Am I going to have to take this forever???

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hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 1/6/2008 4:53 PM (GMT -7)   
I have been having problems for a while, since June. I am normally a constipated person, but since then have been going every day, sometimes up to 5 times a day. I have lost 45 lbs. This all began after a very severe kidney infection. I tested positive for a fecal occult blood test (hidden blood in the stool) and started to take notice & look at my stool after going. I noticed blood a few times, in the stool. It used to be difficult for me to go, constantly constipated, going maybe twice a week, so I thought everything was finally good with my bowels since I was going so often. When the doctors were thinking colon cancer (with all the weight loss & my brother being diagnosed at the same time with pancreatic cancer), I thought they were crazy.Well, I had a colonoscopy & EGD done at the same time (NEVER do that–I was sick for a week!!) & found that I had ulcers & inflammation of my colon. The surgeon thought colitis. The biopsies came back "focal active colitis with mild edema" in the transverse/descending colon, and "focal active colitis with mild crypt distortion and mild edema" in the rectum/sigmoid colon. I was told it would go away after a month on azulfidine. As soon as that month was over, I lost another 10 lbs. So they put me back on it. My osteo said he was thinking Crohn's, some sort of IBD. I thought I had already been diagnosed! I am confused... Then my mom talked to her gastro about it & she thinks it's Crohn's, too. I couldn't believe it when I got the script filled & I have 5 refills!!! Am I going to have to take this forever??? UGh...

Please respond if you have any info. I do NOT have diarrhea or anything, just weight loss & I feel like crap, tired & such. I also have pain in my left rib, but they think that is due to a rib out of joint, so not related.

How do they tell if it's Crohn's as opposed to Colitis? Can't it just go away?

Also, I have been passing pills in my stool. Sometimes whole pills. My pain pills (Norco) are crumbled throughout my stool & if I take Excederin Migraine, they come out whole! What kind of pain pills can be taken when you aren't digesting things? Can they give you liquid pills? What can I do? The pain is so bad....
I just gave your post a title. :)

Post Edited By Moderator (stkitt) : 1/6/2008 5:15:41 PM (GMT-7)


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 1/6/2008 5:09 PM (GMT -7)   
Hello Hukleberrie. I am so sorry you are having so much trouble. As you will often read from folks on this site, diagnosis can often be a long process. Like many others, I was mis-diagnosed. The best advice I can give you is to get a second opinion, and contact you doctors with any questions you have or when your symptoms change. Have you told your Dr. you are passing pills?

I hope you feel better very soon!

MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 1/6/2008 5:11 PM (GMT -7)   
The findings from your scope could indicate either Crohn's or ulcerative colitis, but probably ppint mroe to Crohn's, given the term "focal" which indicates scattered areas of inflammation. In ulcerative colitis, inflammation is generally consistent thruoghout, while Crohn's presents more with skip areas of inflamed bowel and areas that are normal. As for passing the whole pills, that can indicate that the contents of yuor gut are moving rapidly, which is also a sign of inflammation. In my opinion, the findings from your scopes and other indicators should be directly evaluated by a board certified gastroenterologist. Surgeons can and do perform scopes, but they are usually looking for surgical problems and are not as experienced in diagnosing inflammatory bowel diseases as GIs are. Yur weight loss is also a common finding in Crohn's, as inflammation can interfere with how you absorb nutrients in the gut. One thing you will quickly learn if yuo scan posts on this forum is that the lines between Crohn's, ulcerative colitis, irritable bowel andother conditions (all ofwhich can cause the same pretty wide spectrum of symptoms) are sometimes blurry and it can take time and experimentation with various medications to nail it down. Right now I would say that if after a month on your curent meds you are seeing no changes or improvement, it's time to see a GI and see about stepping up to something more potent. Best of luck!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/6/2008 5:20 PM (GMT -7)   

IMHO, I think you need to see a different physician for a second opinion.  Usually in rapid gastric emptying the person has had surgery.
My 2 cents............ welcome and keep posting.


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* Not a mental health professional at all *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/6/2008 5:31 PM (GMT -7)   
i have cd and i used to have the symptoms you have and diarrhea. I passed pills before, and like mike said, this is usually a sign of a rapid moving tract, and its also a sign that your intestines arent absorbing nutrients like they should. The visual my doc gave me was like this:

hold your hand up and look at your five fingers, this would be healthy intestine. when you eat (or take pills) the things that need to be absorbed get stuck in between these fingers. Now make a fist, when you are inflamed, the fingers are gone, therefore everything you eat, or take is shooting right passed the non existant fingers and going str8 out the back.

I'm with kitt second opinion, third if necessary. The pain can be horrid, i know as i have a very low tolerance for pain. I've read on some other posts about pain patches, you may want to ask about that. I hope u feel better soon. I know this is no fun at all
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 1/6/2008 6:28 PM (GMT -7)   
You said this all started after a kidney infection... So I guess that means you took antibiotics. Have you been tested for C. difficile? Crohn's can also flare up after taking antibiotics.

If the doctors think you might have Crohn's/UC but are unsure, you should ask to have the Serology 7 test from Prometheus Labs.

Hope you feel better soon.

Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 1/6/2008 6:39 PM (GMT -7)   
I remember in the first year I was sick and was diagnosed (without factual testing) with ibs, gerds and my fav Mediterranean fever

I got multiple oppinions and the third gi specialist nailed it with diagnosis based on actual tests, crohns

The trick for me was trying not to get discouraged as each diagnosis failed to treat the symptoms, I kept hounding the docs and now I am in capable hands with the right diagnosis, so happy about that

I very much so hope you get this worked out and on the road to recovery soon, persistance paid off for me :)

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/6/2008 6:51 PM (GMT -7)   
Sounds like I need to go see a gastro. My mom has been pushing me to go see hers, so I guess I should.

I have not been tested for C.difficile, I am not even sure that that is.

I was on Cipro for 3 weeks for the kidney infection. I heard that can cause issues. I did have diarrhea a bit when I was on it, if I remember correctly.

The thing is – I do NOT have diarrhea.... Is that common? Everything I read about CD or UC talks of diarrhea.... I don't have it, so is it really true this could be either? I just keep hoping this isn't really an IBD. I guess I am just going to have to face facts.

BTW, the Azulfidine does work if I stay on it. I only started to lose weight again after being off it for a week or so.

I don't have insurance, so my doctors really limit what they would do. The colonoscopy only got completed because there was such fear of colon cancer. Now that isn't a fear, I seem to be on the back burner. I told my PCP about the pills & she said, "Probably the colitis. Anything else you need?" Yeah, I need to get better. I am wore out all the time & am not digesting well (obviously).

What is the Serology 7 test?

I actually have a high tolerance for pain (had both my children without pain meds or epidural), but I just can't tolerate the constant pain I have. This pain is not from the IBD but in my left rib area. Zillions of tests, and now where I am at with this rib issue is that my physical therapist says I have a rib out. My osteo says I am hypermobile which is a problem I guess. I am lost on this, but can't tolerate the pain anymore, and without the pain pills digesting, I just am on the edge of insanity...

stkitt—I have not had surgery. Is there another reason I may have "rapid gastric emptying"?

BTW, I also have dizziness & low blood pressure. Last time I went to the doc, it was 84/58, the lowest ever. I have an issue with my left ear, constant water in it & maybe that is causing the dizziness.... When I get up or move suddenly, I get dizzy. I lose my balance easily & have lost strength & coordination. Are these symptoms of CD or UC, too?

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/6/2008 6:56 PM (GMT -7)   
I forgot to mention the heart palpitations– Tachycardia. I am always around 100+ with my heart rate & they kinda freaked at first.... Is this another symptom?

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 1/6/2008 7:04 PM (GMT -7)   
You should definitely see the gastro.

I mentioned C. difficile because there is a kind of colitis you can get during/after taking antibiotics that is caused by that bacteria. Very surprised you were not tested, you should be!

http://www.webmd.com/digestive-disorders/tc/clostridium-difficile-colitis-overview

The serology 7 test is a blood test that can determine, with very good accuracy, if you have IBD and if so, whether you have Crohn's or UC. After I had a colonoscopy with findings suggestive of Crohn's my gastro ordered it immediately. It is covered by insurance or you can pay for it out of pocket.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/6/2008 7:14 PM (GMT -7)   
No, I have not had the C. difficile test. I guess I should ask about it. And the serology 7 test.

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 1/6/2008 7:25 PM (GMT -7)   
Interestingly... I have had two very bad episodes of pain/fever and both were preceded about a month or two earlier by UTI's--and both times I took Cipro. I plan on bringing that up with my GI doc when I see him next time.

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/6/2008 7:52 PM (GMT -7)   

Some of the symptoms you're describing could be from the frequent bm's.  If your potassium levels are too low it could be causing weakness and heart palpitations.

You may have had the c. diff test without realizing it.  If they took a stool sample, you probably have.  Ask plenty of questions about the serology 7 test before having it done.  I believe it's pretty expensive, even with insurance. 

You could definitely have CD or UC without diarrhea.  Some have constipation instead.  Some don't even have obvious GI symptoms.  I would mention the rib pain when you see the GI.  CD can cause pain in some weird places.  It might not be related, but I'd let the doctor decide for sure.

I hope you feel better soon.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/6/2008 8:35 PM (GMT -7)   
Really??? I would never have put the idea that CD & my rib issue could be related! Very interesting!

I did not supply a stool sample. Just the fecal occult blood test. Everything else was basically testing for cancer, cytology on my urine, IVP, CT scans, X-rays, bone scan, MRI on abdomen, blood tests, urine tests. I have the copies of all of my tests, and even my colonoscopy & EGD.

I probably won't be having the serology 7 test anytime soon, then. Without insurance & the docs thinking I had cancer, I racked up thousands in bills already. I am financially drowning. And now this. I was really hoping I didn't have CD. Actually, I thought if anything I would have UC, but CD seems so much worse.

I guess I should just make an appt with my doc (she's really great, she's a PA) & see if she will send me to a gastro.... I think it will be a month or so before I can probably get in to see her. Or should I be doing this really quickly?

You all are so great to help me out with all this info. I really do appreciate it. I'm kinda a little worried right now about this body of mine.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/6/2008 9:00 PM (GMT -7)   
Just to say, if the Azulfidine works, I'd stick with it on a long-term basis. It's inexpensive (generic), the risk of side effects is pretty low (compared with a lot of the other Crohn's meds), it's particularly useful in disease affecting the colon, and if it works to control your disease, there's no reason to go to more powerful medications until you need them. If you can manage your disease on this medication, you may be able to hold off on some of the more expensive tests for a while. Good luck.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/7/2008 6:07 AM (GMT -7)   
If you had developed a case of c. dif I think your main complaint would be diarrhea. Nasty, unrelenting diarrhea.
Belleenstein:

30+ years living with Crohn's.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/7/2008 7:41 AM (GMT -7)   
So I shouldn't worry about get the C.dif test? I am confused....

I know the Azulfidine helps with my weight, but I am still having so many symptoms. I still keep hoping that maybe it is just a bout with this colitis & that it will go away like the surgeon said. Should I follow up with him or just stay with my PCP? I did call her this morning to keep her informed about the pain meds coming out in my stool (or is it that my pain either being worse?). I either need to change pain meds or something. I need to be fixed, that's what.

I was kinda hoping that you all would think I was crazy if I didn't have diarrhea, I couldn't have Crohn's. I keep wanting to believe that there is NOTHING wrong with me, but I guess I know better....

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/7/2008 8:54 AM (GMT -7)   
I feel for you...I hope you feel better soon. Just wondering...is there aspirin in the Excedrin formulation you are taking?(many of the Excedrin products contain an aspirin derivative). It can cause bleeding in the GI. It would just make you feel a bit worse(you still have underlying inflammation). I was also told to stay away from ibuprofen, and from experience, my GI knew what he was talking about. Tylenol only meds (I know they don't work nearly as well as the NSAIDS) are the only over the counter pain reliever out there.

Also, look into some vitamins, as you are passing food rather fast...you are probably lacking in so many nutrients that will make you feel better(the b vits esp.)

Take care, good luck

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/7/2008 9:28 AM (GMT -7)   
I took the Excederin Migraine on the advisement of my doc. I was already told by the surgeon not to take ibuprofen, so I quit that way before the colonoscopy/EGD. I only took the Excederin Migraine a few times, but it always was coming out in my stool whole, so I doubt it is even affecting me at all. But I quit taking it anyway.....

Thanks for the info, btw. I appreciate it.

I started taking liquid vitamins that were left over after my brother passed before Xmas (pancreatic cancer diagnosed 4 months ago). I hope these vitamins are working, but I am still exhausted.

I just want to feel better. The pain is creaping back up to level 5 again already, and it's only 11:30. Normally the mornings aren't bad until about 2pm. I hope my doc calls me back & helps me with this pain med issue soon.....

sad

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/7/2008 9:41 AM (GMT -7)   
Huckelberrie,
Sorry to hear you are having such a bad day. I'm high on the pain thing too and that's AFTER the vicodin and lidocane. Stupid fissure!

I sincerely hope you are feeling better and get the meds you need...soon.

Ah, to feel human again....

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/7/2008 11:36 AM (GMT -7)   
I know. It's getting worse now too. By tonight I will be at 7/8. Ugh.

I feel for you...

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/8/2008 6:12 PM (GMT -7)   
The nurse finally called me back tonight. She is calling in a script for Darvocet & says I should switch to that. I am assuming it's more digestible??

Here's the thing. I am starting to realize there is something really wrong with me. And although I love my PA, I don't think I am getting the care I need. Without insurance, I am really not sure what to do. I went to a site where you can ask questions to med professionals & asked about the pill issue & he said:
"It is in your best interest to seek care directly from a gastroenterologist and also continue follow-up care with your surgeon. It is not normal for your medications to not digest for such a long period of time."

I am going to call the surgeon tomorrow and mention this issue with them. I am somewhat surprised, even annoyed, that my PA isn't wanting to see me or send me to a gastro knowing I probably have Crohn's, knowing I am still losing weight, and knowing that I don't feel well & am passing pills in my stool. I need to get a referral to go to a gastro, I am sure. I don't have insurance, so I wish I could just make an appt., but I know it doesn't work that way. So what do I do?
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