Have pain and no active Crohn's

[long time crohnie]

Hi
Im new to this forum and have been reading on and off for the past few years but never got involved. I have learned a lot from my fellow "crohnies" from these discussions so I hope I can get a little more. I was diagnosed w crohn's at 20, I am now 44yr old female. I have had 2 bowel resections, ilium removed, several rectal fistula surgeries, gallbladder removal and dx w chronic pain syndrome. Most of my surgeries from crohns occurred in my mid to late 20's. had my gallbladder removed about 3 yrs ago w the hopes of the chronic pain to subside but to no avail. I have been on and off narcotics for years and went off again this past june (dilaudid and fentnyl patch) and used subutex for w drawl. As i was weaning off the subutex i had major diarehha and cramping. Was told this was normal. Recently i have been experiencing severe pain in my mid and lower gut along w severe yellow diarehea. Had an endo and colonoscopy with findings of no active crohns. On dicyclomine and lomotil, neither of which is helping. Any ideas on how to get back in to a productive life?

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear you are still struggling symptoms Just to confirm the docs have checked the entire GI tract and done biopsies and cannot find any evidence of active disease? With the two resections how much bowel was removed? Is there any possibility of short bowel syndrome? Other than the pain meds what have you been on for the crohn's and are you still on something now?

AB
xx

 

[long time crohnie]

thanks for the info re Short bowel syndrome. I have never heard of that. I have been on sooo many different meds I couldn't name them all! Currently I use azathioprine, lomotil for D, and donnatol. I updated my signature to include my medications and hx of how much bowel removed etc. Had to go up to the ER today for fluids and a pain shot. Hate having to do that but really needed a break! Found my potassium was low but all blood work fine. I also give myself a B12 shot monthly.

 

[afidz]

Hello! I lived in Waukesha for a little while when I was 19, beautiful town! Anyway this is just a shot in the dark, but its an idea. I have had several surgeries in my abdomen as well, and I get phantom pains that come out of no where and completely dehabilitating (sp?) My doctor found out that I have mass amounts of scar tissue from all the surgeries and thats whats causing the pain. I don't know if the diarrhea would have anything to do with it, but its worth consideration.

 

[David]

Hi there and welcome to the community! A couple things:

1. A colonoscopy and endoscopy don't see everywhere. There's an area that hasn't been viewed that may have active disease. I'd ask your doctor if they think an MRE, CTE, or capsule endoscopy might be in your best interest.

2. As I read your post, my thought was, "I bet some of her symptoms and pain are due to magnesium deficiency". Sure enough, you mention you're low in potassium. Magnesium deficiency often leads to potassium deficiency but they just treat the potassium deficiency instead of the underlying cause. I strongly suggest you ask for your magnesium levels to be tested as I'd bet good money you're deficient and it's causing some of your symptoms.

I wish you well.

 

[crohns0249]

I was diagnosed this past february with CD, and have spent several weeks of each month since then in the hospital. I have had 2 colonoscopies and as is typical an incredible amount of blood work to see if my crohn's was active. After both colonoscopies and all the blood work along with other tests (MRIs, etc.) all came back clear to the human eye. All my numbers were fine. I literally have no markers that indicate inflammation but every time they do biopsies I am told my crohn's is extremely active. I would assume they have done biopsies, but if that's not the case, I would definitely bring it up.

 

[long time crohnie]

Thanks for all the info!! I will surely ask my doc re those tests! Haven't heard back from doc re biopsy results of last colon/endo and don't see him till Thursday(which feels like an eternity). I get to do a 72hr stool collection over the weekend(yuck) and was told to stop using anti Ds!! I can't sleep or I loose it im my sleep!! I wish i could just go into the hospital and have all these tests done and receive meds to help symptoms! I hate having my family see me like this. They are so strong and have but up with this disease right along with me.

 

[long time crohnie]

What does MRE & CTE stand for? Ive had a CAT scan and showed nothing related to pain. I had a capsule swallow 2 yrs ago and found nothing. I truly believe my doc thinks this is all due to lack of narcotics but I have been off them since June and off subutex since Sept. I don't recall being this sick since I was in my 20s, but I don't feel they are listening much. re magnesium deficiency, your right the symptoms do look right. Funny when you look at the foods that have it are all foods that agrivate the gut

 

[David]

Magnetic Resonance Enterography and Computed Tomography Enterography with the latter basically being a CT scan but specialized. If you click on the automated links in your post above this one, you can read about them in our wiki.

 

[afidz]

who is your GI out of curiousity? I was diagnosed in Waukesha so I was just wondering