Since three GI's and one ID from my hospital have never done anything to try to help me with my debilitating constant nausea, severe fatigue, enormous weight loss and feeling like I've been hit by a truck everyday since I was cured of C-Diff back in June '07, I finally went to a GI affiliated with a different hospital and he ordered a Ct Scan w/contrast of my abdomen and pelvis.
His office called saying the results showed an inflamed Pancreas. Wants me to come in to discuss it, but doesn't have an opening for 2 more weeks. Checked it out at the Cleveland Clinic, Mayo Clinic and Web MD sites. A little confused because I only have a few of the symptoms listed.
Just wondering if any of you had an inflamed Pancreas after C-Diff and, if so, what treatment were you given?
Thanks in advance for any of your input or comments.
Sandy
Southeast Michigan
Anyone get an Inflamed Pancreas after C-Diff
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sks001
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Karien
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Karien
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Hi Sandy,
it was reported in a Dutch newspaper "Nu" on 1/23/08. The website is www.nu.nl The only thing though, it is in Dutch! When my sister heard that I was on high doses of probiotics, she informed me about this problem with the probiotics and pancreas inflamation.
The test were done in a hospital in Utrecht (Town). Patients with inflamed pancreas were treated with probiotics. 24 patients died during the test period which ran from 2004 until 2007. The tests were stopped immediately and so were similar tests that were running in other European countries.
This does not mean that probiotics are bad, on the contrary, but if you are suspected of pancreas problems, talk to your docter about good treatment!
Let me know if you need more info.
it was reported in a Dutch newspaper "Nu" on 1/23/08. The website is www.nu.nl The only thing though, it is in Dutch! When my sister heard that I was on high doses of probiotics, she informed me about this problem with the probiotics and pancreas inflamation.
The test were done in a hospital in Utrecht (Town). Patients with inflamed pancreas were treated with probiotics. 24 patients died during the test period which ran from 2004 until 2007. The tests were stopped immediately and so were similar tests that were running in other European countries.
This does not mean that probiotics are bad, on the contrary, but if you are suspected of pancreas problems, talk to your docter about good treatment!
Let me know if you need more info.
Karien
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Karien
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Sandy I tried finding the info in English for you. Google it with"
tests with probiotics in the Netherlands" There is a lot of info in English language! If that doesn't work try www.sciencenews.org/articles/20080223/fob.1.asp
Let me know if it works.
tests with probiotics in the Netherlands" There is a lot of info in English language! If that doesn't work try www.sciencenews.org/articles/20080223/fob.1.asp
Let me know if it works.
Karien
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sks001
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I finally found many articles about these patient deaths.
In a nutshell, they said probiotics were given to severely ill patients in ICU with organ failure and on a feeding tube.
In the experiment, the researchers added probiotics, as well as a fiber supplement, to the patients' feeding tube in the expectation that it would boost the body's resistance to harmful bacteria.
As to the multi-fiber product, this is a source of concern for several reasons. First, there was no group fed (by nasogastro tube) fiber only. The fiber product used is a patented blend of six different fibers. Fibers, however, will feed many different types of bacteria. There is no reason to believe that the fiber product would be fermented only by the probiotics. Second, there was no group that was given probiotics only and no fiber. For these two reasons, the study design was seriously flawed as there were obvious variables for which there was no control.
Sandy
Southeast Michigan
In a nutshell, they said probiotics were given to severely ill patients in ICU with organ failure and on a feeding tube.
In the experiment, the researchers added probiotics, as well as a fiber supplement, to the patients' feeding tube in the expectation that it would boost the body's resistance to harmful bacteria.
As to the multi-fiber product, this is a source of concern for several reasons. First, there was no group fed (by nasogastro tube) fiber only. The fiber product used is a patented blend of six different fibers. Fibers, however, will feed many different types of bacteria. There is no reason to believe that the fiber product would be fermented only by the probiotics. Second, there was no group that was given probiotics only and no fiber. For these two reasons, the study design was seriously flawed as there were obvious variables for which there was no control.
Sandy
Southeast Michigan
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sks001
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Update - Went to see this new GI on March 6 for results of Pelvis & Abdoman Ct Scan with contrast. Didn't have just an inflamed pancreas as nurse told me on the phone. Dr. said scan report showed calcifications on the tail area of the pancreas consistent with Chronic Pancreatitus. Dr. was very nonchalant and, once again, only spent 4 or 5 minutes with me. Had to ask to have blood tests done! Told me to take Zantac twice a day, and Viokase (pancreatic enzymes) with every meal or snack. and come back in 2 months. Ten days and don't notice any difference. Still as nauseous as I have been since last spring and still look like a skeleton.
On the way out, asked for a copy of the Ct Scan results for my records. Put it in my purse and didn't remember to take it out until this weekend. Was shocked to see that it showed 5 more things that he didn't even mention or explain to me what they were:
1. Air fluid levels were present in the large and small bowel, with small bowel more severely affected, consistent with an ileus.
2. Non-enlarged bilateral inguinal lymph nodes were identified.
3. Lung bases - there is a small right sided Bochdalek hernia.
4. There is an incident intervertebral disc calcificaion at the T12-L1 level.
5. Prominent liver extending to the false pelvis - measured 15.8 centimeters in length.
Called his office today and asked to speak to him about these 5 other things. Nurse wouldn't let me talk to him. Rudely told me I could discuss them with him when I came back in 2 months.
I'm really scared after reading how serious Chronic Pancreatitis is itself and can even lead to diabetes.
The ones of you that I have read that have found really nice and helpful PCP, GI or ID are really lucky, as I sure haven't found not one caring doctor and I'm in a major suburban metropolitan area.
Sandy
Southeast Michigan
On the way out, asked for a copy of the Ct Scan results for my records. Put it in my purse and didn't remember to take it out until this weekend. Was shocked to see that it showed 5 more things that he didn't even mention or explain to me what they were:
1. Air fluid levels were present in the large and small bowel, with small bowel more severely affected, consistent with an ileus.
2. Non-enlarged bilateral inguinal lymph nodes were identified.
3. Lung bases - there is a small right sided Bochdalek hernia.
4. There is an incident intervertebral disc calcificaion at the T12-L1 level.
5. Prominent liver extending to the false pelvis - measured 15.8 centimeters in length.
Called his office today and asked to speak to him about these 5 other things. Nurse wouldn't let me talk to him. Rudely told me I could discuss them with him when I came back in 2 months.
I'm really scared after reading how serious Chronic Pancreatitis is itself and can even lead to diabetes.
The ones of you that I have read that have found really nice and helpful PCP, GI or ID are really lucky, as I sure haven't found not one caring doctor and I'm in a major suburban metropolitan area.
Sandy
Southeast Michigan
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sks001
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Roy - Obviously you didn't read the first post. Have already gone through uncaring three GI's and one ID besides two PCP's who were Internists. This is unbelievable trying to find just one nice doctor for the C-Diff after effects. The ID had the nerve to send me a bill for $440 for a 5 minute office visit where he told me he knew nothing about the after effects, that he only treated active infections. Their staffs are just as bad, very rude and inpatient.
Had one that was wonderful. Unfortunately he was a Dermatologist. He even personally called me with results of biopsies that were taken, and explained that one was inconclusive and how he wanted me to come back in so he could take a deeper sample of that one.
There is absolutely no excuse whatsoever that this GI couldn't have told me what else the Ct Scan showed at the time I was in his office for that reason ... that I had to read about them only because I asked for a copy of the report for my records.
After never being sick and never having a doctor in my entire life, these past 15 months have sure been a disgusting nightmare. I thought my dealing with the VA hospitals for 25 years for my brother that was paralyzed in the war was bad because you never saw the same doctor twice, but that wasn't half as bad as these private doctors who are in it for the money and treat people like an assembly line.
Sandy
Southeast Michigan
Had one that was wonderful. Unfortunately he was a Dermatologist. He even personally called me with results of biopsies that were taken, and explained that one was inconclusive and how he wanted me to come back in so he could take a deeper sample of that one.
There is absolutely no excuse whatsoever that this GI couldn't have told me what else the Ct Scan showed at the time I was in his office for that reason ... that I had to read about them only because I asked for a copy of the report for my records.
After never being sick and never having a doctor in my entire life, these past 15 months have sure been a disgusting nightmare. I thought my dealing with the VA hospitals for 25 years for my brother that was paralyzed in the war was bad because you never saw the same doctor twice, but that wasn't half as bad as these private doctors who are in it for the money and treat people like an assembly line.
Sandy
Southeast Michigan
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carrie
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Sandy you sure have had a tough go this past year. I wish(along with you I'm sure) you could just get a break and start moving forward in your healing. You must be so frustrated especially being such a well person all your life(I can relate). Most of my doctors have been great but right now they have no idea what to do next. Good thing for this site at least there are many others going through the same experiences. Yours seems to be a little more challenging......wish I could help some how........I'll say a pray for you. Take care.
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jaspore
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Hi SKS
It's April 17, and I'm wondering how you're doing?
I'm in NC, and I'm having similar problems with finding a knowledgeable doc....I'd settle for knowledgeable. Kind would be divine too though!
It is very frustrating!
However, we can't give up. I'm spending endless hours on this site, after many days and hours on the rest of the net.........
Quite frankly, I'd rather just have a fecal transplant than go through all these ABs! At least it would be over with quickly! There's a plethora
of knowledge here, but finding someone to accomodate the condition with any of this information, is proving to be challenging.
Are you doing better?
How did you get there?
It's April 17, and I'm wondering how you're doing?
I'm in NC, and I'm having similar problems with finding a knowledgeable doc....I'd settle for knowledgeable. Kind would be divine too though!
It is very frustrating!
However, we can't give up. I'm spending endless hours on this site, after many days and hours on the rest of the net.........
Quite frankly, I'd rather just have a fecal transplant than go through all these ABs! At least it would be over with quickly! There's a plethora
of knowledge here, but finding someone to accomodate the condition with any of this information, is proving to be challenging.
Are you doing better?
How did you get there?
JASPORE
Wilmington, NC
Wilmington, NC
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sks001
- Regular Contributor
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Carrie - Thanks for the kind words and prayers. They're sincerely appreciated. Soooo many nice and caring people on this site!
Jaspore - I'm not getting any better, even nutritional drinks are now making me even more nauseous. Lost more weight - now 98 lbs. and I'm 5'8. Also got very painful arthritis in my entire left arm (reactive perhaps from C-Diff or flu shot hit something it wasn't supposed to because the exact spot shot was given is still so sore & painful to the touch). Yet another thing. Having to get physical therapy for it as can't raise arm or reach behind me. Sooo hard to try to do my hair or put on bra or clothes.
Really scared at this latest diagnosis of Chronic Pancreatitis as there's no cure. Pepcid 150 2x a day and Viokase pancreatic enzymes after every meal or snack that latest dr. prescribed haven't done a thing to help. Finally got a copy of blood test he ordered that he said "everything looks good!" Well, it was the shortest blood test I've ever had - only tested 11 things. And "everything did not look good!" My RBC (Red Blood Cells) were low.
Yes, finding a knowledgable doctor, especially one that has more than 3-5 minutes of time, is certainly a challenge.
What's really funny is that last week I had to have a large cyst removed from the very top of my back just barely below shoulder (about where bra strap hits). When I went in, the Dermatologist, who is also a PHD and a nice person, looked at me with shock in his eyes and asked what has happened to you? I had seen him just before C-Diff to have a few moles removed. Told him I had really bad pseudo C-Diff twice last year (in hospital for 9 days each time and they asked me if I wanted a Do Not Resicitate). While he was surgically removing the cyst, he chatted about C-Diff and I couldn't believe how much he knew about it. He even said he would never Rx a PPI to anyone that has had or has not had C-Diff. I told him I sure wished he was a GI or ID instead of a Dematologist. Told him about my terrible experiences with his colleagues at St. Mary's Hospital that he is affiliated with, and he couldn't believe how rude & inept they were. He even told me he would ask around and see if he could find me a good GI. How nice was that!
You asked "how did I get there" Jaspore. I assume you mean how did I get C-Diff. I believe I got it from touching something dirty, filthy, contaminated in the ER.
Sandy
Southeast Michigan
Jaspore - I'm not getting any better, even nutritional drinks are now making me even more nauseous. Lost more weight - now 98 lbs. and I'm 5'8. Also got very painful arthritis in my entire left arm (reactive perhaps from C-Diff or flu shot hit something it wasn't supposed to because the exact spot shot was given is still so sore & painful to the touch). Yet another thing. Having to get physical therapy for it as can't raise arm or reach behind me. Sooo hard to try to do my hair or put on bra or clothes.
Really scared at this latest diagnosis of Chronic Pancreatitis as there's no cure. Pepcid 150 2x a day and Viokase pancreatic enzymes after every meal or snack that latest dr. prescribed haven't done a thing to help. Finally got a copy of blood test he ordered that he said "everything looks good!" Well, it was the shortest blood test I've ever had - only tested 11 things. And "everything did not look good!" My RBC (Red Blood Cells) were low.
Yes, finding a knowledgable doctor, especially one that has more than 3-5 minutes of time, is certainly a challenge.
What's really funny is that last week I had to have a large cyst removed from the very top of my back just barely below shoulder (about where bra strap hits). When I went in, the Dermatologist, who is also a PHD and a nice person, looked at me with shock in his eyes and asked what has happened to you? I had seen him just before C-Diff to have a few moles removed. Told him I had really bad pseudo C-Diff twice last year (in hospital for 9 days each time and they asked me if I wanted a Do Not Resicitate). While he was surgically removing the cyst, he chatted about C-Diff and I couldn't believe how much he knew about it. He even said he would never Rx a PPI to anyone that has had or has not had C-Diff. I told him I sure wished he was a GI or ID instead of a Dematologist. Told him about my terrible experiences with his colleagues at St. Mary's Hospital that he is affiliated with, and he couldn't believe how rude & inept they were. He even told me he would ask around and see if he could find me a good GI. How nice was that!
You asked "how did I get there" Jaspore. I assume you mean how did I get C-Diff. I believe I got it from touching something dirty, filthy, contaminated in the ER.
Sandy
Southeast Michigan
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cindym
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Sandy- Are they sure it is pancreatis? I had severe nausea for almost 4 years during my seige with cdiff (which I still have not got rid of). Nausea was one of my worst symptoms. It was discovered in 2004 that I had gallstones and they felt it was causing the constant nausea. Have they done an ultrasound of your gallbladder? I still experience nausea but after the gallbladder was removed it has improved dramatically and now it is only when I indulge in foods I know to avoid that it happens. Also, primadolophilus reuteri gave me back my appetite and stopped the weight loss. Seems they could find something to help!
Cindy
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sks001
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Cindy - Sorry for the lateness of this reply, but haven't been on site too much lately because I've been sooooo sick. Also, I don't think the email function is working that you're supposed to receive when there's a response to your post.
Funny that you mention gallbladder because I had mine removed on 11/28/06 four months prior to developing C-Diff. First time in 63 years I was ever operated on or hospitalized. I had some type of complication as was only supposed to stay in hospital overnight and be released the next day when you could keep food down. Well, I couldn't and stayed 5 days on IV Flagyl and anti-nausea shots every 4 hours. Sent me home still sick on clear liquid diet. Back in ER 6 days later. Tried to tell me I had stomach virus - yeah right. Took until almost Xmas before I finally started to feel better and could keep soft foods down and nausea subsided mostly. On 1/13/07 finally felt better & did laundry. Next day my appetite came back with a vengence & went grocery shopping & almost bought the store out - ha ha. Then had 2 other bad things happen, and then the C-Diff came in March.
The Ct Scan with contrast showed Chronic Pancreatis with the tail of the Pancreas calcified and there's no cure for it. My only hope at this point is that perhaps the radiologist that read it was wrong. I understand it can be subjective by who's reading it.
Went back to this GI Thursday for 8 week check-up (had to take a $26 Zofran ODT in order to get there) & told him the Zantac 150 twice a day and Viokase 8 pancreatic digestive enzymes been taking one after every snack and two after every meal (can't really eat a meal though) aren't working; in fact, feel as nauseous or more than ever. He said to switch to Prilosec OTC and up the Viokase to three, and come back again in another 8 weeks. Strange that the day before appt. I had really bad cramps that I'd never had before even during C-Diff. Then today, day after appt., I was sooooo sick I thought I was going to die and had bad chest pains and terrible abdomen cramps. Through all this the last year and a half, I've never vomited, just constant nausea. Today was the first time I felt like I might really vomit, but didn't. Sometimes I wish I would as I think most people feel better if they do.
I'm so fed up with this and totally exhausted. A few months ago started to having to take a couple hour nap around 2 or 3 pm which I've never done in my life. Had more extensive blood tests done at regular doctor last week and showed everything is fine. Grrrrr - so aggravating. Darn docs have the mentality that if blood tests are fine, then you are.
Sandy
Southeast Michigan
Funny that you mention gallbladder because I had mine removed on 11/28/06 four months prior to developing C-Diff. First time in 63 years I was ever operated on or hospitalized. I had some type of complication as was only supposed to stay in hospital overnight and be released the next day when you could keep food down. Well, I couldn't and stayed 5 days on IV Flagyl and anti-nausea shots every 4 hours. Sent me home still sick on clear liquid diet. Back in ER 6 days later. Tried to tell me I had stomach virus - yeah right. Took until almost Xmas before I finally started to feel better and could keep soft foods down and nausea subsided mostly. On 1/13/07 finally felt better & did laundry. Next day my appetite came back with a vengence & went grocery shopping & almost bought the store out - ha ha. Then had 2 other bad things happen, and then the C-Diff came in March.
The Ct Scan with contrast showed Chronic Pancreatis with the tail of the Pancreas calcified and there's no cure for it. My only hope at this point is that perhaps the radiologist that read it was wrong. I understand it can be subjective by who's reading it.
Went back to this GI Thursday for 8 week check-up (had to take a $26 Zofran ODT in order to get there) & told him the Zantac 150 twice a day and Viokase 8 pancreatic digestive enzymes been taking one after every snack and two after every meal (can't really eat a meal though) aren't working; in fact, feel as nauseous or more than ever. He said to switch to Prilosec OTC and up the Viokase to three, and come back again in another 8 weeks. Strange that the day before appt. I had really bad cramps that I'd never had before even during C-Diff. Then today, day after appt., I was sooooo sick I thought I was going to die and had bad chest pains and terrible abdomen cramps. Through all this the last year and a half, I've never vomited, just constant nausea. Today was the first time I felt like I might really vomit, but didn't. Sometimes I wish I would as I think most people feel better if they do.
I'm so fed up with this and totally exhausted. A few months ago started to having to take a couple hour nap around 2 or 3 pm which I've never done in my life. Had more extensive blood tests done at regular doctor last week and showed everything is fine. Grrrrr - so aggravating. Darn docs have the mentality that if blood tests are fine, then you are.
Sandy
Southeast Michigan
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TheVike
- Long Time Contributor
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SKS i d tell the doc who charged 440 to stick that bill up his a**! Check out the other post referencing the gall bladder just above this one! Chest pains etc...let me gueess like my self you smoke and do drink, no? Of course feel fre to ppm i think this may be affecting the gall bladder more than myself or even my doc realizes yet they ve said nothing i am gonna ask asfter doing some research for an ultrasound to see if i have stoones.... if so i am gonna ask about removal of it as it may be the orgins from the chest pains i have had over the past ten years as discussed in my other post... Thioughts?
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