Need advice ...please

[aurora]

Hello everyone,

I am 39, female and i am currently trying to get diagnosed..This is my story short version . I was diagnosed with fibromyalgia in 2004. From 2006 a couple of times a year i get a horrendous pain in my lower back from my coccyx bone up to midway if my spine. I feel something is squeezing on my spine i also get rectal pressure and pain in that area at the same time. I have bad pain in my stomach always right side and low..sometimes throbbing and sometimes quite sharp it would stop you in your tracks. I get diarrhea 4/5 times a week always in the mornings no blood. I have had several blood tests over the years red count are always normal, white blood count are always elevated. I had a lumbar spine mri lately and that was normal. These episodes are occuring more and lasting longer.. for the past 5 wks i have felt very unwell. I feel my doctor isnt listening and wants to put everything back in the fibro box and i really believe that the way i feel is nothing to do with fibro..any help or advice i would really appreciate...Thank you

 

[Lady Organic]

elimination diet can help in fibromyalgia: In the below study, gluten or gluten and dairies remouval reduced the symptoms: Out of 20 patients, 15 went into remission:

http://link.springer.com/article/10.1007/s00296-014-2990-6/fulltext.html

https://www.ncbi.nlm.nih.gov/pubmed/24728027

 

[aurora]

I believe i also have Crohn's , i am seeing different doctor, same practice in the morning. How do i convince him that i need to be tested for this..i have left surgery so many times feeling like a hypochondriac! I know this isn't the Fibro..Is back pain common for you all? Meant to say also before i started suffering this way had a pilonidal sinus..in my lumbar mri it said at end of report..(please note a different scanning protocol would be used for the discharging anorectal fistula/sinus) i since had another mri which focused on the anus..report normal..anus normal, no evidence of fistula..confused!!

 

[Jennifer]

Hi aurora and welcome to the forum!

If the MRIs aren't showing anything wrong with your back then it might be best to start checking your digestive tract (pressure in your abdomen can cause back pain and pain in your abdomen can radiate towards your back. Arthritis is also common). Back pain is very common with IBD and many members have mentioned having similar symptoms.

You'll need a Gastroenterologist (GI) to help make a diagnosis or at least rule out IBD. Once you see a GI have them do a colonoscopy and upper endoscopy with biopsies to start out with (if you do have a fistula then they will likely see it during the scope). After that you may want to do other imaging tests like an MRI of your whole abdomen, a CT scan, and MRE, small bowel follow through, barium enema, and/or a pill cam.

Did you have all of your vitamin and mineral levels tested when you had blood work done? If not then it would be a good idea to see if you're low or deficient in anything which is also common with IBD.

What kind of doctor are you seeing tomorrow? Keep us posted on how the appointment goes.

 

[Lady Organic]

true spondyloarthritis can occur in crohns and UC in a minority of patients. Its not common to most of us.
it seems it occurs in fibro as well, as written in the study : ''Five patients had features of undifferentiated spondyloarthritis, and one patient had psoriatic arthritis''
spondyloarthritis means arthritis of the vertebrea including spine and sacro-iliac joint.

I guess the best way for you is to get a referral with a GI who can ask for complete blood test, including CRP and Sed rate which are markers of inflammatory condition in the body and ask for fecal calprotectine test, its a stool test.

 

[aurora]

Hi Jennifer...thank you for the welcome and the advice. My appointment is with family GP..i am still awake unable to sleep with pain and worry. No i haven't had vitamin levels checked in years. The last time i did, i know my vitamin b was low because i remember having to get injections of it for a few wks. I will ask him to do a full bloodwork in the morning. I just hope he listens

 

[Jennifer]

"Arthritis, or inflammation of the joints, is the most common extraintestinal complication of IBD. It may affect as many as 25% of people with Crohn’s disease or ulcerative colitis."
http://www.ccfa.org/resources/arthritis.html

Up to 25% is pretty common.

 

[aurora]

Better try get some sleep i have to be up in four hours..ill let you know how i get on ...Thank you, to you both

 

[aurora]

Ok so i had appointment this morning with a different GP same practice.. Feel a bit relieved he did actually listen to me. I explained all my symptoms and he agreed the other doctor was going down the wrong route with me (she wanted to refer me back to my rheumatologist) his opinion was that my problems are coming from by bowel..(he mentioned Crohn's or Diverticulitis) Hallelujah!!! Problem is a long wait here to see a specialist and to have a colonoscopy so in the meantime he prescribed Colofac 135mg (Mebeverine) and aked me to come back to see him in three weeks and to also keep a food diary... Has anyone heard of this medication and do you find it good..also in your opinion is there any foods i should avoid..i am not aware of any specific food apart from onions, chilli or fried food that has an effect on me. I suppose keeping a food diary will help there! I would be delighted to hear any tips and if i ever post in the wrong place plz let me know..so new to all this :runaway:

 

[Jennifer]

Colofac is used to treat IBS by reducing spasms in your colon. You can read more about it here: http://xpil.medicines.org.uk/ViewPil.aspx?DocID=2531 It's not a treatment for IBD so it may help a little but it might do nothing at all. I've never taken anything like it before so I don't have any experience to share. Let us know if it helps you at all.

As for diet I stick to the low residue diet during a flare. You can make just about anything low residue. Other common triggers can be caffeine, smoking (unless you have Ulcerative Colitis), artificial sweeteners (that you may find in diet drinks etc), high fiber foods etc.

Glad you found a doctor who's willing to listen to you. Hopefully you'll be able to see a GI soon and get scopes done. In the US it can take 3-6 months to get in to see a specialist but many people can get in sooner. Always ask to be placed on the cancellation list so if someone cancels you can snag their appointment. Keep us posted.

 

[aurora]

You have been very helpful Jennifer. There is a years wait here for a GI..cutbacks!! Thanks for posting those links, i will have a read. I'll give the meds a go i am just relieved that up to now my other doctor wouldnt even consider that it could be a bowel issue. One other quick question for the ladies i have noticed a connection between having flares and having a period. (it seems to trigger it) but since this flare started my period has stopped completely (last one early Aug) this is highly unusual for me as in it has never happened before. Several negative pregnancy test so i know its not that!!

 

[Jennifer]

Wow, that's a HUGE wait. Be sure to get on their cancellation list and go to the hospital in the meantime if things get really bad. Sometimes frequent trips to the hospital can get you a sooner appointment no matter what country you're in. Always inform them that you went to the hospital and have your hospital records sent there (even if you haven't seen the GI for the first time yet).

Many women on the forum have mentioned irregular periods and even a cessation of their period (the cessation is usually caused by weight loss, have you experienced weight loss recently?). Studies have shown that irregular periods and an increase in IBD symptoms are common with women who have IBD.

"Previous studies have revealed that GI symptoms become more prominent in IBD patients during menstrual periods, probably due to changing levels of prostaglandins. The exact mechanisms underlying the fluctuation in symptoms during the menstrual cycle in relation to ovarian hormones currently remain unclear. Chang et al.5 reported that 40% of female IBD patients experienced fluctuations in symptoms during menstruation."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572320/

 

[Lady Organic]

im glad you found a doctor who is more open to discussion.

regarding periods, Its true women may experience more bowel movements during that time. I have always noticed the difference. I always thought it was the movements (contractions) of the uterus that would trigger the colon into moving as well, like a mechanical issue. my non-ibd friend gets that too. the hormones hypothesis is interesting too.
I was once in amhenorrea for over a year when I stopped the contraceptive pill which I had taken for over 13 years. pill withdrawal?, purinethol? CD,? still a mystery. well ,a week after checking up with ultrasound, my periods came back! it appeared I had a lot unevacuated follicules around my ovaries. The radiologist thought it was the years on purinethol which may have caused that...

 

[dgiouz]

Hi,
sorry to hear about all these problems, my diagnosis was almost instantaneous. When I first got diagnosed I had bloody, liquid stools and severe abdominal pain. One colonoscopy later and I officially had crohns...

The only thing I've noticed with my period is when I was in a relapse, I lost a lot of blood in my stools and i missed my period for a whole month. I was also low in iron, like, almost blood transplant low. So i guess it's only normal my body reacts in a way to try to keep my blood inside my body.

But if you think you might have crohns I think the only real way to know for sure is a colonoscopy and endoscopy (going in from the mouth) super uncomfortable but has to be done.

hope everything works out!

 

[Jennifer]

colonoscopy and endoscopy (going in from the mouth) super uncomfortable but has to be done.

Don't tell me you were awake for those dgiouz. Most people get at least some sort of twilight sedation so they don't remember the procedure unless it's something you want to be awake for. While it's interesting to watch, it's very unpleasant feeling and if a section is too painful for you to handle it, they will abort the procedure and you'll have to wait to have the test done again later when you're sedated.

 

[dgiouz]

Don't tell me you were awake for those dgiouz. Most people get at least some sort of twilight sedation so they don't remember the procedure unless it's something you want to be awake for. While it's interesting to watch, it's very unpleasant feeling and if a section is too painful for you to handle it, they will abort the procedure and you'll have to wait to have the test done again later when you're sedated.

the upper endoscopy i was fully awake, they just froze the back of my throat so stop my gagging reflex. The spray tastes disgusting.

as for the colonoscopy I was half asleep, I would wake up at times, watch the scope, fall back asleep, wake up again... but I wasn't in pain, they used the smallest scope for me, I think the children's one even after 18..