Could use some input - going a little nuts

[mainekitty]

Hi all,

I'm new to the forum, but have had Crohn's since I was 16 (1997). I have been pretty healthy for the past 3-4 years.

I generally maintain pretty well on Pentasa alone, but went off it for financial reasons (long story) around Jan 2012, and then went back on about 2 months ago, when I visited the gastro because I'd started having symptoms (occasional diarrhea, some right abdominal pain).

Then about 2-3 wks ago the D got worse, so that it was daily, multiple times a day, and I started having really bad lower back and lower abdominal pain when I had a BM, and afterwards. The lower back pain pretty much doesn't go away. The pain in my right side continues as well - though this I would describe more as "nagging" (btw this is the same spot it hurt when I had inflammation confirmed in the terminal ileum about 6 years ago). So went back to the gastro, who said, let's do some stool samples to rule out a virus, and then I'll put you on Entocort.

Well, of course, from that day (Wed) on, I've not been able to go at all, and my stomach is just getting bigger and bigger, despite eating fiber and trying to move around as much as possible (tough to do a lot of walking, because my lower back and abdomen hurt a lot). I've called the gastro again today and she said to just start the Entocort and to take a laxative.

My question - is the laxative a good idea, when I've recently been having so much D? Also - should I be asking to do more tests before going on a steroid?

Sorry if these seem like weird, paranoid questions, but my Crohn's only gets bad every few years, so I always second-guess my symptoms, doctors, everything when I flare - it really does a number on me psychologically. Like, I'm glad that the doctor isn't questioning my symptoms (I've had them do that before, so that's not nice either) but I'm also worried that she's treating it like a bad flare and maybe it's just something else? This is just the first time that a doctor has wanted to put me on a steroid before seeing the inflammation firsthand (in a colonoscopy or lab test).

See? Nuts.

 

[kllyeve]

Are you nauseous or vomiting? Is the pain sharp or coming in waves?? You might be experiencing a partial obstruction if the sypmtoms start looking like those I listed. A good general rule of thumb is - if the pain is different, or stronger or in a different place than usual or nausea and vomiting enter the picture - get to an ER and get checked out.

The Entocort is to reduce the inflammation that could be causing the possible blockage. So yes, I would take it. I would take a stool softener that would help things move easier through an area of inflammation. Drink lots of water also to help keep the stool soft.

Since you got worse on the Pentasa, one of the next drugs up the line is Entocort. And from the worsening symptoms, the DR can tell you need a stronger drug than you were currently taking without have to do a colonoscopy. Besides which you'd only suffer longer waiting for the colonoscopy to be scheduled.

Hope you feel better soon.

 

[mainekitty]

The pain is coming in waves and my appetite is diminished considerably. No nausea or vomiting (actually, I did have this a couple of months ago when I first went to her after having stopped the Pentasa, but then the stuff in my lower abdomen started and I sort of forgot about it).

I appreciate your quick response to my post. I just get overly anxious about these things - especially taking steroids. But you're right - I'm sure that it will help, and I should just bite the bullet. Drinking lots of water already... so anxious about stool softeners, because I haven't forgotten about how bad the D was only a few days ago (and how painful it was after going)... does anyone know if they can make D worse after being constipated, or am I being overly paranoid about this?

 

[kllyeve]

Well, stool softeners are designed to draw more water into the bowel to keep the stool soft - so they might make the diarhea worse. I think that if you have had such bad D, your probably just emptied out and there is just nothing in your bowel and thats why you are not going. IMHO, I'd avoid the laxative if you are already in pain, it might just make the cramps worse.

If the pain is coming in waves, I'd consider going in and having it looked at - they can do an xray or ultrasound to determine if there is a blockage or partial blockage. When I had partial blockages, the relaxation I got from the wonderful pain killers I got at the hospital were often enough to let the bowel relax enough to get rid of the obstruction.

 

[mainekitty]

Update:

I've been taking the Entocort for four days now, and laxatives and stool softeners for three. I've now been constipated for a week. Still nothing, and needless to say I'm uncomfortable. I've never had constipation be a Crohn's symptom like this for me before... can anyone tell me what their experience has been? Should I be calling the doctor or holding out with the laxatives and steroids a little longer?

Despite this, the pain hasn't really changed. At times it's bad, but mostly it's uncomfortable. The severe pain before was mostly during going and after going #2, but since that's not happening, the worst pain comes and goes whenever now.

The problem is - I'm on vacation right now, so not really easily accessible to my Dr.

Grr - I hate this disease!

 

[JDTM]

Hey buddy. The Entocort takes a while to "kick in" in my experience, and I feel like it's the same for a lot of other people from what I've read on here. I am tapering now, and I feel like I only really started to feel a difference around 2-3 weeks of the full dose, personally. I can't speak to the constipation though, so someone else will have to offer you advice there. Sorry I can't be of more help!