New to Crohn's

Hi all,

I am new to this board and new to Crohn's Disease.  I had a colonoscopy today and the end result was there are ulcers in my Ileum with the end result more then likely being Crohn's.  I still need to go through another CT scan and a Capsule Endoscopy. 

It all started in March when literally out of nowhere I started got pain in my lower right abdomen.  I had a CT scan and they noticed some enlarged lymph nodes.  At the time the doctor told me it could be Lymphoma or Crohn's since enlarged nodes can be present in Crohn's also.  Other then the pain I had no symptom of either disease and still don't...just the pain.  I have not had any weight loss, diarreha, etc.  This is the odd part of the diagnosis.  Maybe it's still early...I don't know.  Like I said the pain just showed up one day and never really left.  It doesn't really affect my day.  Some days better some days worse.  I does tend to get worse in waves and then subsides.

The doctor is already talking steroids which I doubt I will go for.  I have seen other people go on steroids and they are never the same.  Besides, who needs side effects worse then the actual condition.

Anyone have the same symptoms I am describing.  No diarreha, weight loss, etc? 

Thanks,

Jeff

 

Hi Jeff, It sounds like you may have IBS, With IBD there is weight lose, diarrreh, and sometimes
blood in the stool. Have your doctor check for IBS.

Hi Jeff Welcome to HW and I hope they find out what is going on with you. lol gail

Don't rule out the Prednisone right off the bat. As much as I hate the drug (and I really, really do) it has it's place in treatment as long as you and your doctor understand it's to be used temporarily to try and get an acute flare under control. It works faster than any of the other drugs, and getting inflammation under control is the main thing here.

Also, weight loss and diarrhea don't always happen. There's lots of us "chubby" crohnies and lots of crohnies with constipation.

Good luck, and let us know what happens.

Hi Jeff,
It does sound like Crohn's -- ulcers in the terminal ileum plus enlarged lymph nodes seen on CT scan. That matches exactly what was first found in me (I now also have some mild inflammation in my colon). I went for about 4 years with on/off abdominal pain but no diarrhea, then had diarrhea for a while but no pain! Now I don't have either, just a lot of fatigue and no appetite! So the symptoms can be different for every person, and they can change over time for you too.

Since yours in confined to the terminal ileum, and you're not in too bad of shape, consider skipping prednisone (the systemic steroid with lots of possible side effects), and instead try Entocort, a relatively new steroid that works on the terminal ileum without a lot of the overall side effects of prednisone. Lots of people on here have taken Entocort, including me. Steroids like prednisone should be used only when you're in a bad flare (really bad diarrhea or vomiting or weight loss or things like that).

Also, along with the Entocort (which is typically used for a few months), you should consider starting a "maintenance" medication for long-term use.  Many people either start with Asacol or Pentasa (mesalamine medications), or step up to immunosuppressants like 6-mp or azathioprine.  You can discuss this with your doctor.

Post Edited (beave) : 10/5/2007 1:53:38 PM (GMT-6)

These comments are very interesting to me. I also started out like Jeff, woke up suddenly one morning with significant lower right abdominal pain which continued on and off for years, although at a lower intensity. YES, I did have antibiotics- about 1 month before this happened I had been treated for a UTI with sulfa (which I am now allergic to) My gyn (before managed care, in those days many women only had gyns, not primary care doctors) sent me to a gi doc who laughed because I had no gi symptoms. Just pain. He did agree to do a colonoscopy which was normal. Every doctor I saw since then grilled me about diarrhea, mucous etc, including the rheumatologist who treated me 4 years ago for inflammatory arthritis of my knee. It was after that the gi symptoms started and like someone said here, started, stopped, on and off. The pain would come and go also. All tests normal.

My gyn insisted I probably had crohn's. 10 years later everyone else is saying the same thing. Unfortunately the gyn is dead so has no idea he was right.

At my last gi visit the NP was telling me that it is quite common for crohn's to have an unusual presentation

hi Jeff and welcome! I woke up one day at 46 years old with upper right pain, was quickly diagnosed with crohns due to ulcers in the TI and inflammation, was put on all the meds, now a year and half later I still have pain daily and no meds have helped and they are unsure about the diagnosis, so sometimes things bump along with crohns. I never have had a minute of D. I took pred and had little side effects. I had weight loss, but that is because I stopped eating because it hurt to eat. I am back eating and it still hurts.
keep us posted and keep asking questions and probably another test or two will help you know what is happening.

Hi Jeff,

I was diagnosed in april of this year but i actually went to the doctor in 2004 for severe cramps.  I don't recall having much "d" but the cramps put me in the floor.  all i could do was roll up in a ball and cry.  My doctor diagnosed me with ibs but then february 2007 i had a horrible flair up.  I did have "d" this time and weight loss (mostly b/c it felt better not to eat)and that's what prompted me to go to doctor and take it more seriously and that's when i found out i had crohn's.  I think crohn's just affects different people in different ways.

God Bless

christina

welcome Momkins,
you will find here that people's experiences vary widely, and the first few months or year are often a rollercoaster of meds, tests, and confusion. I can't tell you how things will go, but I will say to keep asking questions and hanging around here. as for energy, mine came back when I started eating again, as I lost lots of weight on an already tiny body when I was first sick. if they start helping you, you will have more energy. yp