Back to a Crohn's Diagnosis. Severe pain.

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Quesadilla
Regular Member


Date Joined Nov 2007
Total Posts : 26
   Posted 9/16/2008 10:28 AM (GMT -7)   
So, after changing GIs once cause the first GI I ever went to refused to help since I was "in remission" and going to a second GI who told me that I only had IBS and put me on meds that didn't help, I went to a third GI.  And yep, I truly, truly have Crohns.  Absolutely no doubt about it.  C reactive was up, albumin was down and inflammation in my gut.
 
Up to a month before I had my most recent colonoscopy I couldn't stop having diahrea.  It was constant and like 5 times a day, completely liquid with mild pain.  Now after the colonoscopy (and being put on Asacol 800mg 3xday), I have extreme constipation/diahrea (starts out C for 3 or so days, and then goes to D) with extreme pain.  I think that's mostly from the bloating and stretching of my intestinal walls.  Luckily no bleeding or anything, but tons of mucus and all around uncomfortableness.
 
I go back to see the newest GI in a couple weeks to talk about how the meds are going.  I'm curious though.  There was a peer of mine in high school that also had Crohns and he was put on Remicade.  I've talked to him recently and he says that on Remicade he hasn't had a flare up in 6 years and feels hardly any pain.  I've ALWAYS felt pain, ever since a couple years before I was diagnosed the first time in 2004 (and before it really flared up).  I even felt extreme amounts of pain in remission when my previous GI said he could do nothing about it.  Back then I was on pentasa and entocort, don't know the dosages though, sorry.
 
Anyways, my question to all of you is, is there a medication out there that has helped you substantially in your symptoms?  And when you are in remission/on pills, do you feel pain, like pain that is so bad that you can hardly think and can't talk? 
 
It's all just very aggravating right now because I'm registered with my school for Crohn's Disease as being a disabled student, but many professors tend to be a bit snippy about it.  And I doubt they believe me or understand what I mean when I say sometimes I feel extreme pain and have to miss class.  It's really not the bowel movements that cause me to not be able to attend their class but the physical pain I feel associated with it.  And while I haven't talked to my new GI yet about something for the pain (cause he wants to see if it goes away with the Asacol which is hasn't) the two others I saw told me to talk OTC, which really don't help.  I'm really under the impression that doctors don't take me seriously, and its very depressing.
 
I really appreciate any input.
Dx with crohn's since Oct '04.
Dx with IBS since June 4, 2008.
Have had symptoms since 2000.
Medications: Levbid
 
About to see a nutritionist... I need help understanding food! :)


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/16/2008 10:42 AM (GMT -7)   
Sounds like you have had a run of bad drs Quesadilla. Nothing is more frustrating than a dr who won't listen to you. I ahve never had a full remission. I did have a partial, but I still had bouts of pain. In reality it may have just been a space of time when the disease was less active. I cannot tolerate Remicade so I can't ehlp yoou htere. Sorry!

I'm sorry you are having such a bad time. All that pain is hard to take. I have a high degree of pain too, but not all the time.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Persephone767
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/16/2008 12:44 PM (GMT -7)   
I agree that the doctors have a lot to do with it. When I was on Remicade it was amazing, I felt almost normal (until my reaction), yada yada years go by with no insurance, now I have insurance and I'm on Humira - which is also great, aside from the injection site pain, anyway, when I was in remission, or close to remission, there wasn't any pain. Maybe a little twinge here or there, but nothing to inhibit my daily activities. Did you also have an endoscopy? Did it show any strictures? Strictures could cause you pain even if everything else is functioning fairly smooth.

Finding something for the pain is a start, but unless you treat the reason for the pain you're not going to get very far. Finding a doctor who believes you, and trusts that you know what you're talking about (seeing as it is YOUR body...) is the key to getting things done. If this one isn't cutting it, you should seriously consider trying another one, even if it's inconvenient. I've gone through my fair share of idiots.

Oh, and as for the teachers...there's not much you can do about them. Some people just never understand. I had the same problem, my issue was more pain than bathroom related. Try not to let it stress you. Involve a school counselor if necessary, or whoever you might need to talk to that can talk to that particular teacher.
25 years old
Diagonsed in Jan 1997 with Crohn's Disease
Sick since Nov 1995
Diagnosed in June 2005 with Osteoporosis
Current Meds: Humira pen every other week
                    Methotrexate 25mg every week
                    Folic acid, multivitamin, calcium daily
Previous Meds...so many!


NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 9/16/2008 1:20 PM (GMT -7)   
I LOVE Remicade - I just started taking it 4 weeks ago, so i've only had it twice so far........knock on wood & hopefully i wont have any future reactions
I felt better almost immediately, within less then a day. Have hardly any pain & eat pretty much whatever i want
Obvi, everyone is different & reacts differently to meds
Im not a big fan of pain killers as i feel they just mask symptoms
The meds you are currently on sound pretty mild but a lot of docs like to try to solve it with meds that have the least possible side effects before they bring out the big guns

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 9/16/2008 3:07 PM (GMT -7)   

I totally feel you about the Drs not understanding, or not listening...I went for 3 years without being properly dx'd.  I am blessed to now have a GI that actually has Crohns disease himself, so nothing goes in one ear and out the other with him.  Its also very frustrating to have to explain to people that Crohns disease does not mean you just poop a lot lol.  Theres a lot more too it, horrible pain, fatigue ect ect... I'm so tired of having to explain to people at work why I feel so crappy.  Seems like they dont believe me too, or they wonder why one day I'm fine and the next day I can barely function.

The only medication that has left me with no pain at all is Prednisone, I was put on 100mg a day for around 3 months, when they started to taper me down I got very sick around 40mg...So..I get to have surgery on Friday to remove the diseased section.  I'm also on Humira, I havent been able to notice any difference at all with it though, my body is depending on the Prednisone until after the surgery, so I guess I'll see if the Humira keeps it under control after that.


Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:1 Bowel Resection, Gallbladder Removed. Another Resection Scheduled for September.
Current Meds: Humira (weekly), 60mg Pred, Levbid, Nexium.
 

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/18/2008 9:23 AM (GMT -7)   
MAG102886, I am almost jealous that you have a dr w/Crohn's! Isn't that terrible of me? No, really, how wonderful to have a dr that fully understands you. You are indeed blessed to have found this dr.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong

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