New here, and I need to blow off steam!

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britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 6:06 AM (GMT -7)   
I am a 24 year old who's been living w/Crohn's since 1994.  My disease has been managable until my third trimester of pregnancy over 2 years ago.  I started experiencing intense abdominal pains and ended up having a resection about a month and a half after giving birth.  I had 4 fistulas and an abscess, resulting in an ileocecotomy.  This was May 2007, and I have not been "myself" since.  I lost a lot of weight, and have not been able to get back to my pre-surgery, pre-pregnancy weight. I am 5'7" and about 112 lbs., but my ideal "normal" weight is about 122 lbs.  I may gain a couple of pounds and then have a bad day with a lot of restroom-runs, and lose those couple of pounds.  I have been through just about every type of medications there are out there with the exception of clinical studies. 
 
There are many things medical doc's fail to explain to patients (they just don't spend the time to really know you and inform you).  I found a great doc, but he doesn't listen like he should.  I've been on Humira since November 2008, with no real change in my symptoms.  First of all, I started seeing an herbalist/PA who started me on a diet similar to the SCD diet along w/various herbs/supplements, and it's been somewhat helpful. Well, he informed me that since I had my ileum and part of my secum removed, that I no longer have an ileocecal valve (I didn't even know what that was!) and that this valve plays a very important part of the function of your bowels.  So, although my GI just assumes I'm in a flare when I'm not doing 100%, I attribute it to this problem, or the possibility of having IBS AND Crohn's... anyone have these issues?  Also, I have extreme low back pain and muscle and joint pain in my legs.  My symptoms always get worse when I'm on my period... ugh, like it's not bad enough!  And I have been dealing w/anxiety & depression since the surgery almost 2 yrs ago.  I started Zoloft approx. 2 months ago, and felt much better (another link to IBS) but a few weeks later, started becoming more depressed.  I guess I need to adjust my dosage.  My husband and I would like to have another child, but I cannot seem to get my symptoms in check and gain some weight, so I don't even know if it's possible.  This makes me feel hopeless, thus increasing my depression symptoms. :(  It's wierd, because I will have one day where I feel really good, and I don't go to the RR once, then the next day I may go once or twice, then the next I go like 4-5 times!! This seems very different than a "flare".  That's why I'm wondering about IBS, etc.
 
I would appreciate any and all advice or words of encouragement. Thanks, and I'm glad to have found this outlet!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2009 6:27 AM (GMT -7)   
Hey britt and welcome to Healingwell. Sorry you are having to join our club though:) Many of us suffer with some IBS along with our Crohns. I also developed anxiety related to my Crohns after having the disease for over 30 years.

What really helped me was to figure out what foods bothered me and which ones didn't and avoiding the ones that gave me problems. I now live on a modified low residue diet, and it works great for me. Also, once I figured out that I was suffering with anxiety and dealt with it thru therapy and the occasional Xanax, I have been able to stop the anxiety in its tracks. I don't have that many bad days anymore. I can remember times that I would be down for 3-5 days at least 4-5 times a year. But because of the changes I made, I no longer have them.

Hope I was able to help a little.

Hugs
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"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/8/2009 7:38 AM (GMT -7)   
It's my understanding that your body should be able to adjust to not having an ileocecal valve so I'm not sure it's relevant to your situation, maybe someone else can comment on that though.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.
 
Go Saskatchewan Roughriders!


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/8/2009 9:12 AM (GMT -7)   
One of the reasons we have avoided surgery is because loss of the ileocecal valve can cause diarrhea.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 4/8/2009 9:13 AM (GMT -7)   
Britt -- I had surgery almost 27 years ago that removed my ileoceacal valve. When I'm not flaring, I have mostly normal BM and bowel function. But I do think some people do have issues when it's removed. And even though I'm 48 yr old grandma I can sympathize when you on the period issues.........I can't wait for menopause! I get a "mini flare" every month.
If you think your doc isn't listening try making a list of subjects or questions for your next visit. I find if I do that, my GI is much more likely to give me more informed answers (weird).

good luck and vent any time!!
 


britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 9:32 AM (GMT -7)   
Thanks so much everyone! lamb61- I have definitely made a list! It seems to get longer everyday, as I am continuing my research about CD. I have an appt. next week, so I am prepared to ask a lot of questions. Thanks again!
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/8/2009 11:41 AM (GMT -7)   
I'd talk to your psychiatrist and therapist about adjusting the dosage on your Zoloft, first... (I'm sure ya already knew that, though)... Depression can be hard... especially when you're in pain a lot...

I hope things get figured out, and you feel better soon...

I'd also like to say that you should probably concentrate on taking care of the kid you have right now... I mean, you're not feeling well... and it's hard to take care of kids as it is... And with how you're feeling, you probably shouldn't try to get pregnant... Maybe wait a few years or somethin'... Kay?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/10/2009 12:51 PM (GMT -7)   
britt1449 said...
I am a 24 year old who's been living w/Crohn's since 1994.  My disease has been managable until my third trimester of pregnancy over 2 years ago.  I started experiencing intense abdominal pains and ended up having a resection about a month and a half after giving birth.  I had 4 fistulas and an abscess, resulting in an ileocecotomy.  This was May 2007, and I have not been "myself" since.  I lost a lot of weight, and have not been able to get back to my pre-surgery, pre-pregnancy weight. I am 5'7" and about 112 lbs., but my ideal "normal" weight is about 122 lbs.  I may gain a couple of pounds and then have a bad day with a lot of restroom-runs, and lose those couple of pounds.  I have been through just about every type of medications there are out there with the exception of clinical studies. 
 
There are many things medical doc's fail to explain to patients (they just don't spend the time to really know you and inform you).  I found a great doc, but he doesn't listen like he should.  I've been on Humira since November 2008, with no real change in my symptoms.  First of all, I started seeing an herbalist/PA who started me on a diet similar to the SCD diet along w/various herbs/supplements, and it's been somewhat helpful. Well, he informed me that since I had my ileum and part of my secum removed, that I no longer have an ileocecal valve (I didn't even know what that was!) and that this valve plays a very important part of the function of your bowels.  So, although my GI just assumes I'm in a flare when I'm not doing 100%, I attribute it to this problem, or the possibility of having IBS AND Crohn's... anyone have these issues?  Also, I have extreme low back pain and muscle and joint pain in my legs.  My symptoms always get worse when I'm on my period... ugh, like it's not bad enough!  And I have been dealing w/anxiety & depression since the surgery almost 2 yrs ago.  I started Zoloft approx. 2 months ago, and felt much better (another link to IBS) but a few weeks later, started becoming more depressed.  I guess I need to adjust my dosage.  My husband and I would like to have another child, but I cannot seem to get my symptoms in check and gain some weight, so I don't even know if it's possible.  This makes me feel hopeless, thus increasing my depression symptoms. :(  It's wierd, because I will have one day where I feel really good, and I don't go to the RR once, then the next day I may go once or twice, then the next I go like 4-5 times!! This seems very different than a "flare".  That's why I'm wondering about IBS, etc.
 
I would appreciate any and all advice or words of encouragement. Thanks, and I'm glad to have found this outlet!
tongue Hey Britt your having a hard time but you have been blessed with 1 child and thats great i dont know alot about IBS i have crohns disease for 17 years now and been tring to have babies since the past 12 years and still tring ,tring wont kill us will it but no luck i guess my body just isnt well enough to have babies and i am fine with that i have 2 step kids but its never the same as your own.I am on Humira now for my disease and not having alot of luck but i am hopefull someday something will turn around.By the way i go like that to sometimes i run to the bathroom non stop some days are better than others maybe your having an of day see what your doctor thinks or is he useless like mine.Good Luck Britt Your Bowel Buddy Jenn yeah

i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/10/2009 2:30 PM (GMT -7)   
idea Might be an idea to send that list of questions to your doc in advance of your next appointment...of course he may just refer you to a forum like this one, but at least it means you get a better chance of well-thought-out answers that join the dots. wink Just an idea....

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/10/2009 3:07 PM (GMT -7)   
Welcome to the forum this is the best place ever :)

I think depression is something a lot of us are going through these days :(
I have been feeling really blue myself I am usually a very happy person.

I am also 24 and waiting for my crohn's to go to "sleep" so i can have my first baby, and having to wait for something that you have no idea on how long you have to wait for is really hard. I also have endometriosis. But i try just to make the most of the time i have while i am still "free" hehe..
We are both young so we have good time i hope.


Hope you feel better soon.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 4/10/2009 3:14 PM (GMT -7)   
britt1449 said...
Also, I have extreme low back pain and muscle and joint pain in my legs. My symptoms always get worse when I'm on my period... ugh, like it's not bad enough!


The muscle and joint pain could be just a CD symptom, BUT it could also be Humira... :(

Have you ever tried taking vitamins or Ensure? Or B12 shots? You can read about B12 here: http://www.dietandfitnesstoday.com/vitaminB12.php If you find you have any of the problems on the list B12 is your friend :) Since it is actually needed for calcium absorption, I definitely think it could help with your joint pain. I don't know though how much it is going to help you if it's Humira...

Low back pain is never a good sign and it's probably the end of your colon that's bugging you.

I'm really sorry you're going through this :(
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/10/2009 4:11 PM (GMT -7)   
snohare said...
yeah Great answer snohare taken alist to the doctors is a great idea and half of us think it but never remember to so thank you i will begin my long list i hope i have enough paper or dont run out of ink. smhair
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion

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