Duodenitis/pancreatitis? Lialda?

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NA_NA
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/26/2008 11:43 AM (GMT -7)   
A couple of weeks ago my significant other (so) was diagnosed w/UC and prescribed Lialda. A week and a half later he had severe upper abdominal pain, low grade fever, vomiting and ended up in the ER. He has been in the hospital for 10 days now and we are still trying to figure out what's going on.  The first ct scan indicated acute pancreatitis...a few days later when the Dr. said he could go home as soon as he started eating again, he began to have the most severe pain and began to vomit blood, plus has been bleeding rectally continously for 2.5mos prior.  The Dr. scoped again and the findings were that he had acute duodenitis...then the diagnosis went to Crohn's (atypical).  His duodenum was severely inflamed, even the Dr. said he had never seen anything like it. Things are very confusing and we don't feel confident w/everything.  Has anyone else experienced duodenitis after taking Lialda? Any other thoughts or suggestions?
Also, if anyone has any recommendations for a Crohn's specialist in Houston, that would be helpful.   

MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/26/2008 12:08 PM (GMT -7)   
 
My new PCP gave me samples of Lialda yesterday...I don't know what he was thinking cause my chart reads "Med allergies, Asacol, salicylates, most abx and pain meds", but he insists, so I insist that I will look into it...He actually gave me the insert that the drug rep gave him...He knows me quite well allready...
 
I sat in the waiting room and read it, all of it, and the two things I highlighted were this...
Contraindications...Lialda is contraindicated in patients with hypersensitivity to salicylates (including mesalamine) or to any of the other components of Lialda
Precautions...Mesalmine has been associated with an acute intolerance syndrome that may be difficult to distinguish fram a flare of IBD. Although the exact frequency has not been determined, it has occurred in 3 % of patients in controlled trials of mesalamine or sulfasalazine. Symptoms include cramping, acute abdominal pain and bloody diarrhea, sometimes fever, headache and rash...If acute intolerance is suspected, prompt withdrawal is required.
 
FYI...Under clinincal pharmacology it states 'the mechanism of action of mesalamine is not fully understood, but appears to be topical...Goes onto state the possibilities of how it could work...
 
Now for my story in a nutshell...I was diagnosed with UC in 1995 after using Motrin and Zoloft for a neck injury...My GI convinced me to use Sulfa (reaction occurred immediately), went on to Asacol (began having muddy, tarry stools, abdominal swelling and others I care not to reall) the GI swore it was not from ASacol but a worsening of my condition...I went on and off like this for 10 years when in 2006 I developed that ACUTE INTOLERANCE and almost died...It was still my disease which he then deemed Crohn's (his opinion) yet pathology never concurred and I was hospitalized for the first of 3 times...They induced an infection that went throughout my body, ordered a powerful abx that caused my early demise (haha still here) and then mistreated me to the point I developed DVT's...all avoidable if they would have admitted the initial reaction to the Asacol...BTW...to prove it once and for all, I had the nurse give me two asacol while the doc stood at the end of my bed...within 10 minutes, he returned to my sheets full of blood and vomit...He then advised my nurse I was intolerant to Asacol...
 
Does this sound familiar??? Why are these doctors covering up these reactions??? I have had to learn the hard way, I hope your SO does not...Learn more about everything, know what your body needs and fast...In my case, I relied on experts and they nearly killed me and covered it all in the process...They are well versed in this now to protect their butts.
 
While this may not be the case for your SO, I felt compelled to share part of my story...Many do not live to tell the tale (I was told that by my attorney along with several nurses on that floor that witnessed what happened)...They do this for profit...
 
I hope this is not what you and your SO are going through, but be aware it is happening everyday...It happened to me...
 
PS...The reaction to Asacol to me felt like a back-up thena blow out...The pain unmistakeable and unbearable...My pancreas was failing, my liver was swollen, my body was toxic!!! My GI wanted me to have Crohn's so he could get the credit for the Remicade sale...woohoo...Today I am drug free for Crohn's (which they told me I wouldn't survive without the Cade) and here 18 months later I am warning others of what these creeps are capable of...Again, I hope this is not the case for your loved one...My husband suffered so watching me die, then nursing me back, without his insistance to remove all the drugs, I wouldn't be writing this today)...
 
Good luck, please let us know how things are going...Be careful...Peace~MamaDove
 
PSS...I am tossing the Lialda samples in the trash as I write this... tongue

Post Edited (MamaDove) : 6/26/2008 1:16:37 PM (GMT-6)


NA_NA
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/26/2008 8:20 PM (GMT -7)   
Thanks Mama...what do these docs think, we are rats? Anyhow, I am so grateful that you survived and are kind enough to share your experience. This sounds way too familiar. Of course, the Dr.'s would never confess it was the drugs causing such a severe reaction. We will keep you updated. Our hope is to get out of here tomorrow and take it very easy....By the way, you really confirmed one of fears I had regarding the drugs. We will keep a very conservative approach to taking any other prescribed meds. If a pill makes the symptoms worse, how can the FDA approve it? I am not even sure if Crohn's is the right diagnosis...and the politics between the doctors is an entire different story. We couldn't get our doctor to transfer us to a different doctor for further investigation or to a different hospital....it seems they are looking out for each other before the patient. Thanks again for your insight...be blessed!

MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/27/2008 6:00 AM (GMT -7)   

Ohhhhhhhhhhhh KWAA,

I was afraid of what you might tell me...The politics...More familiarity...If they will not entertain a transfer of records nor advise you of another hospital that's the beginning of the 'cover-up'...Exactly what happened to me...They held out as long as they could, diagnosed me Crohn's so severe I would die without Remicade, having my records fudged (re-written) to reflect what they preferred and left out ALL the info regarding any complaint about reactions and such...My husband came to my rescue...he proved it to me that I was being poisoned and made worse for profit...AND along came a nurse that sat by me and whispered "Get out of here, you will not survive unless you pull these IV's, get some strength back and GET OUT"...My angel!!!

As far as being rats...I felt like a lab rat with one added benefit...I had FULL health insurance...They covered everything!!! No questions, in fact they paid in one month after each hospital stay and had the gall to lie about it when I questioned them...They denied it until I told them I had the computer printout from the hospital computer of what was actually paid...CAUGHT!!!

If I had to do it over again, I would have went to a private hospital, not a non-profit state funded ( didn't know of such differences then) and I am sure I would have had completely different results...My other local hospital knows my story and says they hear stories like that everyday from that other hospital...Why am I the only one that has a problem with why this is allowed to continue???...I will be writing a book about my experiences with my illnesses for the past 15 years as well as a few chapters on my hospital nightmare...My idea for the title is SUNSHINE, RAIN and a hospital in Maine...My husband sees it differently and would like the title to be CAPITALISM: How it almost killed me!

KWAA...we unfortunately are not the only ones dealing with this and these illnesses have much leeway as far as proving the diagnosis, they seem to use all that leeway to make big $$$$...Heck, my lil town here has 4 GI's and 'owns' an entire floor in the hospital...During my 3 stays, they were either 'dead' or full of newly diagnosed Crohn's patients...These ego maniacs need to be eradicated but until then, we need to hit them where it hurts, in their pockets...Take your 'business' elsewhere and get what your SO truly needs...It may take some time and more pain than he is willing to go through but noone is going to help you but YOU...Do not rely on them...I remained sick for 15 years because of the experts and EVERYONE is aware of that fact yet they go about their lives, esp. the hospital workers cuz they need their jobs...

One more thing to prove what I am telling you is the truth...One nurse that ran my first IV was sent to me, I am sure of that...My body so badly dehydrated, they couldn't get a vein but HAD to in order to get me the medicine "poison" the doctor said I needed to live...She tried everywhere to get a line...The burning of the needle prick was torturous, I still feel, see and hear it...I got up enough strength to point to her where to put it, she agreed to try...She was shaking and began to cry (there was no denying that I was dying and she knew me well from the last visit and we had a connection) With no strength, I reached for her shoulder and said to her "I will help us get through this"...As the needle went in, her tears fell on my other hand...It was over...Actually that was just the beginning for me...the levaquin that poisoned me went through that line and I was never the same...I saw her a few months ago...She stopped me, grabbed onto me and began shaking and crying...She knows what she was a part of...I said "are you still there", she replied "yes honey, I need the job"...So as much of an angel as she was that day in my life, she is allowing more pain and suffering than anyone should ever go through...I am saddened by this but someday she will 'learn'.

Do what you must, find the strength to find the answers...I believe you can overcome this but do something today...Don't wait another minute...Peace~MamaDove


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/30/2008 3:41 PM (GMT -7)   

KWAA...

Haven't heard back from you...

Was wondering how things are going?

Any improvement?

Hope to hear back from you soon, with good news~MamaDove


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 6/30/2008 3:57 PM (GMT -7)   
Don't throw the Lialda away, I want them!! :P
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)


NA_NA
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/30/2008 7:41 PM (GMT -7)   
Mama...thanks for checking in. We are home from the hospital and taking it very slowly.  Right now, he is opting not to take the Lialda, so far, so good.  We are also following the "Self Healing-Crohn's and Colitis" book, which is a complete change in diet, but seems much healthier and is not hurting anything.  Will keep you posted and thanks again for your useful information.  I will try to write more when time permits. :)

MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 7/1/2008 4:20 AM (GMT -7)   
 
Great decision...Diet may be just the thing for him...
 
Wishing him a speedy recovery...
 
Take good care of eachother~MamaDove

NA_NA
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 10/5/2008 1:56 PM (GMT -7)   
Just a brief update, after finally getting out of the hospital and into a new doctor's office, the picture was still very unclear as to what was going on with my SO. He took the (forget the name) advanced test to determine whether he had Crohn's or Colitis, and he tested negative for both. With diet, symptoms were still not improving. The only thing that helped, although not 100%, was Prednisone. He got scoped once again and they determined it looks most likely to be UC. Also, some diverticulosis was apparent, not sure if that is a newly developed problem or just not seen by the 1st Doc. He started smoking again recently and the symptoms seem to be better. Now he decided to try Asacol as a last attempt, and after a week, so far, so good-things seem to be improving greatly. We will take it slow, and if any noticeable signs show up again, he has promised to stop immediately. I just pray all will be okay.
How are things going for you Mama? Hope all is well.

Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 10/5/2008 2:54 PM (GMT -7)   
I had been diagnosed with Duodenitis a few years after having been diagnosed with UC AND after having had my colon removed (j-pouch surgeries). They had determined this either through the camera-pill test, or that one test with the tube through your nose where you have to carry around a monitoring device for like 2/3 days (sorry I'm really bad with test names!) I can't remember which one. Either way all I really do remember is him saying that my Duodenum was pretty inflamed and something about my sphyncter (spelling?) not functioning properly(that being a chronic problem). Now I didn't have any vomiting or blood, but my problem was regurgitation - after practically everything I ate! I remember him prescribing me Reglan, and I remember it getting me very depressed for some reason, so I stopped it after a while.
The only thing that worked for me, and still works heavenly for me is Famotidine which is a Pepcid in a pill form. I take this every night before I sleep and if I forget it one night I'm regurgitating everything the next day. Its seemed to have gotten better though over the years (the regurgitation) and my docs always insist I take Prevacid too but most of the time I don't. I have upper abdominal pain all the time - sometimes really strong where I have trouble digesting - but we've never really spoken about the whole Duodenitis thing again so I'm not sure what the deal is with that - wether its a chronic thing, if it gets inflamed on and off..don't really know!

Anyways just thought I'd share that withy you and also wish you and your husband some relief as far as finding the answers and all. Hang in there and take care.
Dx w/ UC 2000;
J-pouch surgeries in 2002 - colon removed except for last tiny part connected to rectum which keeps inflaming;
Currently in remission from August hospitalization and tappering off Pred. (now 7.5mg);
Remicade, Cymbalta, Prevacid, Famotadine, QVAR,
Auto-immune disorder, anxiety disorder, mild asthma (chronic bronch), & Crohns related arthritis.

Jessi

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