Just need to vent!!

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fongers06
Regular Member


Date Joined Jul 2008
Total Posts : 82
   Posted 9/3/2009 11:45 AM (GMT -7)   
Here is my history - diagnosed in May 08.  Hospitalized in Aug 08 and Sept 08.  Had surgery in Nov 08 and had 18 inches of small intestine removed.  Switched doctors and from Nov to April was not on any meds.  I am currently on Pentasa, Endocort, Vitamin B12 shots, calcium, Vitamin D and waiting for my prior authorization for Humira to go through to start that up again. 
 
Does anyone else just get tired of it all?  Since my surgery I have not had the unbearable pain that I had but I just feel like nothing else is much better.  I still have crampy pains, most days my whole body aches all over, have the D just about every day and the bloating is horrible.  I can't seem to lose weight for anything and although some have the opposite problem - this is a big issues with me mentally.  I have in the past been diagnosed with eating disorders and the way my body is looking these days is got me very depressed.  I don't know what my point is in typing this.  I know there is nothing that anyone can do to help.  Just felt like here at least everyone understands.  Thanks for listening.
 

Diagnosed with Crohns in May 08
Resection in November 08
Currently on no meds - waiting to see new doctor
Married, mother of 4


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 9/3/2009 12:06 PM (GMT -7)   

Hi Fongers,

Sounds like your having a flare, OR maybe some foods you're eating could be bothering you.  Are there certain foods that tend to give you problems which you then avoid?  Maybe your body is not tolerating the Pentasa.  All this may sound pretty basic, but I'm just throwing some ideas out there that you might want to explore.

Good luck, and I hope you find out what's going on.  Does your doctor have any input on your symptoms?

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


fongers06
Regular Member


Date Joined Jul 2008
Total Posts : 82
   Posted 9/3/2009 12:12 PM (GMT -7)   
I didn't know that you could have a problem tolerating Pentasa.  I guess I just assumed it was a milder medication.  I have tried for so long to find a connection between foods and how I feel and I can't find anything.  Just at that point where you feel like you can't win.  My doctor is hoping the Humira will help me start feeling better.
 
Diagnosed with Crohns in May 08
Resection in November 08
Currently on no meds - waiting to see new doctor
Married, mother of 4


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2009 1:01 PM (GMT -7)   
First off it can take a full year to fully recover from surgery. Also it takes time for the body to adjust to all the changes. After my resections, it took me along time to understand all the changes my body went thru, and make the dietary changes I needed. Those who have had resections are also prone to small intestine bacterial overgrowth (SIBO) which symptoms can mimic in many ways a Crohns flare. I was just treated for this recently. I took a 10 day course of Cipro and changed to a better probiotic, and I feel so much better now. I would talk to your doctor about how you are feeling, maybe they can change things up and get you feeling better too.

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"*

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 9/3/2009 1:27 PM (GMT -7)   

Fongers,

Yes, a person can have problems tolerating Pentasa---I'm one of them.  (You can see by my signature at the bottom that Humira is the ONLY Crohn's medication that I can tolerate.)  My adverse reactions to the Pentasa included flu-like symptoms, along with SEVERE intestinal spams. (To make sure my symptoms weren't just a coincidance, I did 2 trials of Pentasa about 1 month apart.  My GI doc concluded, as I did, that I can't take Pentasa.)

Your symptoms, however, could be caused by other things.  Just letting you know my reaction to Pentasa.

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 9/3/2009 1:35 PM (GMT -7)   

Nanners,

Your comments about the length of time it takes to recover from surgery are enlightening!  I had no idea it could take that long!  With that knowledge, maybe it will help all of us who have surgery to be patient with the healing process.

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs.   My first small bowel surgery was on 7-30-09.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  

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