Can you help me figure out what this pain is?

[killerzoey]

Hi group

I have LRQ pain, sometimes sharp. So that's probably my terminal ileum/ascending colon, right?

What the heck is this intense burning down my right let, buttocks, and low back? Can what feels like a tolerable amount of abdominal burning cause nearly intolerable referred pain like this?

Also, are there 2 kinds of Crohn's pain? I hear people refer to their pain as "burning" and others as "cramping". Mine is definitely burning. It doesn't make me want to double over and doesn't seem to care what position I'm in. Also, it doesn't seem to have much to do with my BMs.

Speaking of which, I have no diarrhea. Occasionally loose stools. Tend more toward constipation. I know I have rectal inflammation from the scope (which didn't really identify Crohn's, only inflammation). Could this inflammation be enough to keep me constipated? Would I otherwise have diarrhea?

I'm so lost! Thanks for reading.

BTW - started Specific Carbohydrate Diet on Saturday. For those of you familiar with it I am doing the intro phase still (way cooked chicken soup, eggs, etc.) to clean out. I am supposed to start introducing stage 1 foods within a few days (you shouldn't go too long on the way limited intro diet) but the SCD book says that I should do this "when diarrhea and cramping have subsided". No diarrhea, but again, does this pain fall under the "cramping" heading?

I've heard good things about the SCD and given that my Crohn's erupted after antibiotic use, I thought I'd take a stab at normalizing my gut flora and seeing if it helps (which is what the SCD is intended to do).

I was drinking lots of ensure the last few weeks and my pain has gotten steadily worse during this time. Could be coincidence but I'm glad to be on a diet that was designed to allow the gut to heal (and off the Ensure!).

Entocort still, doesn't seem to be helping my LRQ pain. Will start Asacol soon. GI said (looking sympathetic) "You don't want to try Prednisone yet, do you?" when I saw her last week. I don't think I do, but don't know how long I should let this go on. I'd like to give Entocort more time but am going to have to start paying through the nose for it as I have no presc. coverage and my samples are running out.

Pill camera is a few weeks out still.

Thanks again for listening

 

[D Bergy]

I would guess it is the illeum. I get a sensation there occasionally.

The buttocks leg thing sounds like Sciatica. But, I am not a doctor. My father has had this from time to time. Here is a link for Sciatica.

http://www.spine-health.com/topics/cd/d_sciatica/sc01.html

I hope the new diet works for you. Let us know your opinion of it when you have been on it for awhile.

Check with your doctor if your symptoms do not get any better. Maybe he has some ideas.

Good Luck

D Bergy

 

[Ilysha]

Referred Pain

I don't get the LRQ, but I do often get really bad referred pain in my right shoulder blade. This pain is often deeper and more intense then my lower back right colon pain. I know they are related because my shoulder only hurts if my colon area hurts, so I would say yes, absolutely it could be referred pain. If you have a good day Crohn's wise and you have no LRQ pain then I would say that's your answer. My shouder pain is particularly bad if I eat somethign I shouldn't.

Bottom line: If one can exist without the other, than maybe there is something else going on. Of course that's just my personal opinion....but based on some experience.

Good luck!!

 

[killerzoey]

That's interesting, Ilysha. Thanks for sharing your experience.

I've been slowly remembering a period of time when I had these symptoms before, only without the LRQ pain. It could be that the LRQ pain hadn't become bad enough to be sensed on its own and that the low back/buttock pain was the first clue something was amiss. I'll just have to keep an eye on it and see.

It is difficult sometimes to know if I"m having a good or bad Crohn's day. I mean, I don't have an immediate reaction to anything I eat. I am just more or less in a state of achiness or burning around my gut and back to one degree or another all the time. And no diarrhea to let me know when I've eaten something bad, either.

 

[killerzoey]

D Bergy, it feels just like sciatica. I think I've had that for a few days here and there, always in my right leg, too. It does seem to correlate with the span of time I've had LRQ pain, though so it seems highly suspicious.

I will definitely post my experience with SCD after a while.

Thanks for replying!

 

[D Bergy]

It may be like my Psoriasis. I never had this before in my life. But, when the Crohn's reared its ugly head now I have Psoriasis also. It is slowly going away finally. Who knows what else is going on unnoticed. It is the unknown that I do not like.

One point of inflammation seems to often lead to another. It is truly a strange disease.

Hope you can get all of it resolved.

D Bergy

 

[Kev]

Hey D Bergy.. Just thinking out loud here... partly in response to my drug reactions of late.. but could your 'psoriasis' be a reaction to any of the drugs you're currently on?

 

[D Bergy]

I do not take any medications whatsoever. I already knew how to prevent inflammation so I did not opt for the Imuran. I do take natural antiinflamatories.

Turmeric
Ginger
Fish Oil

Also a multivitamin.

Green Tea
Lemon Balm Tea
Cherry Pomegranete Juice.

I just drink these whenever.

I got my Psoriasis about one year after my Crohn's symptoms started. I had already been taking a small amount of Turmeric and Ginger for the health benefits.
I started taking six times as much when I learned what the disease was to counteract inflammation.

I am now back down to my small dose since my symptoms are almost completely gone at this time.

I have not been able to connect any of the things I take to the psoriasis. It seems to be at its worse when the Crohn's is at its worse. At the rate it is healing now I am guessing it will be completely gone in about two months. Unless I get another bad flare. If my experiment fails, I am back to square one. But so far so good.

D Bergy

 

[Ilysha]

Chiropractic

Killerzoey,

Have you tried going to a chiropractor? I started going befre I was diagnosed with Crohn's for an old softball injury. Once the Crohn's started, I've found that sometimes getting adjusted gives me relief of both Crohns and my injury symptoms. A good chiro can tell you if its sciatic, Crohns or both. I do a form of Chiropractic whic is called Network Chiropractic, and it's much more gentle than traditional chiro--you don't get yanked around. It take a few weeks to start working, but once it does it's a godsend.

Hope that might help.
-Ilysha