post for KRICA re: stricture or anyone else w/ advice!!! HELP :)

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Mackiesmama
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 6/14/2008 12:39 PM (GMT -7)   
Hi, I am a new poster...i read your post on strictures and I am in a very similar situation. I would love to chat!!!
 
 
Hi, my name is Julie. I am a new poster! I was DX w/ Crohn's in 96 and I am going to be 30 in August. Until recently, I have been on Asacol and Azathioprine. I have a pretty bad stricture in the transverse area of my colon. It was first found via colonoscopy in 2003 and I have had follow up colonoscopies every year to monitor it. The last 2 times my GI wasn't able to scope it as it was too inflamed and narrow. Therefore he wasn't able to biopsy the front or back...only the sides. Last time the results from what he was able to biopsy came back negative for any malignancy. But he recommended that I go on Azathioprine to help de-inflame the stricture. At that time, I was feeling pretty poorly. No bleeding...but going to the bathroom ALOT and lots of pain. The meds helped a lot and I am in full remission. I have been working out, working, and being a full time mother with no problem. I have about 1-2 solid BM's a day and am for the most part pain free. I had my follow up colonoscopy last Friday and expected to hear that he was able to get through the stricture and the inflammation had gone down. I was wrong. He still wasn't able to get in there and it was still inflamed. I woke up to him recommending a resection surgery (I have never had surgery).  I am not a candidate for larpo or stricturoplasty. Needless to say I was not happy with that! First of all, I went off the Azathioprine last week because I am planning on trying to get pregnant in 3 mth (how long the meds take to get out of your bod) and now I am freaking out!!!! I can't fathom getting surgery when I don't feel sick. If I did, it wouldn't even be up for discussion. I know what it's like to be really sick and at that point you do anything to feel normal again. However that isn't the case here. I would be basically just getting this MAJOR surgery to rule out cancer and to prevent any further complications due to the stricture. Obviously the cancer thing scares me badly and I would never know unless I was cut open if there was anything brewing in there. However my doc says that in his heart he doesn't think that it's cancerous because I have had it so long that if it was I would be dead by now! Cancer in CD patients is fierce and quick. SO that made me feel a lil better...but not much.
 
I was not expecting to hear that news from him and I so want to continue on w/ my plans to have a baby. This surgery can have major complications...including sterility...so I am so torn right now. He gave me another really renowned doctor at the Univ of Miami so I will call tomorrow to make an appt for a 2nd opinion. 
 
I just don't know what to do. How can I get a major surgery when I feel SO great...so great that I want to get pregnant. And when I was pregnant w/ my now 2 yr old son...I never felt better!!! I did the same thing....went off the meds 3 mths prior to TTC and I got preg the first month ( thk gd)....and the whole time I was pg i felt like I never had CD. It was incredible!!! So that is why I chose to go off my meds now and hope to mirror the experience w/ my first preg. But obv if there is any cancer in my body pregnancy would be a horrible situation!!! But I had the stricture w/ my first preg and nothing has changed since. WHAT TO DO!
 
I just feel that this surgery will open up a can of worms in my colon and more things will happen....uhhhhhhhhhh!!! Any advice would be MUCH appreciated!!!ere is my story..
 
 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/14/2008 2:31 PM (GMT -7)   
Hi Wow you must have been quite surprised by your GI's suggestion of surgery.Did he sat as to why the inflamation is still there and why your not having any symnptoms? What meds would you take when and if you get preg.? Not able to give advice here as every situation is unique. Just wanted to lend a comforting arm. lol gail

Krica
Regular Member


Date Joined Apr 2007
Total Posts : 99
   Posted 6/16/2008 2:56 AM (GMT -7)   
hi, i have stricturing crohn's in my transverse colon, i did a sigmoidoscopy and showed mild inflamation. The scope could not pass in the stricture. I am doing very well, my weight is stable as never before, no pain and going to the toilet two or three times a day. My doctor said is not necessary surgery, despite a very narrow stricture. I have been spoken to my homeopathic doctor, he said that many people can have normal lifes with strictures, of course if there is a mild or no inflamation at all. I also have a smooth stricture in the sigmoid colon, which  it is not necessary therapy.
 
I am on 150mg azathioprine, folic acid, vitamin c, zinc, fish oil, probiotic, arsenicum album (homeopathic remedy).
 
I have  been discussed with my doctors about surgery, the problem is when you go for it is very likely the disease returned to the same place. Surgery is the last resource when others treatments fail. My doctor said, in case of my healthy start deteriorated, he will try Remicade, surgery will be the last option. I did a surgery in 2001, a resection in my termminal
ileum, the disease have returned, but i have been controling very well.
 
I do not know if it is the bunch of vitamins that i am taking or the homeopathic treatment¨, but my condition really improved.
 
I had a chat other day with one of my doctors about pregnancy.In my case is advisable to stay in azathioprine, because the risk of a flare up.
 
I wish you good lucky!!! All the best.
 
 
 

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/16/2008 6:15 AM (GMT -7)   
"working out, working, and being a full time mother" ,, isn't that taking up most if not all your time? Preparing for when your condition acts up does not include having another child.

Mackiesmama
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 6/16/2008 5:43 PM (GMT -7)   

Thanks for your replies!

 

I went for my 2nd opinion today at UM and I am very happy with everything she said. There wasn't too much talk of surgery. It was more on meds. She suggested that I go on Remicade ( never been on it b4 ) see how I react to it, try to conceive and then stay on it throughout my pregnancy. I decided to not go on anything right now. Try to get pregnant only on asacol and hopefully remain in remission like I did with my first pregnancy! Then after we have a baby, go for the remicade. If by any chance I do flare during the pregnancy I can always try remicade or use prednisone ( which I never want to EVER). So, i am happy we made a plan! I will get a repeat colonoscopy after the baby is born or in a yr...whichever happens faster ( hopefully the baby :) ) and go from there. Since I have NO symptoms, I think that this is the best option for me right now.

 

Wish me luck!!!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/16/2008 5:58 PM (GMT -7)   
Good Luck keep in touch .lol gail
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