Crohn's Story...looking for some answer

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Mary Tzagarakis
Regular Member


Date Joined Feb 2009
Total Posts : 25
   Posted 2/2/2009 11:16 AM (GMT -7)   
Hello, I am new to this site and I have had Crohns since I was 15 until the present which is 42 years old. I have had 2 surgeries one to resection my bowel and that did not work out very well, as I got Peritonitis and therefore had to have a temporary ilieotomy. That put me down for many months 10 years ago, but after the 3 month recovery, and the reversal of the pouch I finally started to feel better. I actually didn't have a Crohn's disease attack for 8 years, nothing, no eating problem, it was amazing....but it's nasty head is back. It started about 2 years ago...my mother got very ill with Ovarian cancer and since that time, my Crohns starting acting up. It began with rectum problem..fissure, abscess. I had a surgery for both and they seemed to go well. Currently they have me on Imuran, Predisone (20mg) and Inovane (to sleep). I wasn't too bad for a while, and then my gallbladder attack came, which they did many tests before they decided to do surgery, as I am not a very good surgery patient. I have a wonderful surgeon and he was against it until he could find out if my gallbladder was severely inflammed which it was and he did the surgery, amazingly he could do it lap with all my scars he was amazed he could do it.

But now, I am having pain, it seems to me to be a partial blockage and something is not right with the area where my gallbladder has been removed. I do get that dumping but I have meds for that, but I am so weak, unable to work, as I have been off work for 6 days with the feeling of no energy, and I mean none. Is this normal? I was wondering whether I should go on REmicade but I am concerned about the side effects.

This week I am going in for a CT Scan on my abodmen, pelvis with a contrast A and my surgeon is not sure what he would be treating me for, cause all my bloods came back normal, even white cell count was good.

And as you all know with Crohns, it can also be depressing having your entire family looking after you, you feel like a second class human being.

So that is my short version of the story. I am wondering if anyone can help out with their stories and what worked for them....

Thanks for taking the time to read.

Mary

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/2/2009 12:00 PM (GMT -7)   
How long have you been on the Imuran? The reason I ask is that can cause some severe fatigue itself. Also, wondering if you have had your B12 checked? I have had 2 resections myself and must take B12 shots bi-monthly now or else I get really really tired.

You seem to be on good meds to help quiet your flare, so am wondering if its either the Imuran or need for B12.

Welcome to Healingwell by the way, and do keep us posted on what the CT shows.

Good luck,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Mary Tzagarakis
Regular Member


Date Joined Feb 2009
Total Posts : 25
   Posted 2/2/2009 12:24 PM (GMT -7)   
Hi There:

I have wondered if it is Imuran. I take 3 tabs a day at 50 mg each. I wonder if it is Imuran but if I stop it I will be concerned as my doctors will not be very happy. They did do my blood B12 and it was fine, which is strange considering I don't have a ileum. Hopefully the CT Scan will give me some more answers...it is awful, lying in bed all day and not being able to do anything. I don't remember it being this bad 10 years ago for me....we will see.

That's for responsing.

Mary

Mary Tzagarakis
Regular Member


Date Joined Feb 2009
Total Posts : 25
   Posted 2/2/2009 12:45 PM (GMT -7)   
Did you ever try Remicade? It is suppose to any good? You had two resections yourself, both small and large bowel? Did you ever have your gallbladder out? Everyone is speaking on these Probotics, I wonder if that is something I should be taking..

Mary

gutless1der
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 2/2/2009 1:49 PM (GMT -7)   

Hey Mary,

I hear ya girlfriend!  I've had Crohns for 25 years, I'm 45, so that's most of my adult years.  I started out on the usual drugs: prednisone, azulphadine, asacol, pentasa.... you name it-Ive probably taken it.  Except for Imuran.  I've been receiving Remicade infusions since 1999.  Sometimes they work better than other times.  In 2004, I lost one of my sisters to cancer, and three months later, I lost my mother.  I don't think they have a drug for that kind of thing.  Anyways- if you haven't tried Remicade, maybe you should ask your GI guy about it.  It's been around for a long time.  That's what I liked about it.  Some of the stuff that comes out today will kill you 6 months from now even though they say it's safe.  And so far, after 10 years, I haven't grown a third eye or anything like that.  However, it does seem to have lost some of it's umph.  I started out getting infusions every 8 weeks.  Now I'm down to every 4 weeks, and that is why my GI guy wants me to have surgery.  This will be my first surgery for Crohns in 25 years, so in that aspect I feel very fortunate.  I'm new to this site as well, but I can tell you-it's the best thing since sliced bread! I have a great support system in my family, but even though they understand, the folks here feel your pain-really they how you feel. Sometimes it helps me to just have a third party listen to all my whines and cries, then I'm good to go for a while.  You should try that too.  Let me know how it goes.


Mary Tzagarakis
Regular Member


Date Joined Feb 2009
Total Posts : 25
   Posted 2/2/2009 3:54 PM (GMT -7)   
Wow, that's amazing no surgery for 25 years, you are doing something right. Sorry to hear about your sister and your mother. Unfortunately as you know it is a wound that never heals, never.

I may try Remicade but I thought you had to be on Imuran in order to have Remicade. We will see. Tonight I went to an acupuncturist....amazing, he made me feel better, imagine that without pain medication. I thought I would give it a try and see what happens...so far so good. I would love to get off all the medications, I really do not like them at all.

If you get surgery, from my experience...for 8 years I was Crohn's disease free, I could eat anything, always had energy, it was amazing, except for the complications right after surgery...8 years pain free is really great.

Mary
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