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could inflammation outside your colon ramp up inflammation throughout your body

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Ulcerative Colitis
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Posted 6/3/2014 8:13 PM (GMT 0)
I have Crohn's colitis and with it I have joint pain. I was feeling much better after being on LDN for a few months along with sulfasalazine, but I still had some joint pain in my heels. It may sound stupid, but with having the joint pain in my heels for so long, I felt like I kind of forgot how to walk correctly. I was wearing sandals so I picked up my heels more than I normally would if I was wearing regular shoes.

The next day my right heel, which is the one that was actually the lesser inflamed one, really started to hurt, and now a few weeks later, it seems like I'm back to almost where I started when I flared, my GI symptoms are a lot worse and other joints are bothering me again with a lovely bonus of acne. :(

Is it possible that the inflammation from my heel has further progressed systemic inflammation? And will upping my LDN from 3 mg to 4.5 make any difference?
Posted 6/3/2014 8:20 PM (GMT 0)
I think the order of events is probably reversed - it seems likely to me that you've got a Crohn's flare that has made your heel feel worse, but there's enough mystery about this process to make me say I don't have any idea. Have you recently had a cold or some other even that would trigger a Crohn's flare?

And yes, having inflammation in your feet can totally ruin the way you walk, and in fact can make things hurt elsewhere - hips, knees, back etc. It sounds like you have plantar fasciitis, which is a ***** to treat, but not impossible. If you go to a physical therapist, s/he can show you how to tape your feet, and maybe even get you to sleep with a boot, and hopefully relieve some of the inflammation in your feet. You can also use ice on your heels when you're sitting around the house.
Posted 6/3/2014 8:42 PM (GMT 0)
Hi Kazbern,

Well, yes, definitely the Crohn's had made my heels inflamed, but everything started to subside last month until after that walk. I've been flaring since December, but I was finally starting to get things calmed down until that happened. Sigh...I'm really hoping I can get back to that baseline again soon.

I have had plantar fasciitis before when I was a runner, that was back in a different life, pre-Crohn's. This feels a lot more painful, and it's more the back and side of my heel, so I'm not sure if it is, because it feels different. I have an appointment to see a podiatrist, but I'm not even sure if things will really help unless I really get my Crohn's under control.
Posted 6/3/2014 9:04 PM (GMT 0)
I used to be a runner too. And I had terrible joint pain as part of my IBD. I've had plantar fasciitis also! It was horrible - took a solid 6 months to get over it. I had it under the middle toe, not at my heels.

As a random aside - post partum I had horrible, horrible foot pain in addition to the IBD flares (I was diagnosed after the birth of my first child). That felt like a sudden arch collapse but it went away after a few weeks. I still have no idea what that was about, but I think it's a fairly common experience. You aren't post partum are you?

What I started out trying to say was that my enteropathic arthritis seemed to pick joints that I'd previously injured - one knee, one elbow, the other shoulder, etc. There were also joints that participated that had no history of injury (wrist, pinkie, thumb). But I did hypothesize at one point that the enteropathic arthritis was exciting "scar" tissue in the joints. What we are dealing with is usually enthesitis - an inflammation where the tendon and bone connect, and I think that's a common injury site for athletic people.

Sorry you're struggling with all this, it totally stinks. And I think all of your DRs will agree that the heel pain should subside as the Crohn's flare gets under control.
Posted 6/3/2014 9:33 PM (GMT 0)
Thanks, Kazbern. Yes, plantar fasciitis can really be really hard to overcome. I ended up getting the Strassburg Sock and stopping all running which finally helped it. I didn't realize you could get it under you toes though. At this point I certainly don't run, but I'd settle for being able to walk normally. :) It's always kind of an eye opener when you compare your goals from before Crohn's to after Crohn's.

That is an interesting theory, and I have both experiences as well as far as some of the arthritis being linked to past injured areas and others not. I often wonder if they'll ever figure out why certain joints are attacked and why the pain migrates. It's so strange, but so is this disease.

Yes, I am post partum. I think just any hormonal changes I'm having are really contributing to my Crohn's. It's what initially set off my flare, my first post partum cycle. I don't think my body knows what do do. I'm really trying to avoid having to try Imuran, but if this continues, I may. I want to be able to walk around normally and not find myself avoiding doing things because it involves my walking from A to B. Thanks for listening. :)
Posted 6/4/2014 1:52 AM (GMT 0)
Hey Octobergirl - I have Crohn's-Colitis as well. When mine first set in and I really flared my right heal/ankle swelled, maybe even both but I remember my right was the worst. Was just hoping this is not the case- the onset of a flare for you.

I also wanted to ask if you have read/considered the Wild Oregano Oil thing... It seems to have given me my life back. I'd like to know if it might help others specifically with Crohn's-Colitis.

Also is your disease very aggressive? Like do you go from feeling not so great to full on flare quickly? Mine was like that.... Usually in a matter of days. So was just worried about the swelling and a connection to a fast setting flare.
Posted 6/4/2014 2:37 AM (GMT 0)
Hey Canada Mark,

I've been in a flare since December, unfortunately, and I was getting better but appear to be worse again. I've already done prednisone for this flare which helped some but not enough. Yes, unfortunately my disease is really aggressive and gets worse really quickly. So I'm pretty bummed I'm starting to feel worse again because I don't have many other options left.

Actually, I started WOO a couple weeks ago but had to stop since it really wrecked me. It have me serious liquid D and horrible cramping. I only made it up to 6 drops. But I did read some people take it in a capsule, so maybe that would help. How often and how much do you take, and how long did it take for you to notice any difference? In the past Cipro got my inflammation down to normal levels, so I think there's some bacterial link to my disease, but I did a course in February and it didn't seem to do anything this time. Have antibiotics helped your disease in the past?
Posted 6/4/2014 3:10 PM (GMT 0)
It's interesting that I think for me Cipro helped substantially as well but as soon as I stopped things would get worse and generally quite fast. I took a few courses to get out of a flare over the first few years from when I was diagnosed. Mostly it was Cipro/Flagyl combo but I recall the Cipro having the largest effect. Eventually I developed some nerve damage from all the antibiotics. My GI kept saying we cannot keep returning to antibiotics and pred - so that's when I chose Remicade and Methotrexate over surgery, which worked well, but not perfect. The side effects were pretty intense for me at times and eventually I had to stop. SCD works wonders for me but does not keep me from flaring. I still tend to eat a lot of SCD foods out of habit.

When I first started the WOO I took the Gel Caps as well - foodsmiths.com/shop/product_view.asp?id=1876852&Storeid=AFAD58D0F8C44341BC87E842D9594B64&private_product=1 This product though I just bought it at the local health store.

I also take Imuran, so the combo of the Imuran and this did the trick for me at least. Though I can see you are reluctant to try it. I am lucky and don't seem to have an issue to it. For a tiny bit there I thought I might be reacting badly or allergic to it but that has since gone away. I have taken Imuran in the past without much success, but again, the combo of the two did something.

I wanted to say I think it may actually be the lower dosage of WOO that might have given you the D and that when I first started I had some pretty crazy IBS type "D" etc... but any small amount of blood went away fast and mucus lessoned. The mucus in my bowel movements stayed for quite some time until eventually it was rare to see mucus. Every now and then I still do though.

It took a solid month before I really noticed a big difference but two weeks in I could tell already there was some pretty positive changes (no blood/slightly less urgency). For months I had very ranging D and normal and semi-solid stool, and frequency was up and down, but eventually things settled.

---------------------------------

One's always hesitant to say try something for fear of making someone worse... It would be horrible to see someone flare because of it but here is what exactly I take: I just copied below from another post...

8-10 Drops of OregaSupreme Oil 3x Daily - OR 1 OregaSupreme Gel Cap 3x daily
For the first 4 months I also took 3-4 Drops of Cinnamon Leaf Oil 3x Daily but stopped once I really started to feel good. I just take Certified Organic Cinnamon Leaf Oil for aromatherapy and just put it in a gel cap even though the bottle says external use only... no bad effect for me at least.

When I take drops I place all drops in a single empty gel cap and take with water or whatever. I take it first thing in the morning, early afternoon and 5pm

1 tablespoon potato starch once or twice daily and/or try a butyrate supplement.

BioGia (This is the Brand Name) Drops every night (5-8) - so this is straight L.reuteri but in liquid form.
Renew Life Critical Care 100 Billion - Mainly because is has l.Plantarum and this seems to work very well with the Reuteri.

I have tried it without the reuteri and plantarum and things work better with it. Though I have cut back to every other day now with the probiotics and this seems to be working very well.

I have tried a higher dose of WOO and things seemed to worsen, I tried a lower dose and things became uncomfortable. For me (and I suspect others) this may be the optimal dosage.
Posted 6/4/2014 6:09 PM (GMT 0)
Hey Canada Mark,

Thanks for all this information. It is interesting to hear the the Cipro seemed to help you as well. I'm sorry to hear you developed nerve damage from it. I'm actually really reluctant to ever take it again, since whenever I get arthritis, it's actually usually in my tendons more so than joints, and I know Cipro can really cause tendon damage amongst other things. I was actually on Remicade and Methotrexate as well when I first was diagnosed (after prednisone and sulfasalazine not doing much). I didn't have really any side effects, but it stopped working after about 2 months, except it did keep my joints OK.

Did the Imuran keep your joints OK? I don't know why I'm reluctant to try it, I guess I just got used to being on something more mild with less possible side effects, but I think the only reason I was in remission was due to hormones from pregnancy. I'm open to trying it but really am thinking kind of as a last resort.

I did SCD for almost 2 years, but it didn't seem to do anything. I'm now on autoimmune paleo and it doesn't seem to be doing anything either. I just got my CRP and it was 8 on a measure of less than .5 being normal. Have you tried LDN at all? I get frustrated that things which seem to work for everyone else don't seem to work for me.

So, do you take the WOO now as drops and not in a gel cap anymore? Maybe I should try gel caps. After I seemed to be getting worse GI-wise, I thought to stop. I tried some cinnamon oil to see if that would get any better but it really seemed to do the same. I'm afraid to try more since I reacted so poorly, but I want to feel healthy again, so at this point I may just try again. Did you ramp up or just start with the full 8-10 drops? Also does the probiotic have to be L. reuteri? I just bought some prescript assist.

Are you on a restricted diet still? Sorry for all the questions. I just want to feel healthy again and am hoping to avoid having to change meds.
Posted 6/4/2014 7:56 PM (GMT 0)
Why not try Imuran and continue using sulfazine for the joints?
Posted 6/4/2014 8:27 PM (GMT 0)
I hear ya... we all want to feel healthy lol. It's so darn frustrating, especially when nothing seems to work the same for everyone.

My diet is not very restrictive at all anymore. I just avoid breads, pasta (so anything gluten) as much as possible but a little now and then I seem to be able to tolerate. The other day I had a whole wheat steak wrap with zero negative effect so that was a big deal. I eat potatoes almost every day, and can even eat oatmeal so this was huge for me. If I eat to much wheat though things start to get wonky and I have to go back to SCD for a day or two and things get back on track.

Let's see here - The only joint pain/arthritis type pain I developed was about a year and a half into Remicade. It went away on stopping the Remicade and has never come back. I also only ever experienced joint swelling (specifically in the ankles) when I first flared badly, and maybe once or twice there after. I have never been as bad as I was initially so that is probably why the lack of swelling.

I have heard from others (with Arthritis) that Imuran keeps their joints functioning well - so I really wouldn't shy away from it. It took me forever (about 8 years!) to realize sometimes we can't get around needing the meds. Reading about the side effects freaked me out and caused me concern so I kept putting it off... one day I just said screw it as like you I had to do something and haven't looked back.

So I really don't know what to say - sounds like we both have/had sever inflammation.

Here is exactly what I did that one day when I said screw it... I needed to find a solution.

I went to my GI and asked for a course of Prednisone cause it always works at high dose. And I asked to start Imuran right away again as well. I did this because I believe getting the inflammation under control is number one... then at the same time I added the WOO as mentioned above but in GelCaps 3x daily. I did this because I thought maybe bacteria or something were at the root based on prior response to antibiotics like you.

The combined efforts of everything brought me to today (some 8 months later) with virtually no symptoms. Or 95%+ remission. I have never experienced this before.

I added the Rheuteri based on others success and what I have read. It seems they block and prevent other bacteria from crossing the mucus and contacting our epithelial barriers. So rheuteri prevents bacterial translocation... l.plantarum does this as well.

So these where the only two probiotics I was interested in. I can't say anything about any others because I have not tried them, except for probiotics with a lot of bifo bacteria in them. These cause me distress and discomfort. Actually a lot of probiotics did in the past as well.

If you want to try doing what I did 100% the same, then it would be a course of Pred, starting Imuran and doing the WOO as mentioned so all three.

It also took a heck of a lot of patience... some days I thought I was worse, or things felt weird etc etc etc but I just stuck to it.

If I had to suggest something - I would say maybe keep your meds the same but try adding Imuran (for the inflammation) and try WOO gel caps in place of antibiotics. Maybe something like that might help together... or synergistically.

I wish I had a better answer. And I most certainly don;t want to see anyone get worse. So give it some thought first - but don't be afraid of Imuran.

Post Edited (Canada Mark) : 6/4/2014 2:30:11 PM (GMT-6)

Posted 6/5/2014 5:31 PM (GMT 0)
Hey Kazbern,

I'm not totally against Imuran, but I was hoping to not have to take it and have just Sulfasalzine and LDN work for me, of course I guess that's not really up to me even if I want it to work. I would really like to stay away from immune suppressing meds if possible, but it may not be if I want quality of life. I've upped my LDN to 4.5 now, and am hoping things will clear up or at least get back to baseline before things got bad again.

Mark,

Thanks for all you information. Again, as I said before, Imuran isn't out of the question, but I want to give the highest dose of LDN a chance for longer and hope that I can somehow get better. I must have some kind of bacterial/viral/fungal thing going on, because it seems like every time I take anything that is a antiviral or anti fungal/antimicrobial I get worse GI symptoms. I thought I might have SIBO so I bought some monolaurin and took some yesterday and am having worse D. So that's happened from WOO, cinnamon oil and now monolaurin, and actually even homemade sauerkraut, so to me that means I've got something that isn't supposed to be in my body.

I'm going to try the monolaurin for a bit, just because I read that it's not as harmful to the beneficial bacteria in your gut, but at this point, I'm not sure how much I have left anyways. If that doesn't seem to help, I'll probably give the WOO another try. I think with any of these things I'll have to get through the die off symptoms and then hopefully after that things will get better. I'll report back if I decide to try either the Imuran or the WOO.

I'm glad you've found something that works so well for you and that you don't have to be so strict with your diet. I think the stress of being so consumed with what you can and can't eat can really wear on you. You're absolutely right that we need to just do what we can to have quality of life. I used to want to be med free, but I don't think that's a possibility for everyone, and if being med free means no quality of life, then it's not really worth it.
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