Help I'm not sure whats wrong now--stricture **UPDATED**

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Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/17/2009 11:21 AM (GMT -7)   
Hi Everyone, I haven't been on in some time cause I was doing ok but now I'm not feeling good again. I'll try to make this as short as I can. I have cd for 21 years now. The meds I'm on are: Humira every other week, Asacol 6 a day, 6mp 50mg, Entocort 3 a day, fluoxetine, antenonol, prilosec, and painkillers ( either hydrocodone, tylenol 3 w/ codeine, or now loratab, or ultram). The painkillers it depends on what I'm doing as to which one I take cause the stronger ones I can't function on.
Well about 3 weeks ago I went to the er cause I had this horrible pain that I never had before. It started in the middle of my back and then went around to the front of my stomach under my ribs then it went down the left side of my stomach( i have 3 fistulas on that side). It felt very tight and constricting. I got scared and thought maybe could be gall bladder but they did a ct and chalked it up to intestinal spasm. the er gave me morphine which helped. I went to my dr and that is when he added the entocort. I have been in contact with them and go back this Thursday. I just feel like I am on so many pills a day with no relief. Now I'm missing work again. Today the pain is right under my ribs at the top of my stomach and feels real swollen. could this be the start of a stricture? I have never had one before. I had a partial intenstinal blockage about 5 years ago and that is when they found the fistulas. The pain I am feeling is like when i had the blockage after I ate, it took a while for the food to travel after I ate. Thats how it feels all the time now plus the pain goes down the left side.
 
I'm asking everyone on here for an opinion. Does this sound like I'm heading for another blockage? I have only been going to the bathroom(bm) about once a day and of course its diarhrea. My fistulas by pass a good portion of my colon so I really don't ever have formed stools.
Thanks everyone!!


Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**

Post Edited (Susie-CD) : 2/20/2009 7:38:15 AM (GMT-7)


Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/17/2009 4:22 PM (GMT -7)   
Help does anyone have an opinion??

Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**


Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/17/2009 6:34 PM (GMT -7)   
No temperature and yes I am passing gas. I know I'm not blocked yet. It kinda feels like someone is standing on my stomach. If that explains the pressure.
 
Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/17/2009 6:44 PM (GMT -7)   
Hello Sue,

Did your doctor give you any anti-spasm meds?? I am wondering if it could be gas. Have you been taking anything different in the last 3 weeks? Or change anything like taking fiber or colase?? I used to get intense pain every once in a while that moved around like you have described. I couldn't pin it to anything but finally realized it happened only when I took colase. I hope you find the answer -- and I hope its not a blockage!
Diagnosed with rectal 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.


Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/17/2009 7:42 PM (GMT -7)   
thanks for answering. I don't think its gas cause my stomach isn't rumbling like it usually does with gas. I haven't been using colase or anything else. The only thing that has been added is the entocort. I had taken that last year and didn't have any reaction to it. I just don't know. I guess I'll see what the dr. says on thurs. confused
Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/17/2009 10:03 PM (GMT -7)   
hi there...i was terrified i had a stricture as well. actually just got out of the ER...i have been in the worst pain in my 20 yrs with Crohn's...the CT scan showed no blockages etc. but they gave me bentyl? an anti-spasmatic...i just took the 1st one so we'll see what it does. Have you tried anything like this?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/18/2009 4:31 AM (GMT -7)   
Hi Susie Not sure but I did have back pain before around the time of my blockages about mid back. Perhaps wait it out and see how it goes. Are your fistula's in the same area? Do they drain outside your body? I suppose the scan could tell if you had a abscess.. Sometimes figuring out what is going on can be hard on us that's for sure. Keep in touch and let us know how your doing. Hope the meds help.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/18/2009 7:21 AM (GMT -7)   
Ya i take Levsin when needed for spasms but this isn't like a spasm. No my fistulas arent' feeding outside my body they are inside. The blood work showed ok too. I'll keep ya posted. I go to the dr tomorrow. Thanks for caring.

Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**


Susie-CD
Regular Member


Date Joined Jan 2005
Total Posts : 58
   Posted 2/20/2009 7:37 AM (GMT -7)   

Well i went to the dr. yesterday and left in tears.  He is the second dr. I've seen since moving to the Charlotte area. The first one didn't really help getting me on Humira or Remicade. This dr. has a great remi nurse who also has Crohn's so she is sympathatic to me and my situation. She is great and got me on Humira. Well the dr. decided I should have a small bowel to see exactly what is going on. He wants to see my intestines. He then said I will have a colonoscopy. He said that last one had poor prep. Well my last 4 had poor prep. Its because of the fistulas I have in my colon. I do what they say to do and I still don't get fully cleaned out. Not my fault! mad I told him that and he said I will do a two day prep and be on a liquid diet. I said well will you put me in the hospital for the test then. He said no they won't allow it. I know I will be incredibly weak with all of that. Idon't know how I will last. I kind expect what the dr. will say going into the appointment but then when I actually hear it I get upset. Does anyone else get like that? Sometimes I feel like such a big baby. sad After the tests are done we will go to a specialist in Winston-Salem to decide whether I will need surgery. He wants an ibd surgeon to give a second opinion.

What really got me yesterday was that I then asked him for a sick note for work and he said I can't give you that because I don't know for sure its the Crohn's. I got mad and I was like what??!! I said I have had this for twenty years I know what it is. He said well the ct and blood work all came back normal. I was so angry!! He's sending me for tests and called in more painkillers but doesn't think its the crohns?? I had to keep my cool but that is what sent me over and I started to cry. I did get the note cause I told him i can't go back to work without it. I said I work for the state and if you are out more than 3 days you need a dr. note to return to work. I asked him about short term disability and he said I don't do anything like that I need to go to a disability dr. I just put a call into his remi nurse Becky to help me out.

I was just going to say can you believe this but I know alot of you have been through this so its a silly statement to say. I believe he's a good dr but his bed side manner sucks!! Becky is also the one who got me Humira and I don't pay anything for it. I hate to leave the office and switch dr's. Opinions please would you change drs??


Take care and feel good,
              Sue
 
Diagnosed in 1988 with CD, with 1 surgery, many fistulas and 1 blockage. 
**If God Brought You To It He Will Bring You Through It**


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 2/20/2009 12:59 PM (GMT -7)   
when are your test scheduled? Did you have your files transferred to his office? If so, he SHOULD know that your diagnosis is Crohn's! He could at least give you a note that you are being treated for an undetermined illness and will be undergoing tests to determine what it is, or that you were in his office for a medical issue...would that be enough for your work?

I would definitely find a doc who is willing to work with you a little better...I don't know much about the Charlotte area, but is there a teaching hospital in the area? It is so important to have a doc you can get answers from...not get more upset when you go to him...Good luck and keep up posted.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/21/2009 2:28 PM (GMT -7)   
Hi Sue Did the Dr. say if you need to take the prep. for two days or just the liquids for two days? I agree though he could have given you a paper stating you were there . So does he put you asleep for the scope? I know it is hard on a person but hopefully you will get threw this OK. I do however think it is good he wants a second opinion and that your bloodwork and CT are normal although I cain't figure out how with all your fistula's he thinks it's normal . Hope your feeling better today though.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

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