Does Anyone also have IBS (irritable bolw syndrome) with FM?

Discussion in 'Fibromyalgia Main Forum' started by marw, Feb 5, 2006.

  1. marw

    marw New Member

    I am really confused about this. I have dreadful pain in the lower R. side of my belly. Have had it for year and a half. It is very specific to one spot. Docs could not find anything wrong (but have refused to do another colonoscopy because I had just had one prior to the pain) and so they call it IBS. Finally, however, a hernia popped out and I had surgery for it, but the surgery has not healed right. Now, I cannot tell all the time whether it is the surgey incision or the intestine hurting there. I do not want to have the surgery over again, but might have to.

    I thought because I read that many with FM have IBS also that someone here might know something about this: how do you know if you have the 2 together? I know I have Fibro. It has been diagnosed, and I have the symptoms: pain, anxiety, fibro fog, etc. But I do not understand how the IBS fits here. To tell the truth I don't even think I have it, and that it must be something else, but I think someone with both Fibro and IBS might have better answers than I've been getting from docs (who seem to be guessing!)

    It is very painful! I have to take stronger pain med for that than I do for the Fibro!

    Thanks very much.

    P.S. Now that I have finally figured out how to use the boards, I promise I will answer your answers! (And maybe I can figure out the Icons next!)
  2. leomonkey

    leomonkey Member

    This pain does not sound like it should be ignored. Like CFS, IBS is diagnosed through a process of elimination. A barium enema (with xray exam) was one test that was used that confirmed it in my case. It eliminated Chron's amongst other things. I hope your doctors have tested for other serious conditions prior to the IBS diagnosis.

    With my IBS, swelling (in the day I could swell from size 5 to size 9, I bought large clothing for myself!), problems with elimination, and toxicity were the main symptoms. There was also cramping that was painful. After eating, I could feel of flush of "fatigue" wash over me, and sometimes nausea.

    It is difficult to identify the location of a new pain quite frankly. Sometimes menstral/ovulation pain may be very similar to digestive pain. Over time, I can articulate the differences better but it is not an easy task!

    I found that Zelnorm was very, very helpful to me. It is a four month protocol. I did need to go back on a few times over a few years. It is intended to retrain the bowels. Based on my experience, it is worth trying. The difference is significant in my life.

    Prior to trying Zelnorm, I tracked my eating for a year. This allowed me to identify most of the foods (or even situations) that caused problems. I also tried an elimination diet. This uncovered some more foods, supplements and such that were more likely to cause grief.

    With IBS, leaky gut and toxicity can be a factor. When I was having better days, I would try a gentle cleanse to help clear out the toxins.

  3. marw

    marw New Member

    I really appreciate this info about this horrible pain....which it sounds like maybe really is IBS, according to what you all say. I do have Constipation, but I treat it by drinking prune juice twice a week. I was doing it every other day (which I thought worked better, but one GI doc told me not to do that so much). This really works well if it is taken on an empty stomach first thing in the a.m. followd by a tall glass of water. The thing is I have to wait about 2 hours then for the prune juice to work, and that is h-ll, because I am in so much pain (cannot take the pain meds...need a totally empty stomach for the prune juice). In spite of keeping the intestines as clean as I can, I still have the pain.

    I have never had diarrhea in my Life unless I had the flu or something, just the C. Prior to getting this pain, however, I always had the C. and always treated it with the prune juice so successfully that I only had to do it once a week, and also back then I never had this side pain, and also never had Fibro!

    Based on what you are saying, maybe I should stop demanding the tests. Maybe it really is IBS. I do have hemorrhoids also, and had a lot of blood this week. Because of the blood, I get scared. Maybe it is just the H. but I start wanting the colonoscopy to be sure. I had a CT scan, but I am allelrgic to Iodine, and even though I was thoroughly prepped for this (and could therefore have had the Iodine) at the last minute they refused to to the Iodine part. I feel like I haven't had the whole test unless I get the Iodine too, so I may try to have it done over at a different hospital.

    I did try the Zelnorm, twice in fact, because I wanted to be able to use it so badly, but I had such severe cramps from it that I just could not stand it.

    I am past the menopausal age, so it is not to do with that. I did rule out ovarian problems with my gynocologist. And it cannot be appendix because I would for sure be dead in all this long time.

    I have been to many GI docs for opinions on this, and they semm to disagree. Most willthink it is IBS, although the last said he thought the pain was from the surgery, and from the hernia before that. The hernia was inguinal and was exactly where the pain is in my gut. I thought surely it would stop after the surgery, but it did not. THe surgery itself now hurts also! And it has been hurting since I had it 9 months ago.

    Well, thanks for listening, and for your terrific advice. Hmmm....let me try an Icon here...
    [This Message was Edited on 02/06/2006]
  4. marw

    marw New Member

    Forgot to say that I am also nauseous every morning. Is this part of IBS? Cannot not eat or drink anything except water for about 2 hours. Usually, I am just running for the pain med, and then lying down until it works, and then I am O.K. enough to eat and start the day. (The Anxiety is also at its worst when I wake up in the a.m.)

    I have a catch 22 situation because the pain med is Vicodin which is not good for Constipation, but there is nothing else I can take .....I tried a lot of pain meds...OTC's are not strong enough anymore....and Morphine would probably have the same effect as the Vicodin. I once tried the Fentynal patch, but even the smallest dose was far too strong (and I ended up at the ER with an OD situation...and the Fentanyl was all I took that day). I wish I could find some kind of time-released pain med that would not have Constipation as a side effect. Well, you know what they say....if wishes were pennies.... (Gee, I didn't get the Icon to work...will try more later.)

    Thanks again!! You guys are super.

  5. leomonkey

    leomonkey Member

    Sorry I wasn't more helpful :)

    You are right with the Zelnorm... mind you I find I have a toxic reaction to most meds... even many supplements, so this was no surprise.

    It sounds like it is a no go for you but it did remind me that I started on a half pill (two is the dose) even though this was not suppose to work. I like you was very and still am constipated. I was able to build up tolerance enough, pass the D and cramping for it to be helpful.

    I do hope you find something soon!
  6. leomonkey

    leomonkey Member

    Yes, I lay down after my supplements in the am. It usually takes an hour for the naseau to pass.

    I see this as a digestive track issue. Anytime I am taking something orally, I know that I have TWO factors to consider. If I get a headache, my body as a whole sees it as toxic. The nausea usually means that my digestive system is having trouble.

    I think, in this way, the IBS complicates our treatment protocols because of the heightened sensitivity.
  7. marw

    marw New Member

    I'm so glad I saw this now. I did not know you could take half a Zel-Norm. I will discuss this with my doc tomorrow (today now). It sure sounds worth a try.

    Yes, I have a lot of trouble with suplements, also. Mostly I can't take them ecause they give me Migraine. It is just a trial and eror thing to find what I can take.

    It was a relief to hear that I'm not the only one who has that nauseau in the morning! I don't feel so alone. That part was bothering me, too.

    I'd better get to bed, or I will not sleep at all tonight, and sleep is one of my main problems! (Sigh!)

    Thanks again.
  8. leomonkey

    leomonkey Member

    You are probably sleeping, and even if you are up, don't feel a need to reply.

    I am not sure it is common practice but my doctor has been with me long enough to recognize my sensitivity with meds. Also, often a minute amount seemed to be effective for me even though, scientifically, it shouldn't!

    So, the makers of Zelnorm (and perhaps your doc), may feel this approach of starting with 1/2 a pill and working my way up to two pills slowly is not effective but it did work. Perhaps it can make a difference for you.

    Sleep tight :)
  9. nonnie1967

    nonnie1967 New Member

    but you still want to make sure that's what it is. You need to have inflammatory bowel disease ruled out by a gastroenterologist, as that can lead to colon cancer and all sorts of nasty problems. Can you get a referral from your primary care doc?

    I've had to have a colonoscopy, barium x-rays, abdominal x-rays, and all that stuff. It was nasty, but necessary for me. I even had bleeding at one point and didn't know what to think. They had to rule out the serious stuff. (Not that IBS isn't "serious" - it's just that it isn't generally fatal in the developed world.)

    Zelnorm is great for constipation-only IBS, but is not recommended for people who also suffer from diarrhea. I have both, and the very first time I took Zelnorm, I had the worst case of diarrhea and agonizing cramps I have ever had. (This started within 30 minutes of taking it.) I have never taken it again.

    I am currently on Bentyl (an anti-spasmodic drug) and Benefiber, as well as a high-fiber diet. The combination works better than anything I've tried before. Stress and flares still cause problems, though - as do the times when I don't follow the high-fiber diet. (It's hard to be disciplined all the time!)

    Best of luck to you as you get this all figured out. I know it isn't easy, but I hope you get a treatment protocol soon that works for you. :)

  10. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    It would be quicker to poll who w/ FM/CFS does NOT have it, it's that common to the disease.

  11. tandy

    tandy New Member

    I know many of us here have both~
    They acually DO go together alot. (there is a strong link)
    Mine is more often the diareah type. But sometimes I get constipated. Neither one is fun.

    I've had episodes before my DX where I'd almost black out due to the severe stomach pains and watery diareah.
    Very scarey!
    I can almost FEEL food going thru my system. It makes that much of a nuisance. The pain can get horrible!!

    sometimes I can't even eat (fear).
    Cause I know "what goes in,..must come out"
    There are times when all I eat is oatmeal,applesauce,or toast for 2-3 days. Just to settle things down.

    I lose weight during these episodes too.

    If I had to guess,..I'd say there are more of us with IBS than not.
    You surely need a colonoscopy done tho to make sure.
    But it sounds like it to me.
    I had my 1st colon scope at 34 yrs old.
    anyone with colon troubles should have one done in my opinion.
    Best of luck
    :) Tandy
  12. kch64

    kch64 New Member

    I have the combination of diarreah and constipation. Probiotics have helped me somewhat. But around time for my menstrual cycle, hormone fluctuations aggravate it.

    caffeine (which I'm fond of) seems to make it worse too.

    I hope you feel better soon. It can be miserable.

    the Two rheumatologists I've gone too, say that FM/CFS is the same illness. Who knows. We're all haywire (smile).

  13. BronzeWomn

    BronzeWomn New Member

    Hi marw, didnt u kow that ibs and fibro are lst cousin one works with the other..the drs haven't found this out yet but, the ibs and fibo patience have. Some of us dont have it together,,but, i do. I just came out from takin test from this awful pain in the lower right hand side and my dr can't find crap. The gave me a ultra sound and wanted to give me a vaginal ultrasound i have never heard of it..i told u arent giving me that when i seen what they would put up me..lOL. But, the dr said i have 2 small cysts on the right side and the pain is probably from the scar tissue from the previous surgeries i have had..{9}..I can agreend with that and also from prolly being consitapated alot. Things get traped in us..especilly pizza and heavy foods. So I try to stay regular with bowel habits of goin to the restroom everyday. Zelmon didnt work for me..only give me bad cramps and pian and i do the best i can do..hope this helps. Be blessed.
  14. laura81655

    laura81655 New Member

    Margaret, I use to get that right side pain quite often and always thought it was my appendix. I had chronic D. for a year up to last June/05. I started taking a whole food Probiotic vitamin and it helped a lot. I still had problems with certain foods such as garlic, raw onions.

    I added low dose Cortisol since Nov. 05 and I no longer have abdominal pain or IBS. I can eat raw onions and most anything really as long as I don't take any products such as Ibuprophen.

    I hope this helps.

  15. tandy

    tandy New Member

    I posted above already,..but thought of something to add on for all with IBS.
    I've read a few times that the supplement 5HTP helps with IBS symptoms and with sleep issues.
    Anyone know anything more on this?

    This might help some of us.
  16. tandy

    tandy New Member

    back up top one time.

    Hoping for an answer on 5htp
  17. redchud

    redchud New Member

    I have suffered for 15 yrs and it has not got better have seen specialists but there is nothing they can do I have medication I take daily suffer terrible pain swollen stomach, get back ache feel sick i get C AND D so i can win

    Take Care
  18. lease79

    lease79 New Member

    I also get that awful pain in the right side, feel sure some days I have appendicitis!!!it is usually worse with me if I stand for to long!!!
    Oooh this is exactly what I get. I have thought that it was appendicitis more than once, & it's deffinately not ovulation/menstrual pain as it's different.
    This radiates from my lower right of my abdomen into my hip, into my butt. Somtimes it burns, sometimes it stabs & sometimes it itches!!!
    It goes away & then it comes back again. Sometimes it's been that bad that I've gone to the A&E seriously thinking that it was appendicitis.
    I have constipation type IBS, but it can alternate occasionally when I get really backed up to diahorrea :(
    Lovely stuff. Interesting that others get it like this too.

  19. marw

    marw New Member

    HI Everybody,

    Wow, what a lot of replies! I am learning so much. I am glad for the answers but sorry so many of you have it. I'm also sorry I didn't get back to this thread sooner. I could not get on last night.

    Where to start? First, I had the last Colonoscopy a year and a half ago, and this is why the several GI docs I've been to lately have refused to do another one. (THey are afraid Medicare won't pay, I think.) Sooo....THANK YOU MUCH for the encouragement to push on for another one anyway. I certainly will, because I have had BLOOD lately....once very bad (as in toilet full...sorry to sound gross these things are what they are, I guess.) Most likely is is the hemorrhoids, but I really, really want to be sure!!!

    About DIVERTICULITIS....YES I have had that, too. ONly mine may have been the Diverticulosis. I get the 2 confused, but mine was the lesser one that is least dangerous. STill it was painful (understood it to be a pouch in the intestine where food got trapped, and I was told not to eat seeds or too much fiber). What I do not understand is how I could NOT HAVE it now. For years I took med called Levsin (generic is Hyocyamine) which is a muscle smoother for the inner muscles, I think. ANd that worked prety well. On that last Colonoscopy I had, I was told I no longer had the diverticulitis OR the polyps. I used to have polyps every time, and had those Colonoscopies every 2 years, and got the polylps removed. THey were always benign. This is why I think that DOCTOR COULD HAVE BEEN WRONG. Other docs here go "Oh, he is so good, he is not wrong." I needed your encourage to pursue this, and I thank you again for it. I definitely will keep after this. I will find still another GI doc.

    Regarding surgery in that area--the R. low side....yes, I have had Hernia surgery (inguinal) 9 months ago, and have a lot of scar tissue there. THere are possible trapped nerves there. I have been having nerve blocks for this. I had the pain in the R. side however before the hernia surgery.

    Now I just realized I probably said a lot of this before, but I do sometimes have memory problems (and had a lot of "fog" lately) so hpe you forgive my repetitions.

    One more thing: How do I bump? I want to bump this up to the top. Do I just type bump?

    ANd accept my appologies for not answering everyone individually. I may go back and try to do that, but wanted to get this answered now.

    You guys are wonderful! (clapping hands)


  20. marw

    marw New Member

    I do take Bentyl but it doesn't seem to do anything. Neither does the Levsin (Hyocyomine) that used to take for the Diverticulosis. This seems to me to point to something else. I'm definitely having more tests. I think the GI doc who said, yes, you do do have IBS, but it's not the only source of the pain may be right. (Of cocurse he was one who has refused to do another Colonoscopy.)

    Will keep you updated.

    P.S. I am putting dots by the icon but it doesn't show up. Is there another step? Thanks.