please give me advice/very confused

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mia
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please give me advice/very confused

Post by mia »

Hello again. I've decided to ask for your help and lay it all on the table. I'm confused and really do need some help. I have not given the whole of my recent distress for reasons I'll now explain. I'm back here because I'm worried and I don't know what to do. In August 2009, I began having all kinds of muscle aches and pains. I don't even know if they are muscle- sometimes I thought it was nerve pain, sometimes I thought it was bone pain- It all moved around so much, came and went, and changed; in my leg, my hips or groin area, in my shoulders, in my hands, my feet, my arms, my biceps. I was getting up in the middle of the night thinking 'what is WRONG with me! I saw my doctor who gave me blood tests, and sent me for an xray and a Ct scan - all of which showed nothing significant. He told me to take aspirin- which dismayed me ( as I've read that aspirin isn't a good idea for people with Collagenous colitis). I think he forgot I have that. He sort of 'gave up' and I could tell he wasn't too interested- he made me feel like I was exaggerating or something. I was embarrased and I haven't gone back to see him, but my pains still come and go. I then saw a chiropracter - who I didn't feel confident in, then a physiotherapist- who thought the hip and leg pain was the sciatic nerve and the femoral nerve. She gave me exercises etc- which did seem to help. But now, months later, I still have the pains, but also in my hands and biceps and arms. ??It confuses me so much. Is this part of the CC? Could I have some sort of vitamin deficiency because of the CC? Or am I developing some other kind of problem. Or could this be from too many hours on the computer ( as I have had to over the past year or so for work).
Any thoughts,and advice would help. I'm so confused by all of this. ( My CC is still active- flares up, settles down, then flares up again - I'm getting tired of it all after 10 years of this!)). I'm thinking I need to go back and see my doctor again, but with new firmness. What should I ask for?
Your thoughts? Tex, anyone?
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Post by Joefnh »

Mia first of all thanks for posting.

MC can certainly present with pain in other areas of the body, but so can other diseases. I am not sure what blood tests that you had, but certainly your doctor should be ruling out any of the other systemic conditions. Do you have a GI doctor or just a primary care physician? That may be important as most PCP's do not have the expertise to recognize the seemingly disconnected symptoms. You may also want to consult with a rheumatologist to rule out other autoimmune conditions.

Your comments on vitamins is important in the MC certainly does cause malabsorption issues in the GI tract. Tex can probably outline what might help best.

I have had a similar experience to you in that I started with the pains throughout the body, but in my case they were generally located in the lower back and legs area. For the last 10 years the diagnosis was fibromyalgia and they sent me on my way with Ultram a modest painkiller that did slightly mask the pain, but obviously did nothing to treat the disease. It was not until this past April and having my first real flare with D+. I was eventually diagnosed with CC and Crohns.

In my case I was treated with Entocort 9mg/day which immediately (within 24 hours) stopped the aches and pains and within 10 days stopped the D.

I certainly would try to consult with a GI specialist if you have not already done so.

I'm sure that Tex and others can fil lin the areas that I missed

Take care and I hope you are able to find the right treatment path.

--Joe
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tex
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Post by tex »

Hi Mia,

Yes, if your tests showed no other likely health issues, then your aches and pains are almost certainly a part of your CC symptoms. When my symptoms first started, I thought that I either had food poisoning, of a bad case of the flu, but the aches and pains, (plus headaches, migraines, backaches, stiff neck, etc.), just went on and on, anytime that my MC was active. These symptoms are the result of the leaky gut syndrome, which is also very commonly associated with MC.

Not all of us have the problem, but many of us do, and for those of us who do, it is a major problem. Not only does it cause muscle aches and pains, (stiffness, migraines, etc.), but it also causes a type of arthritis unique to the disease. Some of my joints became inflamed, swollen, very painful, etc., and this lasted for years, until I cut gluten out of my diet, and then the symptoms slowly went away.

I no longer have any of those symptoms, because I remain faithful to the GF diet, and my rheumatoid factor is negative, so I obviously don't have rheumatoid arthritis, but when I was reacting, my symptoms were very pronounced. I can recall thinking that I must have the worst case of the flu in the world, but looking back, obviously, it was all connected with MC.

Frankly, I doubt that consulting with a GI doc about these symptoms would be beneficial, because most GI docs insist that diet has nothing to do with MC, so they do not associate gluten-sensitivity with muscle aches and joint pains. Entocort, (or some other corticosteroid), can usually minimize those symptoms, but they do not treat the cause of the problem. The only way to prevent the inflammation in the first place, is to avoid all sources of gluten, and in most cases, casein, also.

Since you have been symptomatic for so long, some of your pain could indeed be originating in your bones, because you are probably deficient of certain vitamins, (especially the "B" vitamins, and vitamin D). Low B-12 is very common with long-time MC sufferers, and a deficiency of B-12 can cause all sorts of physical and neurological symptoms. Inadequate vitamin D, (along with gluten sensitivity), leads to osteoporosis, no matter how much calcium supplement you might be taking. (IOW, as osteoporosis develops, it can be painful). With the malabsorption problem that often accompanies MC, the most practical way to get adequate uptake of B-12 is by monthly injections, or by using the methylcobalamine form of B-12, which is sold in the form of sublingual lozenges, designed to be dissolved under the tongue, where the B-12 is absorbed directly into the blood stream.

Be sure you are getting an adequate amount of folic acid, also, since it is necessary for the proper utilization of B-12. You can buy sublingual B-12 lozenges which also contain 400 micrograms of folate, (which is the recommended minimum daily intake), and these work very well for most of us.

Yes, aspirin, (and all other NSAIDs), is definitely contraindicated for MC. You have to be your own health advocate, because so many doctors in this country know very little about treating MC, but they think they know what they're doing. Acetaminophen, (Tylenol), can be used, since it will not trigger inflammation for MC patients the way that NSAIDs do, but many members here claim that it does not help their pain. I find that if I take a couple of capsules of it, with food, before the pain gets too intense, I can usually get pretty good results.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
mia
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Post by mia »

Thankyou Joe and Tex. It sure helps to have people to talk to. I'm going to go and see my doctor and ask to be checked for adequate vitamin levels etc. In the meantime, I'm going to look for the B12 lozenges. I just hate it that the doctors don't seem to know much (or even care). I probably should see some kind of GI specialist ( a plane flight away), but I guess I've avoided them because I think they'll just give me steroids.
The GF diet ( the SCDiet) has, over all these years, kept things ok- usually just D in the mornings, but none all day or night ( except for flares). I've cut out gluten again, but haven't been doing the SCDiet this time.

Thankyou!
Mia :sad:
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Post by mia »

Joe- are you still on Entercort- or did it stop the D and put everything into remission? Mia
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Post by mia »

Have you guys heard of Boswellin- ( and more specifically ' 5-Loxin ')? Could these be a safer/effective way to prevent/treat inflammation? I actually came across some research ( not just an herbal company - but scientific results from some university) that seemed to be saying 5-Loxin was 'not inferior to that drug they use to treat inflammation- starts with an 'm'- mesamine- or something like that. ?
Mia
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Post by ant »

Dear Mia,

I have been taking Boswellia 800 mg a day for about three months (it is a herbal supplement), together with Entocort 3gm a day (after tapering down from my original 9gm day) and GF, DF, SF, egg, legume and nightshade free diet. I am now in what I might describe as 85% remission (e.g. in the last three months I have had a 2 to 3 day bout of D in the mornings three times. Otherwise 1 to 3 BMs a day, no urgency, ranging from soft and loose to firm. No bloating or rumbling).

I do not know if Boswellia is helping or not, but am not changing anything at the moment.

Dear Tex, Recently I have had what I thought was slight tendon inflammation in the arm and right leg. But my doctor has told me it was a slight inflammation of my veins (not tendons) and that when I next fly I should take half an aspirin for three days before to make sure I have no clots. Hmmm a catch 22 :sad:

All best Ant
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tex
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Post by tex »

Ant,

Hmmmmm. I'm not familiar with that issue. I wonder if the clot risk he referred to is based on the phenomenon of deep-vein thrombosis?

From Wikipedia:
Main article: Traveller's thrombosis

There is clinical evidence to suggest that wearing compression socks or compression tights while travelling also reduces the incidence of thrombosis in people on long haul flights. A randomised study in 2001 compared two sets of long haul airline passengers, one set wore travel compression hosiery the others did not. The passengers were all scanned and blood tested to check for the incidence of DVT. The results showed that asymptomatic DVT occurred in 10% of the passengers who did not wear compression tights. The group wearing compression hosiery had no DVTs. The authors concluded that wearing elastic compression hosiery reduces the incidence of DVT in long haul airline passengers.[23].
Note that even though they showed no symptoms, fully 10% of the airline passengers who did not wear compression hosiery, developed blood clots. :shock: That's pretty significant.

http://en.wikipedia.org/wiki/Deep_vein_thrombosis

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tex »

Mia,

One other member, Hotrod, (RUBYREDDOG), tried Boswellia without success, but his case was exceptionally difficult, because he has double DQ1 genes. It's certainly possible that you might have better success than he did, because I also remember reading the research showing that in some cases, Boswellia serrata extract can be more effective than mesalamine. No medication works for everyone with, MC, so we have learn by trial and error, whether or not it will work for us, individually. Here are some of his posts, which you might find helpful:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8928

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9755

I can't find his post, at the moment, where he posted that he was giving up on the Boswellia treatment. He was successful in achieving remission, however, after using Entocort EC for a while.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9821

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by ant »

Thanks Tex, yes I think he was worrying about thrombosis, given the way my veins are. I will need to look more into it.

Best ant
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Post by JoAnn »

Hi Mia, I'm sorry you're having such a difficult confusing time, but I sure can relate. When all my autoimmune issues started I didn't know what was happening to me and the doctor I had seen for the past 20 years gave up on me too. I learned you don't really know what kind of a doctor you have until you really have problems. I went from doctor to doctor and assorted specialists trying to figure out what had happened to my body. They put me on assorted drugs that just made me sicker. The turning point for me was finding a doctor who practiced integrative medicine (a combination of traditional medicine and holistic approaches)and finding this board. An integrative doctor will look at you as a whole and not just as individual parts to be treated. My story is way too long to share here, but I ended up discovering that I had thyroid problems and mc which both caused me all sorts of strange physical pains and problems. Along with that my vitamin D levels were almost non-existent. I was put on a plan with bio-identical hormones, vitamin and mineral supplementation, fish oil, a few prescriptions and the gf diet this board recommends. I also found out through Enterolab testing that I was sensitive to gluten, eggs, soy, and dairy. I also use entocort that has been a great help to me. I am on 1 pill per day now (3mg) and will soon be tapering off. Just to summarize, finding out your food sensitivities is essential to regain your health and well-being. This is an individual journey and takes time, so be prepared to be patient. Is it possible for you to try to find an integrative health care provider? My pcp has been a key factor in regaining my health and her support has been a great comfort to me. She supports everything I've learned on this board. My former doctor left me feeling just the way you describe your feelings are right now. It took me a while, but I found someone that really cares about my well being. Entocort has allowed me to continue working and to enjoy a good quality life. I've been through a lot of trial and error like everyone else on this board and there's no one easy way that works for everyone. Some people achieve remission sooner than others. I hope this helps and I hope you will find help in the wisdom on this board. I also hope you can find a doctor that will care about your well being. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
mia
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Post by mia »

Thanks for your replies everyone. I am going to try the Boswellin, and see how it goes. I guess I'll see my doctor to get tested for vitamin /mineral etc deficiencies. My last round of blood tests etc showed all ok though- and no thyroid problem either. I believe I was tested for some vitamin deficiencies then too. If I see a specialist- I know they'll say I have to have a colonoscopy before the referral ( They said that last time- but I didn't do it- so didn't pursue a specialist).

Tex- do you think a colonoscopy is safe?

I do want a referral to an allergist though ( also a trip south to Vancouver).
I'm off to make chicken and rice for supper- hopefully it'll be ok. Things are really 'iffy' right now- some just ok nights after suppers- some not so good. Sigh.
Mia
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Post by Joefnh »

Mia I am in week 5 of Entocort dosing at 9mg/day. The plan is to taper down starting in July. My response has been a total cessation of D within the first 2 weeks. At week 5 I am now fairly normal.

Side effects have been minimum and have all but subsided now. I am also following a simplified GF diet that I will continue until July.

Hopefully in July I may not need any meds

--Joe
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Post by mia »

Joe- that sounds so promising. Makes me wonder if I should have taken meds years ago. I'm just so distrustful of pharmaceuticals!Do you know if remission for people who have used these meds is permanent? I sure hope so. I found some info on Botswellin. For now I'll do that as well as the GF diet. No doubt it will take a bit of time before I can see a specialist. I'll bet my doctor won't give me meds without that. I think I'm ready to try them.
Here's what I found on Botswellin. It looks promising anyway. I'll be starting this today.
I will report on the effects.

U.S. National Library of Medicine
National Institutes of Health Search:All
(text)Abstract (text)MEDLINEXMLPMID ListCreate File
1 selected item: 17764013FormatSummarySummary (text)AbstractAbstract (text)MEDLINEXMLPMID ListE-mailAdditional textE-mail"SPAM" filtering software notice
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Int J Colorectal Dis. 2007 Dec;22(12):1445-51. Epub 2007 Sep 2.

Boswellia serrata extract for the treatment of collagenous colitis. A double-blind, randomized, placebo-controlled, multicenter trial.
Madisch A, Miehlke S, Eichele O, Mrwa J, Bethke B, Kuhlisch E, Bästlein E, Wilhelms G, Morgner A, Wigginghaus B, Stolte M.

Medical Department I, Technical University Hospital, Fetscherstrasse 74, 01307, Dresden, Germany. ahmed.madisch@uniklinikum-dresden.de

Abstract
BACKGROUND AND AIMS: The objective of this study was to investigate the effect of Boswellia serrata extract (BSE) on symptoms, quality of life, and histology in patients with collagenous colitis. MATERIALS AND METHODS: Patients with chronic diarrhea and histologically proven collagenous colitis were randomized to receive either oral BSE 400 mg three times daily for 6 weeks or placebo. Complete colonoscopy and histology were performed before and after treatment. Clinical symptoms and quality of life were assessed by standardized questionnaires and SF-36. The primary endpoint was the percentage of patients with clinical remission after 6 weeks (stool frequency<or=3 soft /solid stools per day on average during the last week). Patients of the placebo group with persistent diarrhea received open-label BSE therapy for a further 6 weeks. RESULTS: Thirty-one patients were randomized; 26 patients were available for per-protocol-analysis. After 6 weeks, the proportion of patients in clinical remission was higher in the BSE group than in the placebo group (per protocol 63.6%; 95%CI, 30.8-89.1 vs 26.7%, 95%CI, 7.7-55.1; p=0.04; intention-to-treat 43.8% vs 26.7%, p=0.25). Compared to placebo, BSE treatment had no effect on histology and quality of life. Five patients discontinued BSE treatment prematurely. Discontinuation was due to adverse events (n=1), unwillingness to continue (n=3), or loss to follow-up for unknown reasons (n=1). Seven patients received open-label BSE therapy, five of whom achieved complete remission. CONCLUSIONS: Our study suggests that BSE might be clinically effective in patients with collagenous colitis. Larger trials are clearly necessary to establish the clinical efficacy of BSE.

PMID: 17764013 [PubMed - indexed for MEDLINE]
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tex
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Post by tex »

Mia wrote:Tex- do you think a colonoscopy is safe?
Well, the GI docs do a lot of them, every year, and I've never heard of someone personally, who had a serious problem, (of course, most of the people I know, who have had a colonoscopy, are members of this board. So far, no one here has ever reported any serious complications from a colonoscopy exam. :xfingers:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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