Colonoscopy normal, but still bleeding and such...

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jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/21/2012 5:02 PM (GMT -6)   
Hi everyone -
 
So, I decided to just copy this from my other post "New to the Forum" to get opinions from others...
 
Well, turns out that my biopsies were only taken from my colon and not my TI, as previously thought... and those came back normal. I go back to my GI Friday morning to try and get this all figured out. I'm just SO frustrated. He prescribed Dicyclomine to try and help with whatever... that's a medicine used for IBS, isn't it? He said he just isn't sure what's going on yet. My guess is that it has something to do with my small intestine. If my colon looks fine... then, something must be up in the small intestine... right? I know this can't be IBS because I'm having bleeding with pretty much every bowel movement. It's mostly only mucus coming out now... but, it's got blood in it every time. And, might be getting to be too much info, but, has anyone experienced a fishy odor with mucus or BMs???? I didn't think I have an infection (mostly because Flagyl did not do anything for me), but I've heard that it COULD be indicative of an infection. I'm not jumping to conclusions, though. Going along the lines of the bleeding... I don't have any fissures or hemorrhoids (external or internal) - so, that isn't causing the bleeding.

When I talked to his clinical assistant on Friday and was told that everything was normal from the colonoscopy, I felt defeated and cried for a good couple of hours. This is exhausting - I thought for sure, I went through that stupid prep for an answer... lone-behold: nothing. I was doing some research... as all of us probably have at some point in time and, of course, I am taking things at face value and not looking further into them or self-diagnosing. But, I wanted to see what other options or forms of CD there are. Has anybody had experience with CD in just the jejunum? It seems to be the least common form... but, as of now, I think it may be the only explanation for the constant D, feeling sick, an un-explainable fever, nausea, bloody-mucus, etc. etc.

@HabsHockeyFan: Student health on campus prescribed me this cream for the rash. She said she doesn't think it's connected, but wanted to try and help me out in any way she possibly can. I have seen a slight diminish, after a week, in the appearance/redness... but, it's burning more and more and still showing up on other parts of my arms. Not sure what to think. The cream is called: Clotrimazole and Betamethasone Diproprionate and I use it 2x/day for 2 weeks. It is a corticosteroid and an anti-fungal. I'm still gonna give it a 'go' for the next week...but, I think it's just taking the edge off... minus the fact that the burning is worse :/ Have you had anything that has helped?
 
 
Jade

ep49
Regular Member


Date Joined Apr 2010
Total Posts : 200
   Posted 10/23/2012 12:31 AM (GMT -6)   
This sounds so much like what happened to me in 2009.  I had been bleeding and suffering from rectal pain for months.  I had occasionally seen blood on and off for years too but all of my colonoscopies were normal.  The last one in 2008 showed some inflammation which the doctor attributed to the prep, he said.  So, I went away totally confused and still wondering what the heck could be wrong with me.  By summer of 2009, I was pooping blood and clots and running to the bathroom several times a day.  Finally, I started having severe abdominal cramps and I told my husband to take me to the ER.  After a CAT scan and a diagnosis of diverticulitis, I spent a month in bed on antibiotics, getting worse and losing 5 pounds a week.  I changed doctors and was sent for another CAT scan and it was noted that whatever was in there had spread.  I was admitted to the hospital and after another colonoscopy, which showed severe disease in my colon and rectum, I was put on prednisone and IV antibiotics.  I was diagnosed with Ulcerative Colitis, but then it was changed to Crohns disease. I am now being treated with Humira at this time.  Why the disease wasn't detected until it almost was killing me is still a mystery but I wanted to respond to your post so you will feel like you aren't alone. Change doctor if you need to and don't give up trying to find out what is wrong.  If you are bleeding, something isn't right, so don't take no for an answer.

jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/23/2012 8:21 AM (GMT -6)   
Thanks, ep49. It's nice to have had SOMEONE respond out of the 60 something people who viewed. I've been keeping a 'diary' thing to log what has been going on. I got some time away from campus yesterday and dropped off what I had. Since the 19th, I've lost about 8 or 9 lbs. I go to the bathroom roughly around 9 times a day. I don't eat but maybe 500 calories a day, sometimes none at all... but, my BMs pretty much always have lots of undigested food (even if it's not a rush to get to the bathroom). I dropped off the diary thing (that stated what I just said and, of course, lots more) around 10:30 am yesterday and got a call from him around 11:05 that said I needed to do another course of flagyl (I'm reluctant - been on it 3 times since this summer and no difference) and go to the lab at the hospital for stool tests (c-diff, WBC, culture, and one or two other things that I can't remember). He said during my follow up on Friday, he may end up prescribing me some prednisone, because, in the past when I've had to take it for other things (spontaneous neuropathy with a heel fracture due to osteopenia, and a back injury), I've noticed a change (good) in my bowel habits. I would completely welcome prednisone.

Again, thanks for responding! It makes me feel a whole lot better... and a whole lot less crazy!!!

Jade

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3456
   Posted 10/23/2012 8:52 AM (GMT -6)   
Please don't be snippy about people not responding out of those who viewed. Most of the time it's because we have nothing helpful to say because we can't relate, haven't had experience, etc. Your questions were pretty specific on "has anyone had.....?"
CD 2010, Fistula, Pancreatitis
Prednisone, Imuran, Asacol, and Remicade

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

sherbear46
Veteran Member


Date Joined Jun 2011
Total Posts : 3316
   Posted 10/23/2012 10:02 AM (GMT -6)   
If your doctor is suspecting C-diff and the flagyl isn't doing anything maybe ask for vancomycin. Just a thought. Wish I had other ideas but I do agree with ep49. Bleeding is not normal especially since you have no hemmies or fissures.
Co-Moderator UC

Sheri-39 years old

Diagnosed UC/IBS April 2009-suffered over a year prior to diagnosis.

Currently taking Lialda 2 tabs in am, Protonix 40mg every day, Allegra, Zyrtec, Probiotics, Vitamin D3, Calcium, Zocor and Generic Rowasa enema twice a week.

Currently in Remission since June 2011.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 10/23/2012 11:20 AM (GMT -6)   
jk5493, my daughter has had a similar experience with mucous, blood, weightloss, nausea, etc. She hasn't had a colonoscopy but did have an endoscopy, which found mild inflammation in her esophagus and her duodenum. Her GI treated her for GERD and that resolved her upper GI discomfort to a large degree. Her GI has spent the past year trying to figure out what to do about the mucous and the occasional [very small] amount of blood in her stool, and has opted to do nothing.

There is a test called calprotectin that will find inflammation markers in stool. It's about 90% accurate for predicting inflammation in the bowel according to papers I've read. My daughter's GI won't do the test because it's expensive and she (the GI) would scope her patient to verify anyway, but maybe it's a test you can consider. And don't forget about the pill cam.

My daughter is almost 13 and most of her stomach complaints happened at the onset of puberty. I really think the surges in progesterone and other gonadal hormones exacerbated issues with acid production etc. It's possible my daughter will eventually have an IBD diagnosis - when I was 12 I felt just like she does. But I didn't get a diagnosis until I was 39.

Sometimes it takes a long time to figure this out. I'm sorry it's so frustrating for you.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/23/2012 5:03 PM (GMT -6)   
@scifigal2k: I wasn't trying to be 'snippy' through that comment. I just mean that it is reassuring that at least one person out of so many was able to relate/could contribute in such a way.

Thanks for the suggestion about the vancomycin! I will DEFINITELY ask him about it Friday morning when I go (that is, if my stool tests come back inconclusive or something).

Kazbern - thanks for telling me about the calprotectin test. I think that I read about that briefly last night. It wasn't on my lab slip; however, I guess depending on the results from the specimen I turned in today, I may suggest that test to him. I am a medicaid patient and, at least for NC, those with medicaid who are under 21 years of age, qualify for any necessary tests/treatments that are necessary to 'correct' any issue discovered/diagnosed. So, that is something on my side.

Truly am thankful for the suggestions. I feel as though I am walking into this blindly because this is the first time I've actually decided to do anything (mostly because I'm super sick... but also because I'm FINALLY insured for the first time in a longggg time). So, it's all a new experience.

I have to say, the stool sample thing was SO unpleasant. I mean, it's one thing to examine, but it's another thing to HAVE to dig around - AND - it's a whole new ballpark when you have to hand it over to some stranger. I got out of that lab area faster than the lady (and attractive, male lab-tech) could say thank you. It was embarrassing, but at least I will (hopefully) never have to see them again!

jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/24/2012 8:07 PM (GMT -6)   
Well, I went to student health on campus this morning because the pain in my entire mid-section has gotten way worse to where my back kills me, too. It's been hurting for the last couple of weeks but now, it's so bad I can't get comfortable, or sleep. Turns out, I have a bad kidney infection now because of dehydration. Also, got one of my stool culture results back after only 24 hours... they did find evidence of c-diff overgrowth. The doc in the ER talked to my GI and he said he still thinks that I have something else going on in my small intestine that the c-diff is maybe exacerbating. They gave me an additional antibiotic or two, a couple of different anti-nauseas so I can keep liquids or antibiotics down (got severely dehydrated because I get too nauseous from eating or drinking - sometimes ended up throwing the water up). They also gave me a prescription for VSL packets. I'm trying to see if there is some way I can get medicaid to pay for it. If not... it's totally not an option for me. But, has anyone used the VSL packets? If so.... what was your luck with them?

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4476
   Posted 10/24/2012 9:07 PM (GMT -6)   
I was really nauseous and could barely eat when I had c-diff too. Sorry you are going through all of this in college! If you can't afford the VSL 3 you might try Florastor probiotics. They seemed to help me and I am still taking them...still expensive but cheaper than VSL.
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have GERD and IBS. (Dx. with c.difficile and gastroparesis 1/12- now resolved)

MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics .25 xanax for sleep prn

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3456
   Posted 10/24/2012 9:53 PM (GMT -6)   
Sorry if assuming you were being snippy; there have been some problems at times on the forum. People not respecting others' comments, being rude, etc.

I'm sorry you've been so sick. I've had 3 flares of c. diff. in the past 7-8 months. Really not a fun bacteria at all. A probiotic will be helpful to keep it at bay. Hope you start feeling better soon!
CD 2010, Fistula, Pancreatitis
Prednisone, Imuran, Asacol, and Remicade

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/25/2012 3:54 PM (GMT -6)   
That's fine; I understand completely.

I'm anxious to see what else they may have found in the stool cultures, etc.
Now that I'm more hydrated... I'm obviously urinating more and now I'm noticing the pain from the kidney/bladder infection.

I ate for the first time today in like 4 or so days and... it stayed down!!!! Now, it's just not coming out and it feels bad. But, I'm guessing that my gut is just 'waking up' from the rest period.

I'm a bit worried about this whole c-diff thing because I've had it since August (at least, I've been sick since the beginning of August) and I've been on flagyl twice since. I am now on it for the third time and no difference so far. They said I could try vancomycin if nothing else... but, we shall see.

jk5493
Regular Member


Date Joined Oct 2012
Total Posts : 118
   Posted 10/26/2012 10:19 AM (GMT -6)   
Well... Doc gave me vancomycin and, since the pharmacist said he wouldn't even try to run the VSL through medicaid... I was also given a bunch of the samples that my GI had in his office. Gotta love free stuff!

He said he was confused and unsure as to what is wrong. Although my culture showed a positive c-diff and evidence of pseudomembranous colitis, my colonoscopy was normal and did not show any evidence of pseudomembranous colitis. I'm confused too... does anybody have any experience with this? Is it possible that, even though it wasn't there before, it's there now? I'm just frustrated and want answers. Honestly, I wish they would just put me in the hospital so I could rest, eat nothing, and get better. I feel like a zombie.

angela lloyd
New Member


Date Joined May 2013
Total Posts : 7
   Posted 5/7/2013 11:59 AM (GMT -6)   
Hi everybody I am new to this site. I have suffered on and off for 16 years, one doctor telling me that I have Diverticular Disease, only to be told 5 years ago that I actually had Crohn's and Diverticular Disease. I was rushed into hospital again last week with bleeding and extreme stomach cramp and, of wanting to go to the toilet all the time, but all that came out was blood and so much pain in my stomach. I have had Sigmoidoscopies, Barium Enema's and now two colonsoscopies because nobody can get to the bottom of it. Everytime I go in my T cell's are up, yet they say well they still can't figure it out. Two years ago, yet again I was rushed in and was told that I have Crohn's again and two years before that was rushed in, each time bleeding and being sick. There is so much that I cannot eat and things that set it off, although I am very careful, but now and then I might buy something that has got what I can't eat in it and I make a mistake and suffer for it. They kept mentioning Colitis in the hospital this time and, then said oh no youve not got Crohns... lol They have sent me home after 8 days and im none the wiser. Anybody on here got any suggestions? Thanks for listening.

tummytrouble43
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/6/2014 4:32 PM (GMT -6)   
Hello, Did you ever find out what was wrond I just got my colonoscopy results back today they took biopsies lower colon was inflamed and irritated..results everything was normal. I am happy but... it just doesnt make sence to me. why my stools were all mucus and streaked with blood before the test and was hospitalized 2 x the month before test for severe cramps and mucus and alot of blood ..1st time 4 days 2nd 3 days and told from a scan preformed there I had colitis.. Had my first bm since test and there was mucus in it again but no blood... Very confused

Usher CD
Regular Member


Date Joined Oct 2013
Total Posts : 155
   Posted 3/7/2014 1:07 PM (GMT -6)   
Hello jk5493 and ep49,

I find your post/reply interesting. I have had the same experience. The first two times I bled a lot after consuming alcohol. I saw a lot of dark red blood in the stool and I was freaked out. I rushed to the hospital the next day. I was admitted to the emergency ward. My hemoglobin level was 6.0 gm/DL (Normal 13.8 - 17.2 gm/DL). The following day doctors conducted the upper and lower GI colonoscopy and yet could not find a bleeding spot. Not even the signs of inflammation or scars. They investigated every single inch of the intestine, stomach, esophagus etc. I was diagnosed with anemia and discharged. I again started eating crap and bled for the third time. The could find an inflammation in the TI and diagnosed me with CD.

It has been one of the unsolved mysteries to me. I worry more about why they could not find anything the first two times rather than my CD. Have your intestine, stomach, rectum, esophagus etc. been thoroughly examined?

I could draw a conclusion that I bled in the TI the first two times too. It might be possible that the healing was so quick which had not left any signs of inflammation or bleeding spot.

Sorry! I'm unable to answer your question, as I myself don't have an answer for my question. You might sooner or later be diagnosed with IBD. Please take care of your health. I wish you speedy recovery.
25 year old male living alone in a foreign country and diagnosed with CD, GERD, gastritis, chronic anal fissure, anemia on 29.09.2013.

Medication: Pantoprazole 20mg 1-0-0, Mesalamine 1.5g - 1-0-1 1-0-0, Budesonide 9mg 1-0-0, FERRO SANOL duodenal 100mg - 1-1-1
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