Can an MRI see the terminal ileum

[Jerman]

Hello everyone, I have had a really rough day today. my younger sons are here for the weekend and i dont want them to worry so i try to not show that i am in pain. oh my god my side hurts today!!!! I have woken up each day this week with a pain level of 7 out of ten. today i hit number9 a little too often. i am even having trouble with my one flightof stairs due to knee n joint pain. i am so damn sick of hurting like this, i dont want to go into the hospital as i just got the recent bill...no i just hate the damned place too!! i called the hosp in boston and tried to get a game plan for the next test, etc to try to get this under control. he told me i would be having yet another colonoscopy so that the doc can see for "himself" what it looks like in their. he also said that woulldnt be till early july. i called my new gp friday to get a refill onthe pain meds and was defintely judged by the staff as medseeking!!!!! uh yeah, i do want the damn meds,but not for recreation for gods sakes it is because i just hurt like hell. this pain is horrible!!! i have no energy and ache like hell!!!

ok now help me hear guys n gals, should i advocate for a different test like an mri to see if the can better identify stuff in the termian ileum area?

how can i get the docs to see that i need themto give me the pain meds if i am to be able to function with this level of pain? i know that i need to b careful with them but truth be told i'd rather risk addiction than deal with the unmasked pain!!:ymad: :ymad: :ymad: :ymad: :ymad:

 

[SpoonNinja]

sorry to hear about all that and good luck with the pain med thing. my dr doesnt believe in narcotics so no matter how much pain im in unless i go to the hospital i get no relief, i missed 124 days of school this year because of the stress causing flairs and my dr would give me ne pain meds so i couldnt even stand up straight it hurt so bad so i couldnt go to school. and as for tests maybe the barium thing, where you drink it and it lights up your intestines so they can see where its messed up at. im not sure what it is called tho, but im sure someone on here does. ive had it done a few times and its not fun but its not horrible eather and if it helps then im willing to do it. but hey if you figure out how to get your dr to give you pain meds l et me know lol. good luck with everything!!

 

[forum contributor]

Hi, Jerman.
I'm so sorry you're in such pain! I believe in being a self-advocate AND that pain is always an indication that something is wrong (but yet, most of us are usually in at least some level of pain). I would push for more, but that's me.
Finally, someone else from MA!!

 

[Jerman]

Thanks for the good wishes ladies, it is much appreciated. I have had a lot of tests like an angiogram (supposed to take cross section pics of torso), cat scan, and lots of blood work. i have had docs tell me that they do not see the physical manifestation of why i am having so much pain. the first doc i saw actually told me that joint pain is not a part of crohn's.

Spoon ninga- isnt it something that if the doc doesnt "believe in pain meds" ( or can't ahem 'grow a pair' we are the one's who suffer.

Santos- you are correct in that i am usually in some level of pain at all times, but it is usually a 4 or a 5. today a 9 not doing well, going to see doc at 2:15pm. what area of mass are you in? I am in the rochester/marion area. Its really quiet and pretty here.

 

[SpoonNinja]

ha yea my dr really needs to "grow a pair" im accually looking to change but i have medicade so i have a limited choice. but im doing research on drs in my area and also checking on the ccfa website. good luck with your appt!

 

[forum contributor]

Let us know how your appt goes!
Oh, I'm in Taunton... it's not really quiet and pretty here!
BUT I'm moving soon, thankfully

 

[sandylou]

HI Jeremy!
I've had Crohn's for 18 years. Joint Pain is definately a part of Crohn's!!!!!
I had my left knee rebuilt, Crohn's had been chewing on it for 2 years. The bone doctor said it was consistant with Crohn's disease. Crohn's also can take its toll on my eyes.
I know the frustration of wanting pain relief. I'm tired of being veiwed as a medjunkie. I'm considering planting my own medicinal pain relief solution. I feel your pain Jeremy!!! But, always remember, the squeaky wheel gets the grease! Don't give up, you have the right to live pain free. Crohn's sucks big time!!!!!!!

 

[CD68]

ok now help me hear guys n gals, should i advocate for a different test like an mri to see if the can better identify stuff in the termian ileum area?

Why not capsule endoscopy?

When my doc does a colonoscopy he can normally go for about four inches into the small intestine and take a peek. I got a copy of a pic in the terminal ileum to to prove it . I will add that my doc is at university hospital and does all sorts of exotic procedures that other GIs don't do so maybe a colonoscopy up the terminal illeum isn't that common...or maybe it is. I had a different doc for my first one and he barely made it to the ascending colon. Between the colonoscopy and the capsule cam they have pics of my guts from stem to stern. I don't know that an MRI or a CT scan even with contstrast shows nearly enough detail like actual photographs from the inside do.

 

[CD68]

the first doc i saw actually told me that joint pain is not a part of crohn's.

WTF? :ylol2:

I had a (student) doc who knew I was diagnosed with Crohn's tell me my fatigue and joint pain must be from fibromyalgia. Nobody followed up on that though. She took it upon herself to explain the prep for a colonoscopy and freaked when I asked her if whiskey counted as clear liquid.

 

[Mazen]

I've had 2 colonoscopies and they never could reach my terminal ileum due to narrowing. So my doctor usually orders a CT scan with contrast to see what is going on in there. But I've read recently that cT scans increase radiation exposure, so maybe an MRI is a better option. But I don't know if it's as effective!!

Oh, also I asked my doc about capsule indoscopy, but he said it is not for me since I have a narrowed terminal ileum and he is afraid it may be stuck there !!!

 

[Jerman]

update Bad Day

Why not capsule endoscopy?

When my doc does a colonoscopy he can normally go for about four inches into the small intestine and take a peek. I got a copy of a pic in the terminal ileum to to prove it . I will add that my doc is at university hospital and does all sorts of exotic procedures that other GIs don't do so maybe a colonoscopy up the terminal illeum isn't that common...or maybe it is. I had a different doc for my first one and he barely made it to the ascending colon. Between the colonoscopy and the capsule cam they have pics of my guts from stem to stern. I don't know that an MRI or a CT scan even with contstrast shows nearly enough detail like actual photographs from the inside do.

The Docs were not able to get any further than the beginning of the ileum as it was to inflammed and narrow- each of the times I have had a colonoscopy. One of my Docs is reluctant to do the pill endoscopy as he fears it may get stuck. The Doc in Boston will not be back until July. He wants to do yet another colonoscopy - so he can see for himself- on a rational level i understand this but .....I have had so many damned scopes in their that any time i bend to pick something up I can hear wind whistle through me ars!:lol:

Update- the appointment yesterday was a bit wierd, no more pain meds as he didnt feel they were working. He did prescribe Bentyl 30mg tid but I feel kinda weird on it today. vision a little funky and terrible leg pain behind my knees, along with the everpresent pain in the right side under my ribs. I actually have been having my wonderful wife come along with me because i have trouble with focusing and remembering due to the constant pain level. :ymad: I know that many of the folks here have gone through so much more and have more to complain about. I have truly never had a pain before that i couldnt block out to some extent. I am no stranger to pain either, have played football and was an amateur boxer in the years ago. I have worked with behaviorally challenged people in the human services field and have always been able to physically manage the "boo boos" I'd get by working to keep someone safe.

However, this is really a wicked pain!!! none of the docs are convinced that my current challenge is due to the crohns as there is no physical manifestation of the disease in the cat scans, cscopes, or any of the others that i am forgetting.

I am not sure what to do at this point. I love my wife and kids and would never hurt them by hurting myself. I am not at risk for that. I realize that means that I need to be able to just accept that i have this rottenass disease. So I have one more question for you cyperpoops... is this as good as it gets?

 

[RafHam]

Just a quick note on the pillcam. I've been told that there is a dummy pill available which dissolves if it gets lodged somewhere. You would take this first to see if it's safe to take the pill cam.

 

[SpoonNinja]

no you should be able to get it under control and go into remission, if the meds you are on arent enugh maybe you should talk about stronger drugs, like remicade maybe. im nnot sure what is all out there but im in pretty much the same boat. i have a lot of pain most of the time non stop and im on pentasa and prednisone but i really dont think its doing what it should soive been researching other drugs for crohns to help put me into remission. when i came along remicade it sounded like it would be good for mr but ive not been able to talk to my dr yet. so maybe you should do some research on it, i think thhere is even a couple threads on here about it. it may be what can help you, so its worth a check. good luck with everything hope you feel better soon!

 

[Jerman]

HI Jeremy!
I've had Crohn's for 18 years. Joint Pain is definately a part of Crohn's!!!!!
I had my left knee rebuilt, Crohn's had been chewing on it for 2 years. The bone doctor said it was consistent with Crohn's disease. Crohn's also can take its toll on my eyes.


I had never heard of this as a part of this disease before, I have never had trouble with my eyes but seem to now. I have trouble focusing as things up close are more fuzzy than previously. On three of my several hospital admissions, i actaully had double and triple vision, attributed it to pain. Thanks

 

[Jerman]

Hey spoon ninja , doc dc'd the vicodin for pain (wasnt helping much anyway), and prescribed bentyl 30 mg 3x per day. Does anyone know the therapeutic dosage for this med? I do have some relief from stomach pain today running like a 5 out of ten.

 

[Lisa5326]

I was prescribed 20mg three times a day, but take as needed, if that helps? I think it was a standard dose given to me by a general practitioner to see if it would help my pain. It didn't help all that much for me, but I didn't take it regularly.

 

[SpoonNinja]

well im glad your feeling a bit better, ive never heard of bentyl b4, is it a narcotic like vicodin? if not i may have to see if my dr will give it to me when im in pain, you will have to tell me if it works well or not, but if your feeling better it must be good for something! ^-^

 

[Jerman]

that is freaking hsyterical good for you!!

 

[Jerman]

I was prescribed 20mg three times a day, but take as needed, if that helps? I think it was a standard dose given to me by a general practitioner to see if it would help my pain. It didn't help all that much for me, but I didn't take it regularly.

Thanks for the feedback Lisa. How long have you had C and how many days (of each week) are you in pain?

 

[Jerman]

well im glad your feeling a bit better, ive never heard of bentyl b4, is it a narcotic like vicodin? if not i may have to see if my dr will give it to me when im in pain, you will have to tell me if it works well or not, but if your feeling better it must be good for something! ^-^

Its not a narcotic, but is a stomach sedative supposed to help with pain/spasms. I will keep u posted.

 

[Lisa5326]

I haven't been diagnosed with C yet--I posted my story today. I have pain every day of the week, some days are worse than others, but i haven't been over a 5 out of 10 in about a month.

 

[SpoonNinja]

cool i will have to ask about it sounds l ike it would help.