J-Pouch and pain in back????

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Marybeth
Regular Member


Date Joined Sep 2004
Total Posts : 29
   Posted 9/3/2008 2:33 PM (GMT -6)   
Hi,

I have had CD for 30 years. I ended up with an illiostomy, but it was reversed because it retracted. The surgeon then created a J-pouch four years ago. It is doing Ok, but this summer I have been having EXTREME pain in my back on the right side and now in my pelvis also on the right side, which comes and goes - worse at night when the pouch is full. Sometimes it radiates down my leg. I thought it was sciatica, but now I don't think so. Has ANYONE experienced this or knows any information? I would be very, very grateful . . .

Thanks,

Marybeth

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3064
   Posted 9/3/2008 3:16 PM (GMT -6)   

Marybeth--sorry to hear you are having such pain...Have you contacted your doc?  I know that people with CD aren't usually candidates for a J-pouch because of the nature of our disease.  Maybe there is something going on that needs to be addressed.  The only time I have had some similar problems was when I had an abscess on my right side.

Don't live with the pain too long...Let us know how things go.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5395
   Posted 9/3/2008 8:35 PM (GMT -6)   

Marybeth,

You might want to post your question at www.jpouch.org  There are over 6000 jpouchers on that site that might have an idea for you.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


jonathanjay
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/5/2008 12:48 AM (GMT -6)   
Marybeth,
 
Let me tell you how I just got to your post and some of my thoughts...
1. I got out of bed about 5 minutes ago to take two vicodin
2. I hate the thought of having to take drugs all the time
3. I woke up this morning and wanted to scream/punch a hole in the wall from the pain in my back
4. My back and stomach are KILLING me as they always do
5. I have a J Pouch
6. I am 26 and am not happy about the thought of living the rest of my life with this, especially since it seems as I get older I have more pain.  What's it going to be like when I'm 35? 50? 75?  Will I live to 75? 60?
7. I searched "j pouch forum" and came across your post...I just joined so I can reply.
 
So, please let me know if you come up with anything from your doctor.  I have pretty much given up on doctors.  Let's start an email post and keep each other up to date on what we find...
 

salimshady
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/2/2009 2:09 AM (GMT -6)   
Hi Marybeth,
I just read your comment and actually I can post pretty much everything jonathanjay just said

Let me tell you how I just got to your post and some of my thoughts...
1. I got out of bed about 5 minutes ago to take two vicodin
2. I hate the thought of having to take drugs all the time
3. I woke up this morning and wanted to scream/punch a hole in the wall from the pain in my back
4. My back and stomach are KILLING me as they always do
5. I have a J Pouch
6. I am 26 and am not happy about the thought of living the rest of my life with this, especially since it seems as I get older I have more pain. What's it going to be like when I'm 35? 50? 75? Will I live to 75? 60?
7. I searched "j pouch forum" and came across your post...I just joined so I can reply.

And many many more.

I would like to connect with both of you hopefully through email so we could swap stories. Its nice to know that I'm not the only one suffering through with a j-pocuh.

Rivulet
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/25/2009 12:33 PM (GMT -6)   
I've had my j-pouch for 19 years. about 7 years ago I developed pain in my pelvic area and lower back that sometimes radiates down my leg similar to sciatica. I've been through every test and treatment you can possibly think of and still now answers. The latest my GI doc said was that there is likely nerve damage from the surgery but there's no way to tell for sure and there's no clear treatment other than pain meds. I'm still looking for an answer but the hunt is rather frustrating. If anyone comes up with any ideas I'd be interested in hearing about them!

marisa.pandas
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/29/2014 2:03 AM (GMT -6)   
Hi!!

I am in my late teens and have had a j-pouch since I was 10. about 3 years ago I started getting low back pain out of the blue and am still suffering. I am constantly spasming and trying to get better through physical therapy, all while basically living off of advil and hydrocodone. I am a college student and just want to live a normal life! I saw the posts from several years ago and was wondering if anybody has had any success? Please, any info will help! Thank you!!

PoucherInTO
Regular Member


Date Joined Feb 2014
Total Posts : 155
   Posted 3/29/2014 9:22 AM (GMT -6)   
Hi, I'm sorry to hear about your spasms and pain - definitely not fun.

I'm wondering what, besides the meds, have you done to get to the bottom of the source of your pain. Have you seen only your family doctor? I would also suggest seeing your surgeon (if you haven't already) if possible, and also, sometimes low back pain is related to gynecological issues (shoot, are you female or male?)....

You mention you are a college student, has anything else changed? Are you carrying heavy text books? Have you had any car accidents or injury? Are you feeling more stress now that you are in college?

How is your jpouch behaving? Any abnormal cramping, pouchitis, etc?

I'm sorry to answer your questions with a bunch of questions but there are so many reasons your lower back could be doing this, just trying to find out more information :)

marisa.pandas
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/29/2014 1:09 PM (GMT -6)   
I have seen three different physical therapists now and am currently seeing the third one. We are working on strengthening my core muscles to help stabilize everything. Apparently I am overly flexible and move too much, so we're working on getting my muscles stronger so everything stays in place. I'm still having a lot of pain though, so I don't know if we're targeting the right thing. It may just be taking a while too, I'm not sure...

I'm a girl! I probably should have mentioned that before haha. I carry heavy textbooks occasionally but I have talked to some of my professors and they don't make me bring them. Nothing has really changed since college started. I can hardly walk much of the time so I don't have much of a social life- no partying or anything like that.

My j-pouch is functioning beautifully and I have no problems in that area!

PoucherInTO
Regular Member


Date Joined Feb 2014
Total Posts : 155
   Posted 3/29/2014 1:45 PM (GMT -6)   
Well it definitely sounds like you are doing a lot of things right! Physio, going easy with those heavy textbooks, etc.

Are you keeping up with your calcium intake? IBDers are at risk for osteopenia and osteoporosis, so keep that in the back of your mind as well. I, like you, was young when I got my jpouch (colitis) and just had my first bone density scan to make sure everything is ok. Have you had one? It might be a good idea to talk to your doctor about it and keep it as part of your overall health plan.

Best of luck!
Diagnosed with UC in 1990 at age of 10
Proctocolectomy with temp ileo and jpouch creation 1995
Ileo take down 1996
JPouch removed, butt closed and perm ileo 2013
Happy and healthy future!

marisa.pandas
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/30/2014 3:58 PM (GMT -6)   
I have never considered calcium and haven't had a bone density scan. I will definitely keep that in the back of my mind! Thanks so much for your help!
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