Hello

Hi,
Im deb, age 42 and have had crohns since the age of 20. Had a bowel resection in 2005, and all has been well until now. Suffering from chronic joint pain, and shoulder blade area, as well as groin pain. had scan on gall bladder and liver, but results fine. Bloods come back as fine, but am still unwell, lost a stone in 2 weeks. Thought someone may have some pointers, cos getting anxious and desperate now.

Hi Deb, welcome to the forum, and sorry im of no help to you.

Hi Debs and welcome So sorry to hear you are having problems again. When you say scan, what kind was it? Just wondering, cos with a Crohn's history, I would've thought they might do some sort of scan of the bowel. Did they say why they were doing liver and gall bladder?

Hi Helen,
thanks for getting back to me. Because of the pain i was in with back pain, and pain under my right side of ribs the doctor suspected problems with my gall bladder. I had an ultra sound scan, which showed nothing. My bloods are fine as well. Since my resection i have been so lucky, and havent had any problems in 7 years! The only medication i take is Colestyramine and B12 jabs. My joints are so sore, and i have no appetite, and my tummy is uncomfortable.
All these things are so different from the symptoms i used to suffer from ie stomach cramps, mouth ulcers, and living in the loo!
I suppose because i have been so well for so long i am finding it tough to deal with this again. Im awaiting an MR scan, but its hard trying to look after my girls and not going to work.

Welocme to the forum. Hopefully the MRI will show something to work with. In the mean time have you thought about diet to help with your stomach (see what food/drink causes problems etc).

This forum may help with the sore joints http://www.crohnsforum.com/forumdisplay.php?f=82

Hi deb 123 - I understand what its like bringing up kids and suffering also to have a period of remmission then for it all to come back 2with a vengeance arrgghh! You get so used to the "well" you that it comes as a major downer wen things start to go bad again. I,m at the feeling sorry for myself stage , but willing to communicate this time instead of keeping it all to myself - progress for me. hope things get better for you and keep us posted x

Hello, this is my first response, feels good... Well today I was doing some research about adhesion's, I will be having surgery soon and my surgeon voiced some concern about it. From what I read, watched, adhesion's from past surgeries can cause future problems as well as pain. I too had surgery eons ago, and here I am 18 years later back to square one. I have a narrowing that is almost closed where they cut the Chron's out then. Test also show active chron's in that area. I have major tummy swelling, and severe pain under right rib, as well as a hernia that was left safe to not fix from last surgery. My scar is about 2 inches wide. When diagnosed I only weight 70lbs soak and wet. My scar and hernia hurt too. My ankle's hurt. My gallbladder test come out okay too, but the surgeon is taking that out too. deb, I tell you what, I have been in some severe pain this last year. In and out ER. Test after test. I finally found a GI that agrees the meds are not working for me, I did barium MRI thing and it show the narrowing severely, as well as the colonoscopy he did showed the blockage. So maybe another colonoscopy will show. I would try anther doctor if you can. Get more opinions too. I have alot of the same symptoms you do. Good luck hun

Hi,

thanks for your reply, you sound as though you have been through the mill as well!!
Im still waiting for MR scan, and appointment with Rhematologist - NHS is slow process in England, even though my doctor has requested it as urgent. The Gastro doctor will not perscribe anything incase i have an abscess or cyst.
He wants to be able to see everything.

Some days i feel ok, but if i go out to do the food shop i get woozy and can feel the energy drain from me - its so frustrating!!
Ive never experienced the joint and muscle pain before, lucky me.

I'll have a look about adhesions, thanks for the pointer. Hope you are feeling well today.

Hi there and welcome! I'm so sorry to hear you're having troubles again

I don't think the issue would be adhesions as it wouldn't take 7 years after surgery for such troubles to start.

It sounds like your doctors have you headed in the right direction with all the tests to see what's going on, it's just frustrating that you have to wait so long

The only other thing I can think of is getting your vitamin D levels tested. People with Crohn's Disease, especially if you've had a resection, are commonly deficient and that can contribute to bone and joint pain.

I wish you well!

Well since my last initial post i am finally getting better.Went to AE because i collapsed, never fainted in my life! They thought i had Lymes disease, and are doing bloods for that and have been perscribed Doxycycline.
Not sure if they have got it right but am back to eating small amounts cos i get stitch pain in right side below ribcage still, wonder if i have some sort of blockage as it makes me feel as if i need to go to the loo or be sick. Joint pain is improving to.

I will probably be back at work before i get diagnosis!
I will definitely ask for the Vitamin D blood test as well.

Ive just had alook at the Vitamin D article and doubt i am deficient as i have just had 3 months uv treatment for my psoriasis.

How are you deb123? Have you received your results?

Hi Tamala,

no i havent had any results!! I think that must be a good thing though, cos if it was serious i hope that they would let me know?
Im waiting for a MRI scan, as Gastro doc thinks i may have a cyst. Nurse called and said i am on waiting list max 2 weeks.
I actually feel better, still get pain under ribs but not like it was, so hopefully it was a flair that has healed itself.
I did go on a liquid diet so maybe that helped my gut heal.

Thanks for your support, it really does help to confide in people who have the same experiences and understanding

Thanks for the update Deb. I'm glad you're feeling a bit better

Sometimes trusting the office will call you with the results is such a helpless feeling, but i do agree normaly if something is wrong a flag should go up, to inform patient. 2 weeks is not too bad. Best wishes.

I hade severe flair under right rib las night. Had to take 2 tramadol. Thank Goodness surgery is soon.

And yes rambling on this forum off and on throughout my flair was a much better feeling, than feeling i was the only person in pain on the planet.

Hello me again,

I have been back at work a week now. Ive finished my antibiotics that they gave me to treat suspected Lymes disease, and guess what?............starting to feel poorly again!

What the hell can it be? My legs, and upper back kill me, i have episodes of tingling gripes in my feet and hands I am constipated, with nasty cramps, so i let up a bit on my Questran, and then i have urgent diarrhea. I have a sore throat and a really nasty taste in my mouth.

No MRI scan appointment yet!

Fingers crossed that it will be a quiet weekend, as everyone is on close down to celebrate the Jubilee weekend.

When is your surgery Tamala?

Hi Deb,

That tingling in your feet and hands has me concerned. How often do you get vitamin b12 injections? When was the last time you had your levels tested and what was the specific level?

Hi David,

I had my last shot of B12 about a month ago. I have them every 3 months.

Also had blood test done at beginning of year, they didnt tell me specific levels, just that that i should carry on as normal.

Do you think there could be an antibiotic link - i started to get better slowly each day after taking them?

Im totally confused as my last blood report that came back said that my blood levels were all within normal range, but my Renal was slightly low, but my Dr said he wasn't concerned about the result, it was better to be low than high.

I have to see Rhemo Dr on the 21st June.
I just wish i knew for sure if it is a Crohns issue or something else.

Hi Deb,

Every 3 months for B12 is the low end of the totem pole when it comes to B12 supplementation for those requiring injections. Is it possible for you to find out what your B12 level was or get it retested? There's a good chance you're deficient which is leading to the tingling.

Yes, various antibiotics can help with Crohn's Disease in some cases (or make it much worse). The most commonly prescribed are Cipro and Flagyl. It's possible that the antibiotic was indeed helping you and I'd let your doctor know about that. It's also possible that you have small intestinal bacterial overgrowth and it was helping with that.

Do you have the specific information for the renal test? It's not something I'm familiar with but would be happy to research for you or others might know.

Thanks for your advice David. I'll book to see my GP on Wednesday, and ask all the relevant questions.

The antibiotics they perscribed for suspected Lymes disease was Doxycycline. I can feel my body getting weaker again each day, but i'm still trying to do all the things i would normally do, but its a struggle!

I try to adopt the mind over matter approach with my Crohns and have almost been in denial with it for most of my life. Its silly but when i'm well i don't acknowlege to myself that i have it, i suppose my coping mechanism is ignore it and it will go away.

Deb