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DIAL 05-01-2013 07:19 AM

new to Crohns
I was just diagnosed with Crohn's

I had a horrible night. I spent hours on the toilet in horrible pain. it comes in waves. It feels as if I am backed up. When it comes, the stool is forced out in small ribbons and is bloody. Its so powerful, I get hemorrhoids and fissures.

I have been having this for about 3 months untreated. I am going to start Asacol tomorrow. I am bit nervous about these drugs, but hopefully they will help. It appears my issues are in my bowl.

I hope there is no serious damage from going this long without medication. Does this all sound familiar to you guys?

My colon is in massive pain. One question I have is when do I need to go to the hospital? Is this life threatening? I called my doc but he said im probably just backed up. I would hate to ignore an issue that needs hospitalization.

thanks guys

ladybud 05-01-2013 08:07 AM

Re: new to Crohns
Your symptoms are very charachteristic of Crohn's, and I find it hard to believe your Dr dismissed this as just constipation. The asachol should definitely help, but it will take awhile, like days to weeks depending on how bad the inflammation is. Is your Dr a GI specialist? If not, you certainly need one, and need aggressive treatment. I would ask for a GI antispasmodic for the cramps. I would also ask for a dietician's consult to go over dietary aggravants to avoid right now and in future. You might find it helpful at the beginning to keep a food journal to track what foods might make it better/worse, but right now, a soft. low fiber bland diet would be best, and the dietician can go over specifics with you. Asachol is an anti-inflammatory agent, and will be needed long term for prevention of flares. Prednisone is sometimes used initially to get the inflammation under control quickly and I would ask your Dr about that. Let him know about the bloody, ribbon-like stools and severe pain so he knows how miserable you are with this. Crohn's can cause very serious complications and shouldn't be treated lightly.

DIAL 05-01-2013 08:55 AM

Re: new to Crohns
Sorry, I should be more clear. Blood marker tets confirmed I have crohn's. My DR is a GI specialists.

I called the on call Dr last night because of the intense and forced bowl movements. The pain was severe as well. The Dr on the phone said he didn't think it was an ER issue, and that he thinks I am backed up, most likely because of inflammation, and now its forcing its way out.

I have Rewasa as well, however he wants me to wait for an X-ray of the bowel to make sure there are no obstructions before I stick an enema stem up there.

quincy 05-02-2013 01:26 AM

Re: new to Crohns
So, let me get this straight. your doc initially said colitis, but no UC or CD. Now a blood test says CD?
To be truthful...there's NO blood test that can be definite about CD or UC.

Where exactly in the colon is your inflammation...and didn't he recently do a c-scope? The ribbon stools are classic of rectal inflammation.

What's the dosage of Asacol? 800mg pills? How many daily?

I'd put off the prednisone until you've tried the 5ASA (mesalamine) oral/rectal.

For cramping, you can ask your doc for an antispasmodic...I use dicyclomine which helps a lot. But for now, your cramping would probably be because of no treatment and continuing inflammation.

Do you have a copy of your results as of yet...and the blood tests as well? If not, I urge you to have them for your records and research.


DIAL 05-02-2013 02:51 PM

Re: new to Crohns
yes, I do have the labs. At first, they said the biopsies were inconclusive, but I for sure had colitis of some sort. This was evident. My doctor sent out my blood to a specialty lab called Prometheus IBD SGI Diagnostic. They ran my blood checking for markers, i.e. specific antigens. The results came back consistent and positive for Crohns.

Based on the Colonoscopy report, showing my colon inflamed, and the the blood marker test, I was diagnosed with Crohns Colitis.

I asked how accurate these test are, and he assured me they were about 95% accurate, and felt it was clear based off what he was seeing. He said I could do another Colonoscopy, but that would be unnecessary hardship in his opinion.

I tried Rewasa last night, and had a bad reaction to it. I just left the hospital. I can pretty much say with certainty that I am intolerant to mesaline. I had watery diarrhea all night after taking the suppository along with nausea. Then, I began to run a fever and feel weak and dizzy. I went to the ER scared I had an infection in the GI track. While there, a few hours later, my fever went away. They gave me no fever reducer while I was there, only saline and some anti nausea medication.

All of these are listed in the the medication side effects, and only came on after taking it, then the fever left after a few hours of coming on.

quincy 05-04-2013 12:36 PM

Re: new to Crohns
I think you're jumping to an ultimate conclusion about the intolerance to mesalamine....could have been a coincidence, but it would be good for you to try it again.

How much asacol are you taking?

Is the Rowasa 4g or 2g dosage?

The Prometheus is NOT a 95% positive regarding diagnosis....I talk to a LOT of people who have had it done with multiple results, there are doctors and medical institutions who refuse to use it. do have an IBD, regardless if it's CD or UC, you will need medications. I'm not saying you don't have CD.....but with the doctor's statements initially, and for him to rely on the Prometheus, I think you actually need another opinion.

I urge you to try the rectal mesalamine again when you're more settled, but in the meantime, ask your doc for you to try a steroid enema to help get the rectal/sigmoid inflammation under control.

Where exactly did it state your inflammation is located...throughout your colon?


DIAL 05-05-2013 04:55 AM

Re: new to Crohns
it seems to be only in my colon, however Im starting to get pain in my lower right abdominal quadrant, and just left of my belly button as well. I guess I could always go to a second doc.

I find it odd that as as soon as I took the 4gram dose of rewassa, I got cramping, nausea, water diarrhea, and then a fever. I then got very weak and dizzy. I thought the fever could have been an infection so I went to the ER. about 2 hours later, the fever went away on its own, no drugs. Blood came back normal with no signs of fever, and CT showed inflammation in the colon, but that's it. The pain on the lower right radiates to my lower right back as well.

After not taking any more Rewassa, I have no more diarrhea, but I do have urgency with little to no stool, and mucus.

The prednisone they want me to take is of great concern for me, because I have had under performing adrenals with low cortisol in the past, and often do not handle steroids well. I could look into hydrocortisol suppositories, although that can give me similar issues....

quincy 05-05-2013 10:56 AM

Re: new to Crohns
Are you still taking the asacol?


DIAL 05-06-2013 05:16 AM

Re: new to Crohns
no, I tried the rewassa first, but stopped after the bad reation. Im not going to take oral mesilamine when I had a bad reaction.

DIAL 05-09-2013 06:30 PM

Re: new to Crohns
Anyone have any luck with VSL#3?

quincy 05-10-2013 12:08 PM

Re: new to Crohns
I know of a lot of IBDers who use VSL#3...some continue to use it, others have switched to other probiotics. For me, I'd not use the powder, I'd try the capsules first. I'd also take them on an empty stomach at night and not during the day...reason for me would be discomfort, and I've read that they're better to take on an empty stomach during a quiet time (which would be sleep).

But the opinions vary....trial and more trial...

Everyone should be on probiotics...but not all people's body agree with all probiotics strains.

Keep us posted on how you do on them.


DIAL 05-13-2013 11:10 PM

Re: new to Crohns
thanks for the input quincy, so far I have only taken two a day, and I handle it fine. I guess I should increase the dose. how many do you take?

quincy 05-14-2013 12:51 PM

Re: new to Crohns
I use different probiotics, not the VSL#3. You're using 2 packs daily? I think the dosage for flaring is 4 packs daily? At least that's what I read from others.

What other changes have you made regarding diet? I would also suggest adding a fibre supplement with your meals (start slow)...that can help feed the probiotics nicely as well).

Keep me posted how it goes.


DIAL 05-14-2013 09:05 PM

Re: new to Crohns
I have been taking two pills daily, but it sounds like I need to up that....bottle said 2-8 so I figured I would start low. I am also going to try Apriso, perhaps I will handle it better then Rewassa. I know this is a long shot, but I am also considering Nopalea. Its a natural anti-inflammatory from the prickly pear cactus.

quincy 05-15-2013 09:15 AM

Re: new to Crohns
Yes, it's a longshot, it won't replace the meds. If it was a help or replacement, we'd all know about it. But it won't hurt you unless you're allergic to it. You might get gas or discomfort...change the time of the day of when you take it to see if you do before you stop taking it.

The Apriso won't treat the rectum, but you could ask the doctor to try suppositories...they're not as effective, but at least you'll treat the rectum.

I'm not totally convinced regarding the Rowasa, I think you should give it another try. The other thing is that you might be sensitive to the sulfite as preservative. There's a sulfite free version as well.

Now, why am I trying to convince you to continue on the 5ASA meds you might be asking? There's evidence they help protect the colon from cancer/precancer. If you have continuing low level inflammation for a long period of time, it's not a good thing.

The two pills daily of VSL#3 is a good initial plan, and to start with a lower dosage...when does it say to take them?

Are you having any discomfort with them at this time?


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