Been a While and a Question (or two)

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princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/2/2010 4:48 PM (GMT -7)   
Hi All,

I know I have been out of action for a while.

Just gotten back for my first visit to a gastro specialist. I am now on 6MP, along with a tonne of other stuff!

Also had my first colonscopy for quite a while. It didn't find any traces of active disease, and apparently the site of my resection has healed well.

To me this makes little sense: I have had fairly constant D for the past year, along with high levels of tiredness, joint pain, reflux and nausea. I thought (and still do) I was flaring. I feel at a complete loss: I am absolutely devastated. I know I am ill: I don't need any tests to tell me that. But I do want to know why. I didn't get any answers at all. They just sent me home.

My question to you all is simply if this has happened to you. And if so, what was the end result?

Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/2/2010 5:57 PM (GMT -7)   
Hi PJ,
I'm relatively new to this forum, but old to CD.

It sure sound's like you've been through a lot, my thinking is, that perhaps the CD is higher up than the scope. Have you had a CAT scan, small bowel follow through via CT might show the CD in other areas.

Have you taken 6MP before, or is this a new drug? I can't say much about this one, but other's can, I'm sure.

I do know that it's not uncommon for CD to come back, most often at the exact spot they cut it out, but, hey, not always.

You know if your flaring, so the trick is to have the doc's figure out where it is.

I hope the drugs help calm things for you, in the mean time, hang in there, eat gently and be gently... :)
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/3/2010 7:00 AM (GMT -7)   
Not sure how long you have been on the 6mp, but wanted you to know that it can take about 4 mos to reach full efficacy. I agree that maybe you might want to request a pill cam. That test shows areas where scopes cannot reach. Good luck and I hope you get feeling better soon.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 5/3/2010 8:54 AM (GMT -7)   
I second what Nanners says...get a pill cam.  With CD, it can occur anywhere from mouth to anus.  You might be healed in the large intestines but you might have some activity elsewhere like the small intestines.  Talk to your dr. about it.   Sounds like there is something going on that hasn't been seen yet.

tallpianoguy
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/3/2010 8:58 PM (GMT -7)   
If your GI suspects more CD activity he can request a small bowel series with the barium - I've had them two or three times, and if the radiologist is thorough with your exam, they can see just about everything from the esophagus on down.... I never had a pill cam though, since I have had a significant stricture for the duration of my disease (about 15 years now). Good luck!

princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 5/5/2010 5:08 AM (GMT -7)   
Hi All,

Firstly, just started the 6MP in the past week...so fingers crossed it does help.

They did do a contrast scan, but I haven't got the results as of yet.

I guess I just feel frustrated. During my hospitalisation, I wasn't exactly flaring (as badly) because of the dietary restrictions (ie clear fluids) they had me on. Ironically I had been flaring horribly the week before (to the extent I could barely walk). It didn't help that I was in a out of town hospital (I don't live in a city with a GI, so I have to travel to see one), and that it was my first visit to this particular hospital/specialist. To me it felt like I just wasn't believed. When you have been having virtually uncontrollable D on and off for weeks (in my case, months), being treated like that is frustrating!

Thank you for all your comments: it has been one hell of a week!

Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/5/2010 6:53 AM (GMT -7)   
Jo,
I absolutely agree, and I totally do not get it. These are supposed to be specialists, and yet, even from them a lack compassion and understanding can be too easily experienced.

It's been bugging me for years, and I still experience it.

Hopefully the 6MP will do the trick.

Hang in there,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

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