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Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 9/28/2008 8:46 AM (GMT -7)   
Everyone talks about their pain and discomfort.
I have never had any pain with crohns. I'm wondering if this is even a correct diagnosis.
The only symptom I have had is bloody stool. I went to the gastro in June and had a colonoscopy. Most of my colon was pretty inflamed so they started me on prednisone and asacol. Within two days I was much worse. I called and they upped my prednisone but I think I was having a reaction to the asacol. I did seem a little better from upping the prednisone for a week or so but then got really bad. I was having 20-30 mb all bloody water basically daily for weeks and a low fever. I kept telling the gastro I was worse but apparently they didn't take me seriously.
I ended up going to the ER on my own. They kept me there for twelve days and did another scope and I was tremendously worse. This was about two months after the first scope. The put me on sulfasalazine, an IV steroid, and started remicade. I was so malnurished that they ran a pic line in me and gave me TPN for four days.
All this time they told me my upper GI and CT scan are totally normal, nothing wrong with me other than the colon being so inflamed. I never have any pain anywhere no matter what I eat or whatever. I don't even have pain with bm.
I'm starting to question wether it's even crohns at this point or I got inflamed originally from a virus, fungus, bacteria, parasite, whatever.
The asacol definately made me much worse than I was when I originally went to the gastro.
I have read many posts and different sites on being tested for a specific crohns gene, has anyone here had that done and how does it work?
If my problem isn't actually crohns, I would like to find out the cause and how to treat it without doing the remicade.
After my first remicade treatment I got thrush.
After the second one I got thrush again, rash on my face, spots they called petechaie sp? I also have muscle and joint weakness that I didn't have before.
They are saying it's all from the prednisone but I never got this before any remicade treatments and was on pred before them so I really feel I'm having a reaction to the remicade.
However they measure inflamation, mine was fourteen in the hospital about five weeks ago and now I'm down to two. The treatments have definately helped, I was having less bm the day after first infusion. I've had no blood or D for weeks and go once or twice a day now.
I am really concerned about these side effects, they are listed on remicade as serious and to contact your doctor immediately but the gastro says it's from the prednisone?
Any help here would be appreciated.

Thanks,

Miss

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/28/2008 9:44 AM (GMT -7)   
Hello
I want to Welcome you to HW

You seem to have a few valid concerns IMHO about your DX but I I will leave that for the more educated in this DD ( darn disease)..
I am still learning daily about Crohns and the effects it has on us as a whole........
I can tell you that I am on opiates and I have severe pain at times.......
Also anxiety and Panic attacks but had them prior to DX of crohns

I want to let you know that wknds are sometimes slower so dont feel you are being ignored your post will be answered..........

I have not taken remicade so I cannot help you with that

Jeesh lol
I have not been too much help at all
Have I .......

I do hope you will check out back threads on back pages and Resources as well

There is also the veterans that I know will have answers for you and those on or that have been on remicade

Glad you found us here and I DO hope you STAY with us This is a great community of caring and empathetic people that will help you if at all within their power.......

Take care and
God Bless

LYN


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

Post Edited (Howlyncat) : 9/28/2008 10:49:19 AM (GMT-6)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/28/2008 1:14 PM (GMT -7)   
Hi Welcome to HW. I guess most pain talked about here is craminp pain and if your inflamed something has to have caused it. The scan porbably shows no restricted areas tat can cause blockages. Sounds like you have responded good to the Remicade some don't. Hope you feel better and stay that way for awhile. I know med decisions are hard to make and it pretty much ends up being a personal choice between you and your GI. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 9/28/2008 2:11 PM (GMT -7)   

Wow, I am not the only one to get thrush from remicade. They told me it was from the pred., I have taken pred. for years on and off and NEVER got it until I started the remicade. I have stopped the remicade. The mouth stuff is painful and I just hate it. I have had it 3 times and it's always after the remicade.

 As for pain, I only get the cramps on my right side when I have the big D.....it does hurt very badly. I take percs. for it and go to a pain doctor.

 Good Luck.....I feel your pain.

   SherriB64@comcast.net

email me if you want, I always love to chat with others.


 


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 9/28/2008 2:12 PM (GMT -7)   
When I had my sever GI bleed in 2006 I had no pain either. They kept wanting to give me pain meds in the hospital, but I didn't have any. I was gushing blood rectally at an alarming rate, but no real pain. Maybe a slight D cramp here and there. But they thought I should be in sever pain! They found a deep ulceration that the blood was coming from in my terminal ilium. As well as inflammation.

I've had flares where I'll be in a lot of pain. But not always. I think that can be hit or miss, and depends on what's going on in there.

So I hope you find a treatment that works for you. It can be hard. But welcome to the board! You'll find a lot of wonderful helpful people here!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/28/2008 2:13 PM (GMT -7)   
The Crohn's gene is now well over 30 different genes and counting. I don't know of any gene testing being done on patients. They don't have any treatments for the genetic part of the disease, so there is not much point until they start individualizing treatments based on genetic profile.

Thrush is a yeast based infection. Did they give you any treatment for it? If not, you might look in a health food store for Saccharomyces Boulardii, which is another yeast and is supposed to help eliminate Candida albicans. You may also want to greatly reduce your starch and sugar intake until it is under control. This is a fairly common result of Remicade, since it reduces your immune system's ability to fight off such problems.

I looked up the webmed write-up on Remicade and it specifically mentions muscle weakness and a side effect that you should notify your doctor about. Not being a doctor, I don't know why your doctor would wave off your concerns, but maybe you should be looking for a second opinion? It is true that Pred can also cause muscle weakness and the Remicade warning does say that it is a rare side effect - so that would account for the doctor's attitude, but it does not address your concern about it only happening after starting the Remicade.

Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 9/28/2008 2:36 PM (GMT -7)   
I cut out sugar and starch a few weeks ago so it's not from that. They put me on losengers for the thrush, but that's really the least of my problems. I also thought the eye changes were from the moon face from pred. but now the puffyness has gone down with the taper and I still have some eye pressure and vision changes going on so don't think that's from the prednisone either. I think I'm going to call our insurance nurseline about this stuff and a second opinion. I'm wonderring if I stop the treatments but then have a flare if I can restart them later if need be. The gastro says I need them every eight weeks for the rest of my life. Has anyone just used them for maintenance when flaring?

Miss

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/28/2008 5:54 PM (GMT -7)   
I do not have any abdominal pain with my crohns, and I never have had. Do I question my diagnosis? Absolutely not! I've seen the scope pics, and biopsy reports....and unfortunately, I have had pain from my numerous abscesses and fistulas, and fissures.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/28/2008 8:21 PM (GMT -7)   
My doc said the only way to know if I definitely had Crohn's and if it was active was from the biopsies taken during the c-scopes. Have you seen your pathology reports? That should give you a good idea if you have crohn's or not. I'm really glad for you that you don't have pain and I hope it stays that way for you. My pain was only really bad when I had a really bad stricture, and most of the pain was cramping, even during a flare.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/29/2008 2:17 AM (GMT -7)   
Hi and Welcome to HW
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/29/2008 7:24 AM (GMT -7)   
I did not really have pain when first diagnosed either. That came later. Just like you it was bloody stools/urgency.

Also like you, Asacol made the bleeding worse. I went through with a couple docs on it, and they seemed dismissive. I finally tried different types of the ASA5 drugs and convinced him that it really did make it worse. It does for a very small percentage of patients.

Hang in there. Remicade was a life-saver for me for 2 years.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/29/2008 12:30 PM (GMT -7)   
Hi! Just adding my voice to welcome you to HealingWell. It sounds like you are having a really rough time of it, I cannot understand why you aren't in horrible pain with that much inflammation. If I have more than 2-3 centimeters of inflammed bowel I get terrible cramps & pain. We are all different though, so abscence of pain does not mean you DON'T have CD! Be careful of that thinking..

Sincerely,
Matthew

kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 9/29/2008 12:52 PM (GMT -7)   
Hey and welcome! I had lots of side effects from the Remicade and have in the last 2 months started on Cimzia. I haven't had any from it. (knock on wood) My dr said that most people react fo the biologics because of the mouse protein it's made with. I guess this new med is made differently. I agree with the others about questioning your dx. I went through a lot of denial when I was first diagnosed and all it got me was disappointment in the end! I just joined this forum recently, and reading all the posts realize how many people I can relate to. Keep coming back for support, it really helps!! Wishing you the best!!
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, to many pain meds to list
 
Currently on-Cimzia, Cymbalta, and Klonopin(RLS)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/29/2008 6:24 PM (GMT -7)   
Hi Crohn's can cause some eye problems I had some this sping which did clear up with about two eye ointments and drops .I had puffy ness too. Maybe see your Dr' about it. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 9/30/2008 2:15 AM (GMT -7)   
Miss3,
I have to admit that I became very jealous reading your post and your not having any pain. I do on the other hand feel a deep sympathy that you have to have this disease. As you are probably finding out, Crohn's disease can manifest itself differently in each person. Some with mild cases do not even have to maintain it with medication, while others have so many medications that it baffles the mind. My particular case started with extreme abdominal pain and bloody bowel movements. My ER. had both my appendix and gallbladder removed in the matter of 3 months because my crohn's would not show up on any scopes. After a year of suffering and getting an awesome Primary Care Physician whose specialty is Internal Medicine, I was hospitalized for 3 weeks and diagnosed through a pill test. I have yet to gain a full remission, but I my primary problem has been the pain associated with the arthritis and intestinal inflammation. At times, the arthritis is so bad that I can barely walk or function and must rely on pain medication to have any quality of life. This pain did not come on all at once, but came on gradually. I should probably mention that I am on 29 years old and was a very athletic and active outdoorsman before all of this happened.
I do not say all of this for sympathy or to be negative, but just to show that while you may not have pain now, it does not mean that you have been misdiagnosed. This is an autoimmune disease and can attack more than just your bowels. It can affect your skin, eyes, joints, muscles, and even you sinuses.(my biggest surprise when I had to have surgery for this). I hope that you are able to continue to have a pain free life from this disease, but do not neglect your diagnosis because it is not there now. Good luck and welcome to the forum.
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