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navalcorpsman
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/25/2009 11:28 PM (GMT -7)   
So simply here is my story. 
 
Dx w/CD 12 years ago never was put on meds.  Occassionally Prednisone step-down when I had minor flares but other than that I adjusted my diet and tried to modify my behavior (keeping stress low, etc.).  In 2007 I was hospitalized for a severe flare that my now GI thought that I might have to have surgery for.  I said BS and listened and agreed to his game plan for meds and keeping me in remission (or at least from making 5-7 trips to the restoom daily).  He put me on Pentasa 3 grams per day and that was all.  The occassional Entocort treatment and cipro/Flagyl combo as needed for minor flares.  Entocort because he does not like prednisone.  So due to several minor flares last year he figured that I should be on Imuran.  I said NO WAY.  I know the potential side effects and he said to think about it and let him know when/if I was ready.  Well needless to say I accepted his invitation.
 
So all was well and good for about a month and a half while I started the new "miracle" drug and then it happened.  I went to work and a coworker was not feeling well.  Slight cough.  By the end of the day I started coughing.  By the end of the next day I had bronchitis and 2 days later I was admitted to the hsopital with full on pneumonia.  Spent a week in the hospital with so many types of antibiotics and anti everything.  I was confined to my bed for the first three days becasue of all the meds they were giving me.  And it was at that point that I decided that I was not willing to continue with the Imuran if that BS was going to continue to happen.
 
It is worth noting that I did seek medical attention for the bronchitis and that I stopped taking the Imuran that first day.
 
Any sugggestions/advice.


Only you can change your life.  No one can do it for you.
 
Dx w/CD 12 years ago.  Syptoms for two years prior.  No meds until 2007 when I was hospitalized with a severe flare-up.  Found a wonderful GI and since have been placed on:  Pentasa 4grms per day, Entocort prn, Cipro/Flagyl combo prn, tried Imuran but scared to go back.

Post Edited (afrdh) : 10/26/2009 12:37:18 AM (GMT-6)


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 10/26/2009 12:47 AM (GMT -7)   
well i suspect that you were infected about the same time as your co worker and just got sick with pneumonia as a result. Imuran according to the medical literature does not really kick in for 3 months . and stays in your system a long time as well so stopping it when you did, did no good. even if your coworker coughed right in your face it would not have made you sick that quickly. the meds you take is your choice but as a 26 year CD veteran, and at least 10 years on Imuran in the past, maybe give it another shot.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/26/2009 5:51 AM (GMT -7)   
I agree with Randy, I think it was just a coincendence you got sick right at the same time as you started Imuran. Many folks on this forum have had their Crohns successfully maintained for up 10 years or more by taking Imuran or its sister med 6mp. You really should be on some kind of maintainence med at all time. While you are busy trying to ignore your Crohns, it is still doing its damage on a microscopic level. I learned that the hard way because I did much like you are and I ended up with an emergency resection because of a completely obstructed bowel. Had no clues beforehand that that was going to happen either. I hope you will get back on the medications soon or your GI will be right and you will end up having to go under the knife. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 10/26/2009 6:57 AM (GMT -7)   
Welcome to the forum!!

I am going to agree with randy and nanners....I was a 10+ year Imuran subscriber and never experienced an increase in illnesses. I think yours was an unfortunate coincidence:(

I became a hand washing fanatic and did stay away from sick people (when I knew they were sick) but didn't alter my life any other way!!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 10/26/2009 8:20 AM (GMT -7)   

Welcome Navalcorpsman!

I wonder about how much 6MP actually supresses our immune system. If CD is an auto-imune disease, then is the 6MP just lowering it from sky-high back down to the normal range? I remember reading other posts about the H1N1 and several people said they didn't get sick more frequently when on 6MP. Any thoughts?


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/26/2009 9:04 AM (GMT -7)   
I have been on 6MP for over a decade. At the beginning of that time frame I was raising my daughters and actively involved at their schools, so I was around small children all the time. Basically human germ pools. I was not more sick than any other parent, even when my kids were sick and coughing all over me. I do believe we need to take extra precautions because, like you, if we do get sick, it can become worse, quickly. BUT, just because we are on an immuno-suppressant we aren't automatically going to get every bug out there. Also, I don't think that the rules of incubation are thrown out the window for us. You simply can't get sick from a cold virus in a matter of a few hours. You had to have already have been infected, so please forgive your co-worker.

Like Nanners, I too went for a very long stretch untreated. I spent 10 years undiagnosed, so I was un medicated. I then spent the next 10 years having multiple resections trying to undue the damage. I will never go without maintenance medication again. While we are busy living our lives thinking that CD has gone away, it is working its microscopic magic inside us waiting for the perfect time to come out and play.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


navalcorpsman
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/26/2009 9:32 PM (GMT -7)   
 I completely understand about needing to have something that puts my CD in remission.  The problem that I have is that when I took the Imuran for the month and a half that I was on it my neutrophil count dropped to 22 (this is verified by blood draws in the hospital while I had pneumonia).  Ones neutophil count should be around 50.  Now knowing that I was on an immunosuppressnent I understand and expected a drop in the white blood cells (since they are the ones that help to fight infections; among other things). 
 
While I was on the meds (Imuran) I experienced a normalcy to life that I had not experienced in the last 14 years.  But the hospital visit and subsequent low neutrophil count scared me.
 
I saw a GI doc a number of years ago that stated as long as I watched what I ate and kept my stress low then surgeries were not in my future.  He did not believe in medds unitl someone really needed it.  Over the last 14 years I have been treating minor flares with Prednisone 10 mg in a step down manner (3 for 5, 2 for 5, and 1 for 5).  This seemed to work well and I would then modify my diet and restrict myself until I was sure that the flare was over.
 
I completely understand about the microscopic level as some have stated.  However, upon completion of my scopes everything is still holding steady in my ileum and not spreading.  With no signs of any serious abnormalities (e.g strictures, fistulas, tears, etc.).  I do have some scarring but from what my current GI has told me it is to be expected with CD.
 
So here is what I have decided.  I am going to talk to my GI next week.  Stay off the Imuran until then and then hopefully we can work something out.
 
Oh, by the way.  The type of pneumonia that I had was chlamydia pneumonia.  Not the same chlamydia associated with an STD.  Upon current blood work to see my antibody levels....................I have none.
 
Nanners specifically.  While you generalize my situation as ignoring my CD, I in fact am not.  I, as well as most that are in similar disease states CD or not, only want whats best for themselves/ourselves.  No more no less.  What may have worked for some may not work for others.  The fact that Imuran reduced my neutrophil count to less than half in a matter of a month or so is freaky enough but then to find out that I did not develop antibodies to the pneumonia (benefits of the Imuran turn  ) is peculiar to say the least.


Only you can change your life.  No one can do it for you.
 
Dx w/CD 12 years ago.  Syptoms for two years prior.  No meds until 2007 when I was hospitalized with a severe flare-up.  Found a wonderful GI and since have been placed on:  Pentasa 4grms per day, Entocort prn, Cipro/Flagyl combo prn, tried Imuran but scared to go back.

Post Edited (navalcorpsman) : 10/26/2009 10:44:28 PM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/26/2009 10:00 PM (GMT -7)   
Hi, Navalcorpsman, and welcome to the forums.

You are very welcome here. I'm having a bit of a brainless afternoon, though, and was wondering if you could perhaps clarify what sort of support you're seeking from us?

As I said, I'm a bit tired and foggy, so am not sure whether you're simply wanting reassurance that your decision *is* the right one, or whether you want some discussion and debate to help you determine *whether* your decision is the right one, or whether you're hoping we can advise you on alternative medications you could try, or something else...?

Thanks, and welcome again,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


navalcorpsman
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/26/2009 10:07 PM (GMT -7)   
Ivy6 I appreciate the inquiry. I suppose the only answer I can give is that I am searching for what is right for me. In an open, unobtrusive environment. Whether that entails advice, guidance or just simple discussion.
Only you can change your life.  No one can do it for you.
 
Dx w/CD 12 years ago.  Syptoms for two years prior.  No meds until 2007 when I was hospitalized with a severe flare-up.  Found a wonderful GI and since have been placed on:  Pentasa 4 grams per day, Entocort prn, Cipro/Flagyl combo prn, tried Imuran but scared to go back, Osteopenia, B-12, modified diet (constantly), Multi-vitamin/mineral


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/26/2009 10:13 PM (GMT -7)   
Just curious about your diet... What modifications have you made?

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/26/2009 10:15 PM (GMT -7)   
Thanks for that, corpsman.

I agree with the others that some sort of maintenance med is important.

There are injections that can help neutrophilia (sp?), if this is something that concerns you. You might like to discuss this with your doctor.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/26/2009 10:16 PM (GMT -7)   
Ooops - as I said, I'm brainless this afternoon!

I think I meant neutropaenia.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


navalcorpsman
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/26/2009 10:28 PM (GMT -7)   
My diet varies.  I eat mostly non beef protein sources, I limit roughage (fruits/vegatables) as those tend to send me into a terror.  I eat more frequent small meals daily. When I was actively working out (I was an amateur bodybuider for quite a few years) I would supplement my three to four solid meals with liquid protein supplements to make sure that I was getting enough protein.  I have pretty much given up caffeine.  Drink mostly water and sports drinks.  No spicy foods.  Not too much salt (wife monitors that for me).  And as soon as I am cleared from my pulmonologist (following me because of my pneumoniae) to go back to the gym I will.  Its been 3-4 years due to flares, moving, school, work, etc.
 
 
 
 
Keeper said...
Just curious about your diet... What modifications have you made?

Only you can change your life.  No one can do it for you.
 
Dx w/CD 12 years ago.  Syptoms for two years prior.  No meds until 2007 when I was hospitalized with a severe flare-up.  Found a wonderful GI and since have been placed on:  Pentasa 4 grams per day, Entocort prn, Cipro/Flagyl combo prn, tried Imuran but scared to go back, Osteopenia, B-12, modified diet (constantly), Multi-vitamin/mineral


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 10/26/2009 11:12 PM (GMT -7)   
Imuran caused me a lot of grief. So did prednisone.   I AM NOT A VITAMIN FREAK BUT
vitamin-D has been shown to be AMAZING to prevent and fight diseases especially respiratory diseases.  Vitamin C does NOTHING!   Check the current issue of "Consumer Reports Health Magazine" for information on Vitamin D.
Now for the weird part of my post:
I am frustrated because I can't get anyone on this forum interested in my theory about Blue food coloring.  FD&C Blue 1  (Blue1) is helping me I believe.  There has been a recent accidental discovery that Blue1 will stop the progress of cell damage in Spinal injuries by interfering with the activity of the molecular receptor P2X7. Cut and past the following link to see the study
 
Well guess what?  P2X7 causes the inflammation in Crohn's.   I put two drops of Blue1 food color in 6 ounce of water and drink it down first thing in the morning.  Then three drops in about 20 ounces of water that I sip all day.  Finally two drops of Blue1 in 6 ounces of water right before bed.  I feel good and since this is done ORALLY, IT HASN'T MADE ME TURN BLUE anymore than drinking gatorade would.
It is driving me nuts that I can't find anyone interested in this here on the forum.  I could be wrong but what is the downside.   Check with your doctor to make sure blue dye is safe for you and your medications first.  I acknowledge that I could be wrong and that Blue1 doesn't work but...............
 
It is great that you are watching what you eat etc.  I got sick (colds, etc) less often while taking prednisone and imuran than I did before I used those drugs.  I am CERTAIN it was the vitamin- D.   I take a 400 iu in the morning and a 400 iu at night.  sometimes I take 800 at night if i don't feel quite right.  Read that "Consumer's Health".    Good luck.   Guy

Post Edited (FunGuy) : 10/27/2009 12:16:50 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/27/2009 4:50 AM (GMT -7)   
Hello Corpman,
While I hate to see you have this disease, but it is always nice to see a fellow sailor. I am not a fan of anything that is not backed up peer reviewed academic journals, so the blue dye recommendation is not something that I would do. However, I do strongly encourage people to stay on top of their blood work, and that does include their vitimen levels (b-12, vit d, Mg, etc), because this can also cause the neutropenia that you discribed. As a Corpman I am sure you know this quite well, but I think this disease contributes to my absent mindedness so I just wanted to make sure I am covering my bases here.

I would also guess that your issues with Immuran (especially given that it take months to reach a theraputic level from my understanding), might be in strong part due to the infection you were exposed too.

I currently take 25 mg injections of MTX weekly (it is a very old drug and people have stayed on it for decades with RA) and have for several years now, it has been the only thing that has put my disease remotely in remission (tried sulfa meds, 6mp, immuran, humira, remicade, etc, but only MTX got down from 30-40 stools a day to about 10-12). Luckily it seems that your disease is not sounding as severe, however I wonder if you have done a recent pill camera, because with that fast of deteriation while it could be just the infection or your reaction to immuran (who knows), but I wonder also if the flare it seems like you were in perhaps contributed to it as well. If I am reading correctly (which I might not be cause sitting in the hospital right now) you feel this made you neutropenic, so the question becomes how do fix this? Is it a symptom of advancing disease or is it the med? I do not know, but I know for awhile (about 6-9 months, this actually did not correlate with the time I was on immuran) I did have to take Neupogen shots due to my crohns was doing all sort funky things with my blood work (I also ended up getting a couple blood transfusions during this time so who knows).

Basically I do agree with the others that you really might want to consider a long term med, but it is your life and your quality of life that is at stake, so do what you think is best. There are alternatives to immuran, and there are treatments for neutropenia, but my main concern is that there is no underlying issue that is causing these other issues, and I hope you get to feeling better soon.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/27/2009 6:59 AM (GMT -7)   
I have to second Funguy in that I have found great relief with Vitamin D also. It has really helped with my joint and Fibromyalgia pain alot.

By the way, Navalcorpsman, I wasn't saying you per say were "ignoring" your Crohns, it was meant as a generalized statement. Because I didn't think "I" needed to take meds either because my Crohns was supposedly mild, that "I" basically ignored my Crohns and paid a heavy price for it. Hope that clears up some confusion. I just don't want anyone to suffer what I did. JMHO

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 10/27/2009 8:36 AM (GMT -7)   
Thanks Nanners for the boost on Vitamin -D.  I can't overstate my level of confidence in Vit-D for helping to prevent infections; especially respiratory.  I hope everyone on the forum will read the current November issue of Consumer Reports "onHealth" mag.  Our disease, as you know, is believed to involve a malfunction of the immune system.  Our Medicines tend to suppress the immune system.  Vitamin D is the key to tuning your immune system up.  It does many other things as Naners said but it really SHINES at keeping you from getting colds and flus.
 
Navy I am very sorry you are in the Hospital.  Speedy recovery.  I have to disagree with you though about waiting for peer review on my Blue dye theory.  The pharma companies will not pursue this because there is no money to be made.  They can't sell you this stuff for big money because you already have it in your kitchen!  They will not launch a study out of the goodness of their hearts?!  I don't think someone who is in the hospital should try it but someone who is moderately ill with a bit of mucus and bleeding could try it?  What is the risk?  Please take a moment to read this article http://www.wired.com/wiredscience/2009/07/bluerats/   
Someone with a severe flare and leaky gut could turn blue from this perhaps and shouldn't try it without medical supervision.  Otherwise you should not turn blue, I haven't.  The rats were given the dye intravenously.  I take it orally.  So what is the risk?    Same as blue gatorade, blue jello, blue ice pops and also ANY green food has the same blue1 dye in it along with yellow dye.  By adding the dye to the water yourself, you cut out the sugar and high fructose corn syrup which is not good for us.
Any one who wants to try blue dye should Ask your doctor if you can safely try the blue dye.     Try it for a week? 
I found out about blue dye the same way I found out about Vitamin -D, by reading Science News and finding a provactive article that addressed what was wrong with me.  Two years later Vita-D is gaining more and more support from SCIENTIST not sales folks.  SURE I COULD BE WRONG about THIS BLUE DYE, that is why we need to get some people to try it with their doctors approval.  Vitamin -D is a no-brainer.  Read the article.  I will be glad to mail you a copy of mine if you wish.    Guy

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/27/2009 9:05 AM (GMT -7)   
I'm not saying that Vitamin D is the answer to Crohn's but recent research has implicated it as having a greater role in immune system regulation than previously thought. In the July 2009 Osteoporsis Reports Journal the authors concluded the following:

Thus 1,25(OH)(2)D(3) [Vitamin D metabolite] may be protective against various autoimmune diseases and may limit graft rejection by suppressing adaptive immunity while enhancing the first line of defense against invading microorganisms via upregulation of innate immunity.

Additionally, there is evidence that the incidence of Crohn's has a north-south gradient, i.e. it is more prevalent in northern latitudes as opposed to southern. Some hypothesize that this is due to Vit. D deficiencies because of less sunlight, while the helminthic therapy group (Dr. Joel Weinstock) believes this to be due to increased exposure to intestinal parasites/infections in a warmer (southern) environment and thus providing some immunity from autoimmune diseases.

Bottomline - no one knows for sure.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 10/27/2009 9:17 AM (GMT -7)   
Excellent info Former.  Just to add, since many of us have RA: "Other population data suggest that as vitamin D levels go down the risk of rheumatoid arthritis goes up"  Consumers Reports On Health magazine November 2009

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 10/27/2009 2:33 PM (GMT -7)   
I understand where you are coming from. There is a risk/benefit analysis that we all have to make... If you don't feel "sick enough" it's hard to justify taking the drugs that have the more serious constellation of side effects.

Two things you can do in addition to your current regiment--probiotics and enteral nutrition.

If you are not currently taking any probiotics, I recommend VSL#3 and Primadophilus reuteri. Both have peer-reviewed articles backing up their usefullness.

Enteral nutrition is essentially supplementing or replacing meals with something like Ensure. You can learn more about it by browsing the forum. There are also a number of peer-reviewed journal articles on the benefit of EN in inducing and/or maintaining remission.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E

Post Edited (Illini) : 10/27/2009 3:37:48 PM (GMT-6)


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/27/2009 3:11 PM (GMT -7)   
Imuran made me sicker than a dog,so my doctor switched me to 6mp,
and I tolerated that much better.
Been on 6mp for over 10 years,with no side effects.
My biggest fear is what my immune system would do if I stopped.
People all around me at work are sick all the time,coughing,sneezing,
out sick, all the time.(they all have young children,and we work at a college campus)
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole(yummy).More over the counter vitamin-D
Remission since surgery and 8-week Remicade.A real freakin medicine cabinet...
.

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