'm not sure what they are looking for that could change the diagnosis to something other than Crohn's.

In any case hang in there. There is a lot that can be done for Crohn's and more new treatments coming along all the time. Plus there are a lot of sympathetic, helpful, and knowledgeable people here who are on your side.
 
C

chuggingalong

Scipio said:
Well, pretty much all of us here have been in your shoes, so we certainly understand your apprehension. And I'm here to tell you getting diagnosed with Crohn's is never good, but it's better to have a firm diagnosis than to have these symptoms and difficulties and not know why. With a diagnosis you and your doctor can plot a path forward that will get you into remission and abolish or at least significantly decrease those awful symptoms and help you live a normal life.

It is still possible that it's not Crohn's. Other things such as celiac disease can cause ulcers in the small intestine. But given your pathology report it's probably unlikely to be something other than Crohn's. I'm not sure what more the capsule endoscopy will provide in making a diagnosis. The ileal ulcers have already been seen by regular colonoscopy, and the pathology says Crohn's. The capsule endoscopy can tell you how extensive the ulcers are - how far upstream they go. But I'm not sure what they are looking for that could change the diagnosis to something other than Crohn's.

In any case hang in there. There is a lot that can be done for Crohn's and more new treatments coming along all the time. Plus there are a lot of sympathetic, helpful, and knowledgeable people here who are on your side.
Click to expand...
Thank you for the reply. All of your statements do make sense, and I greatly appreciate the support I see here.

All of the different treatments scare me aside from the dietary and lifestyle changes.

I hope for happiness and healthiness for you and everyone here.
 
Scipio

Scipio

Well-known member
Location
San Diego
One more thing, If the capsule endoscopy shows that the inflammation is pretty much confined to the ileal region, you may wish to discuss with your doctor the possibility of taking Entocort (budesonide). It's a steroid like prednisone but with much lower side effects. And it's probably a lot better than Lialda for inducing remission in Crohn's. All the mesalamine derivatives such as Lialda work a lot better for UC than they do for Crohn's.

But whether it's prednisone or even budesonide, you and your doc will need to come up with a strategy to eventually get you off of steroids and on to a maintenance medication such as immunosuppressants and/or biologics. Steroids have the worst side effects of all the Corhn's medicines, so you cannot stay on them permanently.
 
C

chuggingalong

Thank you for your advice Scipio. I genuinely appreciate it. :)

I will definitely take that advice with me for the capsule endoscopy results. I too remember reading, I believe on a reputable site, that Lialda did not work great for ileal crohns.
Maybe I will get lucky and go into remission and go flare free like some of those people I've read about.
 
T

Tuff

Welcome, and sorry you had to find us. We can all relate to the feelings you are going through right now. Your diagnosis is new, and you must be feeling pretty raw right now. We've all read about the side effects of the different medications, but the reality is, you have to get on something that will keep you in remission to minimize the damage that the disease does to the body. Diet and lifestyle changes are all good, and will probably help you in staying in remission, but they are not going to heal existing ulcerations. You want to get those healed up so that you don't end up with complications.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304 Complications are listed at the bottom of this article.
I hope you have family and friends you can lean on and talk to. It will get better, we're all in this together.
 
Lynda Lynda

Lynda Lynda

Member
chuggingalong:
I was recently diagnosed with Crohn's but because of everything I learned on this forum I was prepared and informed.
I have read so many posts here and have learned more here than in the past 20 years. ( My gut has been sick since 1997. And diagnosed with UC in 2006. )
I am actually looking forward to the Humira, 6-mp pill and the dietary and lifestyle changes. I want to feel better.

Take Care and Keep In Touch. ❤

Lynda
 
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