New here & newish to Crohns-

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New Member

Date Joined May 2010
Total Posts : 16
   Posted 5/15/2010 1:57 PM (GMT -6)   
This might be long, but, by all means skim if need be, or bear with me! If you get bored, I post my direct questions at the bottom!

I am a 26 male. Pretty thin, 5'11, 120 pounds. Long list of auto immune diseases, also have tested for HLA B27. Have had Iritis twice, been diagnosed with Ankylosing Spondylitis, and generally have sore joints, but haven't been diagnosed with Rheumatoid Arthritis (yet smilewinkgrin )

Last fall, I was visiting my girlfriend who at the time lived an hour away. We had drank pretty heavily that night and in the morning I felt an awful pain in the center of my stomach, pretty much riding the line directly under my rib cage and leaning to the left. I attributed it to overdoing it that night, but as the pain would linger, even when I didn't drink, I started to wonder if it could be something else. I guess it was in November/December I noticed blood in my stool. It was the first time I had ever seen it (and ironically the only time. I scheduled an appointment with my PCP, who in turned referred me to a Gastro. So right away he wanted to do a colonscopy/endoscope. I was down with that, as I was somewhat concerned (side note: MoviPrep is THE worst tasting substance Ive ever experienced.)

I had my colonoscopy the last week of January (this year). Following the colonscopy, the doctor informed me I had light ulceration in my ileum, which I understand to be on the lower right of your body, a generally mild case of Crohns disease. Well, actually he told my mother because I had been so nervous of the procedure he gave me twice the sedation meds and I was still in la la land. In retrospect I found this odd though since I NEVER had pain in my lower right quadrant. My prognosis was Pentasa, four times a day and be cautious of my diet and take note of things that bother it, aka, no more drinking.

I noticed the Pentasa made me nervous. Maybe it was me being nervous (I take Zoloft for anxiety AND depression), but in any case I reported to my doctor it did not make me feel right, and he moved me to Asacol HD. Why Asacol HD instead of regular Asacol, I will never really know, but he told me it was basically the same thing and was no different. (Which is ironic since it actually says ON the Asacol HD bottle, "Not bioequivilent to Asacol". But whatever. I took Asacol HD for about a month, but actually noticed this pain under my left rib and wrapping around to my back getting worse! I kept taking the Asacol HD though because I was just happy to find a pill that didnt make me nervous.

Last week, I had my follow up visit with my doctor. I told him I had been having pains under my left rib pretty badly (which I have had all along) but he attributed the worsening of it to the Asacol HD and then put me on Entocort EC. I took Entocort for a few days, when I really started noticing the pain under my left rib and back becoming unbearable. I actually thew up yesterday and called his nurse to gain guidance. She said stop the Entocort immediately (though I think it might have been working) and directed me to take Prednison 10mg/ 4 times a day and also prescribed me hydrocodone for the pain, which is ironic as well because my Gastro told me sepcifically he doesnt prescribe pain killers, but luckily when I called yesterday he was out of the office and his nurse had to consult with another doctor.

I am now holding my bag of pills, in decent pain, and I am scheduled for a CT scan on Tuesday.

Now, I must disclose, I was NOT thrilled when the nurse said Prednisone, because Ive heard nothing but bad things about side effects, one of which is nervousness, and I obviously get nervous to begin with. Also not thrilled about the fact that it lowers your immune system and lowers your ability to fight infection. For the time being I am still taking the Entocort, holding off on the pain meds until I REALLY need them, and looking forward to the CT scan on Tuesday, that it will shed some light on whats happening.

Basically after all of my typing, I have a whole host of questions and will be thankful to anyone here who has experienced Crohns and takes the time to offer insight!

1.) I find it odd that in my almost six months since showing symptoms of Crohns, I have had only one bloody stool, and hardly ANY diarrhea, is that normal?
2.) For people who have taken both Entocort and Prednisone, is it worth me taking Prednisone instead of Entocort? Will I get faster pain relief? Is it true that it causes anxiety, etc. I guess Im wondering if the potential side effects outweigh the good it can do.
3.) It looks as if messalamine based drugs arent going to do the trick for me judging on the hit and miss with both Pentasa and Asacol, and I am not thrilled about being on ANY kind of steroid for a long period of time, what other drug classes and/or choices do I have? Humira? Remicaid? Others?
4.) I am not 100% convinced that my pain under my left rib and back is Crohns. I have certainly read people with Crohns getting pains here, but I have had these pains (although lesser) since the beginning and when he did my colonoscopy, not once did he mention any ucleration or issue with my descending colon and the pictures from that area looked fine. What else could this be? Pancreas? Spleen?
5.) Being new to Crohns, I am not really sure what kind of pain is normal pain and what kind of pain is "rush yourself to the ER" pain. I will say that I dont feel comfortable on a daily basis, but my current pain seems to be increasing. It is a pressure type pain, under my left rib and making its way down to my pelvis along the left side, as well as running across the center of my back. Again, pretty odd when my doctor diagnosed me with Crohns in the ileum. Whats even worse is when I went to see him, he said, "Hey great to hear you no longer are having problem with your ileum". Um, I never was, thats where you supposedly found it, my pain has been under my ribs.

Ok, Ive talked enough for now, for anyone who reads my entire post, you are great! And for anyone who offers guidance by answering any or all of my questions, thank you so much! I wish all of you guys (and gals) the best!

Regular Member

Date Joined May 2010
Total Posts : 88
   Posted 5/15/2010 5:04 PM (GMT -6)   
I've had crohns for atleast 11 years and I have never once had a blood, but I constantly have D. Prednisone for the most part just reduces the inflamation that causes the pain, I also used to have horrible back pain, and it turned out that my intestines were crushing one of my ureters and thats why I had back pain, because my kidney was affected. I also hadain under my ribs and it was my stomach, and I usualy go to the er when my pain level goes out of the norm for me, but then again I may not be the best person to give advceon when to go to the er since i always wait til its really bad and end up in the hospital for weeks. You should talk to your GI about other medicines and you two can figure out what the best one for you would be. I hope I helped out alittle bit.
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 5/15/2010 6:22 PM (GMT -6)   
For me, the vast majority of my day-to-day pains come from gas. When it moves across certain areas, it can be incredibly painful. For me, it's usually on my right side just below the rib cage. When it's at it's worst, I apply some pressure to the area, and that makes it much more tolerable. If it doesn't go away (or at least move) after a bit, then it's not gas. If that's the case, I'd suggest visiting the doctor again and asking him... because each person experiences Crohn's in a different way, so what sounds like gas pain to me could be something worse, or nothing at all for you.

Humira and Remicade are both options, should they prove necessary. They are kinda heavy-hitters as far as drugs go, though, so most doctors will want to try as many lighter-weight drugs as possible before moving up to those. In my case, neither of those (or several others) worked well enough, so I'm between experimental drugs at the moment.

I don't recall ever taking Entocort, but I know I was on Prednisone. I don't think I had any side-effects, though this was 6 years ago and I wasn't on it for very long. Just enough to keep me from kicking the bucket, then get me on something else while I tapered off.

I have D on a regular basis. In fact, it's normal, well-formed poo that's irregular for me. Blood only shows up if I eat something that REALLY disagrees with my guts, like caffeine or Arby's. However, as I said, each person experiences Crohn's differently. Lack of D just means you spend less on toilet paper.
Diagnosed with Crohn's late December 2004. Narrowly avoiding a full-blown flare on Azathioprine (50mg daily).

Regular Member

Date Joined Apr 2010
Total Posts : 119
   Posted 5/15/2010 7:06 PM (GMT -6)   
Hello, I was told I had crohn's about 3 years ago when I went to my pcp because I had constant D. I had a colonoscopy 2 years ago and the GI doctor told me he didn't see anything but the blood test said I did have crohn's :-/. To make a long story short I ended up in the hospital (2 years ago) with severe inflamation and they almost opened me up for exploritory surgery but thank God they didn't and during my hospital stay they put me on Asacol and I couldn't eat at all so was getting everything through the IV. Anyway, over the last couple of years I have been on asacol and they tried me on entocort which made my D much worse and I couldn't control it at all so eventually was taken off. Being that I have been undertreated I deveolped a rectal abscess and now have a recatal fistula. Now the doctors are concerned :-/....I also get that bad pain that you describe and was scheduled to get an endoscopy and colonoscopy in April (last month). When they did the endoscopy they saw that I had mild inflamation of the stomach lining which is what causes the pain. I don't know how it showed mild because sometimes the pain is so bad. I think you should ask your doctor to do an endoscopy because maybe you might need nexium. I was told to take prilosec (it's over the counter) in the morning one hour before I eat. A colonoscopy will not see into your stomach. I also have, what I was told, severe inflamation in the ilieum (on the right lower side) but I don't have any pain there, I just can't stop running to the bathroom. I go back to the GI doctor this tuesday and suppose to start prednisone and 6mp. I am so scared about starting the prednisone because I suffer from sever anxiety and panic attacks and I don't want the steroid to make it worse and all i keep hearing is how horrible people feel on it regarding feeling anxious and not being able to sleep. Anyway, i am sorry I didn't mean to start rambeling (I have a habit of writing long post, sorry) but I do think you should ask your doctor about getting an endoscopy done or asking about prilosec (which is over the counter) and see if it starts to help. I definatly understand everything you are going through and hope you feel better soon.
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(

New Member

Date Joined May 2010
Total Posts : 16
   Posted 5/15/2010 8:35 PM (GMT -6)   
Thanks for everyone's comments so far, I very much appreciate it!
sweetnakira: Let me know how you handle Prednisone as it sounds like we both have big anxiety issues and a fear of taking Prednisone! Id be curious to know how you stomach it and I hope it works out OK!

Veteran Member

Date Joined Jan 2010
Total Posts : 8422
   Posted 5/16/2010 11:13 AM (GMT -6)   
I'll try to answer...

1) Non-bloody stools are normal in Crohn's; never having diarrhoea not so much. It's unusual but far from unheard of. A few tend towards constipation rather than diarrhoea.

2) Prednisone kicks in instantly (same day instantly in my experience) and can be a 'wonder drug' in the sense of inducing immediate remission. Entocort is a topical steroid, meaning it should only work where it's applied (the intestines). This makes its onset a bit slower, but it's still quite fast-acting (2-4 weeks to achieve the full effect supposedly, but if you don't see any change after a week I wouldn't be too optimistic). In theory, entocort has no side-effects but in reality it's still a steroid, some of it still gets absorbed into the bloodstream, and you no more want to be on it long-term than you do the pred.

One thing which seems to trap many people into taking pred long-term is that symptoms start to come back as soon as they taper and go below a certain dose; they then stay stuck at 20mg (or whatever) for a long time. I'm not sure what you can do about that, apart from ignore the returning symptoms and wean off the pred in its entirety regardless.

3) The main classes of drugs for Crohn's are the antiinflammatories (mesalazine, asacol, pentasa), the immunesuppressants (Imuran, 6-MP), the biologics or anti-TNFs (Remicade, Humira, Cimzia). If antiinflammatories don't work, try the immunesuppressants next. I've not had much luck with them but many do do well on them as a long-term maintenance therapy.

4 and 5) Pain is a minefield of confusion, that's about all I can say. Pain which radiates to the back could be gallbladder issues - almost anything really. I'm sorry I can't be more helpful than that :-/

Veteran Member

Date Joined Nov 2007
Total Posts : 4055
   Posted 5/16/2010 10:16 PM (GMT -6)   
I'm hoping that your CT scan sheds some light on all of this. I haven't heard of Pentasa or Asacol causing anxiety. The Crohn's diagnosis causes anxiety for sure! I'd hate to have you rule out the 5-ASA drugs based on anxiety alone (that's the Pentasa and Asacol), unless you are having other side effects. I tend to have constipation more then diarrhea. I can't detect blood in my stools, but when I get anemic I know I'm bleeding. It is so frustrating when you are in pain, and there are so many complicating's really hard to figure out. Try to stay patient...I know it is so hard to do. Good luck and let us know what your scan shows.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

Veteran Member

Date Joined May 2010
Total Posts : 8375
   Posted 5/17/2010 12:45 PM (GMT -6)   
Has anyone thought that the ankylosing spondylitis (AS) could be causing the rib pain?

I'm taking sulfasalazine for AS, on top of pentasa for Crohn's. I'm B27 negative.

Oh, and just for additional data, I become euphoric on pred. it's one of my favorite meds. ;-)
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