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js4574
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/4/2007 9:53 PM (GMT -7)   
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
 
 

Cobra
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/5/2007 3:00 AM (GMT -7)   

Jeff,

Sorry to hear you have not been keeping well. I am probably not the best person to offer any advice as I have not been officially diagnosed with Crohns. My Dr suspects thats what I have and I go for a colonoscopy on Tuesday. I asked the Dr can I have crohns without running to the toilet all day every day. He said that everyone has different effects.

It is also possible your diet and lifestyle plays a part. If you live on junk food and are stressed out alot, chances are you would have IBS anyway. If you live and eat healthy chances are you would not have these symptoms as bad.

Sorry I cant be more helpful.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/5/2007 3:07 AM (GMT -7)   
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, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 10/5/2007 3:12 AM (GMT -7)   
Hi Jeff~
Welcome to Healingwell!  You could very well have Crohn's.  I assume that your doc took biopsies during the scope....the results of those should tell you more.  Although I did have "D" and lose weight during my initial flare, that is not the norm for me.  It is not the norm for a lot of us.  I have more of a tendancy to be constipated, and I can't lose weight to save my life!!!
 
 
Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
Help support Healingwell!!!
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/5/2007 3:24 AM (GMT -7)   
Hi Jeff Welcome to HW and I hope they find out what is going on with you. lol gail

js4574
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/5/2007 4:55 AM (GMT -7)   
Thanks for all the comments. I've been reading through the other threads and alot of websites and other then the pain I don't really have any other symptoms which I guess is a good thing. Maybe it's early. Like I said, this started in March. The doctor did take a biopsy.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/5/2007 7:31 AM (GMT -7)   
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.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 10/5/2007 7:34 AM (GMT -7)   
Hi Jeff,

I've got Crohns. Got the diagnose in june this year. Didn't have diarrhea in the beginning. A lot of Crohnies don't have diarrhea. I only had the pain, and it started some years ago. I have more or less pain each day. Now I also have had diarrhea, it started this summer. Some people cant stay off the loo, and some have trouble going there regularly. So is Crohns. As for the weight: even there we are different, some do lose, and some don't lose at all.

From Ingrid
 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/5/2007 12:50 PM (GMT -7)   
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)


js4574
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/5/2007 1:43 PM (GMT -7)   
Is there any correlation between taking antibiotics and Crohn's. Like I stated this just appeared out of nowhere. A few weeks prior I was on antibiotics for strep throat. I thought I had read somewhere that certain antibiotics might cause a flare up. Ya know, the weight loss wouldn't be a bad thing. I need to drop about 50lbs.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/5/2007 2:20 PM (GMT -7)   
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
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/5/2007 2:22 PM (GMT -7)   
I just read Jeff's post more carefully and noticed the ulcers and lymph nodes. I had nothing like that, all normal. A CT Scan was also normal
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 10/5/2007 3:10 PM (GMT -7)   
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.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


js4574
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/6/2007 9:03 AM (GMT -7)   
Here's another question. Does anyone notice more pain when sitting or laying down. When I stand I usually don't feel much, maybe a slight twinge. But when I sit...forget it. That's the worst. And I sit ALL DAY LONG at work.

chrissy27
Regular Member


Date Joined Oct 2007
Total Posts : 67
   Posted 10/6/2007 10:35 AM (GMT -7)   

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

27 yr old female, diagnosed with crohn's colitis with stricture of the colon april 2007--still new to this whole thing--
 
medications:  Imuran 50 MG, Lialda 1.2g


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 10/7/2007 11:29 AM (GMT -7)   

Hi everyone,

I was just diagnosed with Crohn's Disease on Friday and I've been having quite a pity party.  I'm worried about this interferring with my job.  I am a preschool teacher.  Are most people able to function normally with the exception of a few days here and there?  Also, my doctor is switching me from Asacol to Pentasa.  He says that the Asacol is only able to reach half of the area that is affected.  Has anyone else been switched and does it help?  My doctor also said that once he gets the Crohn's under control I'll have more energy and probably won't get sick as much.  Has anyone else noticed more energy with treatment?

 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 10/7/2007 12:55 PM (GMT -7)   
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
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.

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