Re: Back problems relating to Ulcerative Colitis/pouchitis?

[Guest guest]

jarad_patko wrote:

>

> I have two herniated discs in my low back and was wondering if anyone

> else has back problems? If so, has anyone lost bone density due to

> steroids or malabsorbtion?

I have considerable back pain -- spinal stenosis (L3-L4, L4-L5, and

L5-S1) with considerable arthritis and degeneration through the lower

spine. For over 2 years I have had to use a walker. Fortunately, with

the recent development of the Xifaxen improving the Crohn's so that I

can eat a balanced diet, my strength level has improved and I am

managing to do without the walker, but I do have to be very careful not

to set off those horrible back spasms.

Even though I was on prednisone for 5 years, I was overjoyed recently to

discover that my bone density is actually better than it was 10 years

ago.

I couldn't really speak to the rest of your questions except to say that

prior to the Xifaxen, gas pains would often cause extraordinary pain.

Since the xifaxen, I've not had that happen a single time (whereas

previously it occurred at least 3-4 times a week). I will say my back

pain is not as severe as it was prior to Xifaxen. Whether or not

there's a direct connection, I can't say yet. Time will tell!

Regards,

Carolyn B. in SC

[Guest guest]

Jarad,

I suspect your back problems are from the steriods taken for the UC. I have also been on prednisone, and in fact am taking 40 mg/day now due to autoimmune hepatitis. I also take 1000 mg calcium per day. I've had some back problems and neck and shoulder problems, and perhaps it's from the corticosteroids.So sorry to hear about all that you've been through. I also have a j-pouch which I received in 10/2005 & 1/2006. I had a colectomy in 7/2000 which is when I found out that my liver wasn't healthy. I've suspected PSC since then but didn't really get a clear diagnosis until the liver biopsy done last November. The reason is that the ERCP was negative in 2002 for PSC, meaning I've had small-duct PSC. I was supposed to have an ERCP done today, but since all the liver values are back to normal now, the doctor cancelled the ERCP test.

I'm finally doing somewhat better with the j-pouch, although yesterday I had a lot of trouble with it. In the morning I felt I needed to go about every 15 minutes! It was almost constant. But today it's calmed down. Maybe it was something I ate. I don't get back pains when I need to have a bowel movement, that I recall. But I often have trouble emptying the pouch - I have to sit on the toilet for a while before it empties.

All the exercising you do should be helpful for the PSC. I need to do a lot more. I went to a UCLA liver seminar on Saturday and exercise was definitely mentioned repeatedly as being very important in taking care of the liver.- Marie

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[Guest guest]

Hi Jarad;

Have your doctors ruled out sacroiliitis:

http://www.mayoclinic.com/health/sacroiliitis/DS00726

The reason I ask is that the above article notes that it is very

difficult to distinguish sacroiliitis from herniated disks.

Sacroiliitis is known to be a common extraintestinal manifestation of

inflammatory bowel disease .... many IBD patients may have it but are

asymptomatic, see for e.g.:

Clin Imaging. 1995 Oct-Dec;19(4):258-62.

Asymptomatic sacroiliitis in inflammatory bowel disease. Assessment

by computed tomography.

McEniff N, Eustace S, McCarthy C, O'Malley M, O'Morain CA, Hamilton S

Department of Radiological Sciences, Deaconess Hospital, Harvard

Medical School, Boston, Massachusetts 02215, USA.

Plain film radiographs and computed tomography scans of sacroiliac

joints in 65 asymptomatic patients with known inflammatory bowel

disease were performed and evaluated by two radiologists. Computed

tomography revealed the presence of asymptomatic sacroiliitis in 21

(32%) of the 65 patients (New York grades 2 to 4); asymptomatic

sacroiliitis was identified by plain film radiography in only 10

(18%) of 57 patients (p < 0.001). No correlation was observed between

the presence or absence of sacroiliitis, and the age and sex of

patients, disease type, or duration of disease. The prevalence and

diagnostic value of computed tomography in the detection of

asymptomatic sacroiliitis in patients with inflammatory bowel disease

are discussed. PMID: 8564870.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Thanks everyone for your info.

: I had an xray to check for ankylosing spondylitis, but

never did hear of the sacroileitus, but I printed that stuff so I can

ask my doctor about it.

I also forgot to mention that I have a lot of food allergies (tree

pollen, soy, peanuts, tree nuts, gluten/wheat) and I've noticed a few

things:

One: When I eat stuff I'm allergic to by accident, I notice my back

pain increases tremendously and very quickly.

Two: When I've taken benadryl to relieve an allergic reaction, it

significantly reduces inflammation and my back feels much better.

Three: Even if I don't eat anything I know I'm allergic to, and I

take benadryl, my back significantly improves over the next few days.

I usually take 4-8 benadryl to get a quick reduction in inflammation.

The last allergist I saw didn't think I even had allergies, he blamed

everything on my liver, but then I saw the G.I. and he said my liver

was doing great. So I don't really know if anyone knows for sure what

the heck is going on. I can say I crave a lot of processed foods,

probably because I got addicted to that which I am allergic to. Once

I found out about the food allergies and changed my diet (it has been

really hard to stay on track with that) I have noticed a significant

improvement in everything when I'm eating strictly home-made soup and

salads. Then I get bored and eat stuff thats not too great and its

back to square one.

Peace,

Jarad

>

> Hi,

> I have two herniated discs in my low back and was wondering if

anyone

> else has back problems? If so, has anyone lost bone density due to

> steroids or malabsorbtion? Also, does anyone notice when you eat,

> once the food goes down to the lower G.I. area (in my case j-pouch)

> that there is increased pressure and then you get back pain

> indirectly? Also, does anyone get " phantom " pain from their

(removed)

> large intestine? Finally, is there anyone out there who thinks

their

> back problem could have been the root of their Ulcerative Colitis?

>

> Here's the full story regarding my health issues/back:

>

> 1996: Broken wrists, mountain biking, external fixators

> 1996: Dx PSC via upper G.I. (ERCP). Treated with Actigall

> 1999: Dx UC, treated with high doses of steroids: 60mg for 1.5-2

> years, 6mp for 2 months, Asacol for 3 years

>

> October 2002/3: Fourth Colonoscopy (to check on UC),

Macroperforation

> during test, Immediate Emergency Abdominal surgery (total

colectomy,

> j-pouch surgeries, 3 steps)- woke up from first surgery and had

> extreme sciatic pain in right leg. **Pain persisted in right leg

for

> several years.

>

> June 2005: I was doing a lot of hiking over the summer (5-10 miles

> per week). My right leg was still hurting at the time, then I moved

> the wrong way and my back went into spasms. Severe debilitating

pain

> persisted for months.

>

> During this time I started a relationship with a regular physician

> and they did some electro stimulation to get it to stop spasming

and

> I started Flexeril/Vicodin. I also got set up with a home unit

which

> helped but very slowly, and not enough for significant

improvement.

>

> Then I saw a back doctor named Dr. Frey (Sweedish Spine Institute)

> who took an xray of my back and said I had sciatica, but there was

no

> visible damage or disc ruptures. Spaces between vertebrae was

> deemed " normal " . He prescribed physical therapy (Denver Physical

> Therapy) where I finally got the back to stop hurting (spring 2006)

> and these physical therapists were excellent. Unfortunately I was

> still in a bit of pain and uncomfortable doing the exercises and so

> had a lot of trouble with my home routine (I did very little back

> exercises). But at least my back was finally not hurting!!

>

> In the spring of 2006, the general physician also prescribed

another

> xray of my back and they noticed a small amount of erosion on some

of

> the vertebrae but my back looked healthy.

>

> I also had a bone density scan done at Sweedish, which indicated my

> bones were mostly osteopenia borderline osteoporosis. I was told to

> take calcium/vitamin D by my gastroenterologist, which I started.

The

> interesting thing is that my bone density is osteoporosis in the

> vertebrae around the herniated discs. Most of the rest of my body

is

> osteopenia.

>

> In July 2006, I bought a bike and was riding with few troubles

which

> really helped to loosen up my leg muscles and I was doing fairly

well

> for a few months. I tried to ride as much as I could and rode about

> 100 miles (streets/trails) in a few months.

>

> Then my back went out again in November, and I saw another back

> doctor at Western Orthopedics (Dr. Birney) and he did an MRI of my

> lower back. He found 2 herniated discs, the L4-L5 disc and the L5-

S1

> disc, causing moderately severe stenosis. One herniated to one

side,

> which formerly (not currently) was causing sciattic pain in my

right

> leg, the other herniated to the other side, causing my current pain

> in my left leg/hip, and numbness in my toes. I think there is

> diminished feeling and circulation in both of my feet.

>

> In addition, I don't feel when my bladder is full (yes I told my

doc

> about this) and also get extreme back pain sometimes when I have to

> go poop. The doctor had initially recommended a surgery which uses

a

> product called " dynasys " but now that he knows I have such a low

bone

> density, I may not be able to have the surgery, I have a follow-up

> appointment with the back doc next week. I'm also " in the market "

for

> a second opinion, if anyone knows of someone in the downtown Denver

> area.

>

> Finally, I had a stool culture over the late summer that indicated

a

> high level overgrowth of klebsiella, citrobacter, and proteus

> bacterias in my stool, as well as NO LACTOBACILLUS PRESENT. Which

is

> a surprise because I was eating yogurt and VSL3 every day. So I

have

> been on tannins and berberine to gently balance the gut out, and it

> has been working great. I had previously been on a couple courses

of

> Flagyl and a couple courses of Cipro, but as soon as I would stop

> taking them, I would get sick again really fast. But the infection

is

> much better than it was.

>

> So I am at a point where I am sooooo debilitated by my back and not

> able to go to work every day, not able to do dishes or other things

> (walking/standing/sitting are all very painful and need to be

> extremely limited right now). So I'm wondering what to do and

looking

> for answers to my questions (see first paragraph) to see if anyone

> else can relate?

> Thanks for your help!

> Jarad

>

[Guest guest]

4-8 benadryl

> > Thanks for your help!

> > Jarad

At a time??

How can you function?

:^O LOL