Crohn's remission with external symptoms?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/7/2009 8:51 AM (GMT -7)   
My digestive symptoms seem under good control, but for the past couple of months, I've had achy muscles in my arms and legs. Some of the pain seems related to lower back/ sciatic issues, but then I also get pain on the side of my knees, and just all over achiness, kind of like the flu, but I'm not sick otherwise. It is definitely worse at night when I'm tired for some reason. My internal med doc is a very nice guy, but doesn't seem to know a lot about Crohn's. My GI is great, but I'm not scheduled to see him until January, and I think since my gut seems fine, he may not be able to help me with this. Should I be requesting bloodwork? Any ideas of vitamins, food supplements that might help? Maybe this isn't even related to my Crohn's. Any suggestions would be appreciated.
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/7/2009 5:09 PM (GMT -7)   
bump
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2009 6:19 PM (GMT -7)   
I think that it is related. There is a common sacroileal problem that affects a percentage of people with Crohn's and a bunch of aches and pains that seem to come with CD. I recently was reading an article about extraintestinal manifestations of Crohn's. The author was interested in a particular kind of joint swelling that comes with CD and mentioned several other painful joint problems that arise from CD like reactive arthritis, psoriatic arthritis, sacroileitis, inflammatory back pain and the one he was interested in which he did not give a name to, but others have referred to as enthesitis. It is an inflammation of the ligaments and tendons around a joint and is characterized by swelling. Enthesitis will eventually go away doing no permanent damage, but it can last from a few days up to10 weeks for the milder sort and for multi-joint swelling, it can last up to two years. He seemed to think that the milder enthesitis came up during a flare but the longer lasting kind went on regardless of whether there was an accompanying flare or not.

I also think that there is a tendency for tendinitis to go with CD, but that is harder to find confirmation for.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2009 6:23 PM (GMT -7)   
As for suggestions, one unusual aid for arthritic problems is probiotics! Not the first thing that you might think of.... The other possible aid is antioxidants - vitamins C, E and quercetin or co-enzyme Q10. They help a bit by reducing the inflammation process.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/8/2009 7:23 AM (GMT -7)   
Ok sounds to me like you might also have Fibromyalgia. I know many of us with CD do. I started taking 2000 units of Vitamin D and it has helped my joint pain SOOOO much. I too am in remission, my guts have been doing so well, and now my joints are feeling better too since I added the Vit D. I have been taking good probiotics for awhile, and they didn't help my joint pain at all, just the guts. Give the vitamin D a shot and see if you get the relief I did. I have posted a link about Vitamin D and pain for you. Good luck!

http://pain-topics.org/pdf/vitamind-brochure.pdf


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"*

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/8/2009 8:08 AM (GMT -7)   
Thanks, I'll try your suggestions. Nanners, I noticed that the Vitamin D brochure said to check with the doctor if you have IBS or Crohn's. Do the supplements upset your digestive system?
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


twokatmew
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/8/2009 11:16 AM (GMT -7)   
I'm taking 2000IU of D3 daily, but my rheumatologist checks my levels periodically. Despite this daily dose for over a year, my levels are not as high as he'd like to see. Nevertheless, I believe it helps me. I know of no problems vit D causes in Crohn's patients. (I was diagnosed in 1975.)

I too have fibromyalgia and what my rheumatologist calls "Crohn's arthritis." Whereas gut symptoms used to be my first signal Crohn's was rearing its head, it's now arthritic symptoms in nearly every joint. When it gets bad enough, they generally have to increase Prednisone, as (in me) it's a sure sign my guts will flare next. Apparently this is a non-degenerative form of arthritis. It doesn't bother me too much when my Crohn's is under control.

Post Edited (twokatmew) : 11/8/2009 11:26:36 AM (GMT-7)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/8/2009 1:08 PM (GMT -7)   
The "check with your doctor" caution is because some of us with CD/IBS actually create vitamin D internally and can have already high levels of vitamin D. You want to get your blood level checked to avoid overdose.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/8/2009 2:25 PM (GMT -7)   
Thanks everyone. I have been avoiding going to the doctor, but I think I need to deal with this! I'll ask about the Vitamin D blood levels
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


twokatmew
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/8/2009 2:39 PM (GMT -7)   
Interesting, Keeper.

We *all* make vitamin D from exposure to the sun. Consequently many of us living in northern climes are deficient. I'm interested in your comment that "some" with IBD make their own vit D. How is this different from everyone making it?

I realize vit D is not a water-soluble vitamin, thus we can get too much. I've just never heard of humans *making* too much vit D, so I'm curious. :-)
Crohn's disease (1975): Prednisone, Entocort, Pentasa, Imuran, Prevacid
Asthma: Advair, Intal, Atrovent, Xopenex
Prediabetes, MVP, osteoporosis, fibromyalgia, sleep apnea


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 11/8/2009 3:36 PM (GMT -7)   
I have all of your symptoms. Despite monthly B12 injections, I'm almost unbelievably exhausted all the time. Some people on this forum suggested that I start taking Vitamin D. That sort of shamed me into taking a multivitamin (which I hadn't been taking) and some extra calcium and D3. These seem to have helped a bit with the fatigue. Although I'm still a little tired and weak, I don't feel as if I'm slogging through quicksand all day or looking at the world through heavy gauze.

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 11/8/2009 7:29 PM (GMT -7)   
Hi gumby44,
 
I would definitely have your vitamin D level checked.  After finding out I was low, I also began taking it regularly (I now take 2000 IUs per day as my Dr. recommends).  It seemed to help a little with the body aches, but I definitely still get them---kind of like what you described, with the overall achiness feeling sort of like the flu, and usually worse in the afternoons and evening.
 
Curiously, when I mentioned my overall body aches to my fantastic GI doc, he said he hadn't heard of that being related to Crohn's.  (He's heard of the joint aches though).  So I'm still puzzled as to what my achiness is caused from.
 
I'm very curious as to what you find out!
 
Oh, and although your vitamin d level might technically fall into the "normal range" on your lab results slip, a "sufficient" level is at least 30.  And according to my primary care doc, at least 40 is ideal for preventing osteoporosis.
54 year old female;
 
Have had Crohn's of terminal ileum for 10 years.   Small bowel resection (my first) on 7-30-09.  Monthly B12 shots.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 11/9/2009 6:36 AM (GMT -7)   
Hey gumby...I am similar to you. My gut is doing very well lately (I shouldn't say that out loud!). My problems have been the muscular, joint and anemia issues. On top of the Vit D that was recommended, I also recommend you check into Vit K and if you are anemic.
When I am anemic, I have a hard time sucking in enough air. I find that is when my muscles fight back with me, then my joints are "tired". I belive that is oxygen deprivation to the muscles. The potassium just helps me with the muscle cramping.
I have also started "babying" my joints. I bought inexpensive support wraps ($4 a piece) to wrap my wrists, knees and ankles. The warmth and extra support have helped more than I can explain in words.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/9/2009 6:55 AM (GMT -7)   
Hey Gumby,

I am extremely sensitive to supplements, but surprisingly, taking the Vitamin D has not affected my guts at all. Its only been a benefit for me.

Good luck!
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"*

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 11/9/2009 7:12 AM (GMT -7)   
There are many things I love about this healing well community, but at the top of my list, is the ability to feel validated with my symtpoms. Sometimes I questions my own sanity, because my symptoms seem so illogical (like having my left hand numb while my right knee hurts!). I feel like I'm nuts, and then I come here, and realize I'm not alone. I'm taking this post with me to my doctor. I won't show it to him unless it feels like he doesn't believe me, but it will be like taking my friends along for emotional support! Thanks for all of the advice!!!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/9/2009 2:32 PM (GMT -7)   
Crohn's actively converts inactive forms of vitamin D into active vitamin D circulating in the blood. This can result in a high blood level of the active form of the vitamin. You need to get blood tests to check on the level because it is entirely possible to have a pre-existing level that is too high already. It would seem likely also that you would have little or no storage of the vitamin, so that deficiencies could appear suddenly. You would also need to avoid supplements while blood levels are high, since there would be a direct addition to the blood levels and little storage.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 8:50 AM (GMT -7)
There are a total of 2,732,067 posts in 300,986 threads.
View Active Threads


Who's Online
This forum has 151152 registered members. Please welcome our newest member, JesperTrottier.
234 Guest(s), 11 Registered Member(s) are currently online.  Details
imagardener2, shliv, Michael_T, ashlingd, ntzguy, Mustard Seed, Traveler, snowboat, Mister Mike, Lisa-Dionne, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer