Crohns ok but I'm far from it!!

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Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/3/2009 6:01 PM (GMT -7)   
Hey- Any advice much appreciated (& needed!) rolleyes
 
Ok so I've Crohn's for the past 4 yrs. Recently - I've been increasingly tired, if i do anything I'm exhaused to the point I can not concentrate, I have ongoing diarrhoea - some days more than others, nausea which is v. sever & comes with left sided pain. Also the pain latley is increasing to the point it is unbearable at times & i've to roll over on the bed in tears. The pain is always there, but to a milder extent.I also cant put on weight despite supplements, ensures etc & I've been eating more recently that I had been. I'm on entocort by the way 6mg. it was increased to 9mg & i actually got an appetite & felt hungry - i had forgotten what hunger felt like!
 
But I'm being lowered off the entocort cause my drs say i've no evidence of active crohns. they did a ct which showed thickening of the bowel wall - apparently insignificant to them anyway - i can't get a straight answer about this when i keep asking -all i'm told is the crohns is inactive. My last colonscopy was ok - 8 mths ago.
 
Now i do not feel ok, i cant hold down a job & i've been told to go home & eat & put on weight - eh needless to say i'm not too  happy about that as i don't feel any better. I'm quite frustrated at the moment as i dont know what to say to that!
 
Is this normal to feel like this if theres nothing going on crohns wise? What should I do - persist with the drs or believe them????? idea
Crohn's - duodenum, terminal ileum, descending colon, rectum & Reflux
Meds: remicade (1 infusion so far!), lansoprazole 30mg x 2 daily, almost off the pred (5mg), ensure +, exclusion diet.
 
 


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/3/2009 6:16 PM (GMT -7)   
What did they say the bowel wall thickening was? It must be from something. I'd probably be persistant and want to know if it's not Crohn's causing the wall thickening, what is? Inflammation of any kind and anywhere in the body usually isn't normal.

Maybe though, they wouldn't change your treatment because of you starting remicade, and they're hoping the remicade will kick in and get rid of the inflammation. Maybe it's a very small area, or it's very mild inflammation. I'm not sure, but I'd want to know if I was you, just for peace of mind.

I'd call the dr and tell them I have questions. It's their job to answer any questions you might have.

I'm hoping you get some relief soon!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/3/2009 6:21 PM (GMT -7)   
my meds are outa date there - i havent been on here in ages! I'm only on entocort at the mo.

They said the thickening was crohns but not active crohns???- they keep changing there minds & are seriously confusing me. I don't really get it at all!

Am going to try the questions thing again tomorrow !
 
 


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 3/3/2009 6:42 PM (GMT -7)   
I'd find a doctor that's more motivated to having you feel better. You should not have to fight, you need someone on your side who get's their jollies from making YOU feel better, not confusing you!!

:)

Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 3/4/2009 4:24 AM (GMT -7)   
Have they done blood work? You may be deficient in something... after my surgery in 2001, no one mentioned to me that I would no longer be able to absorb B12 and I steadily got more and more exhausted and unable to function normally. Well, it ended up being something as simple as low B12 and now I receive an injection every month.
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, tapering dose of 40mg Prednisone, Bentil and Percoset as needed... considering Remicade


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/4/2009 5:17 AM (GMT -7)   
Hi If there isn't alot of activity going on then that stricture must be causing you some pain..you seem to have crohn's in alot of places by looking at your signature..B-12 is a good idea for helping to get the energy going and a multi vitamin is good too. Pain for long periods of time is not the best way to live. Where is your thickening at? Not sure what you should do but I would keep on the Dr. especially if he is going to lower your med and your not doing so good..have you lost a good amount of weight recently? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2009 8:01 AM (GMT -7)   
Well if you found that the 9 mg of Entocort was helping and making you feel better, then something must be going on. I think if this doc is not willing to help you figure out whats going on and getting you feeling better, then maybe its time for a second opinion. No one should have to suffer. And there have been times when I have felt like POOP and my test results came back okay. Doesn't mean that there isnt something going on in there somewhere. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CazUK
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 3/4/2009 9:21 AM (GMT -7)   
I think you should get a second opinion too - you shouldn't have to suffer with unbearable pain.
Diagnosed with Crohn's disease in Sept 05 aged 24


Resection in Nov 06


Currently taking 125mg azathioprine, 10mg prednisolone (tapering), multivitamin, probiotics and omega 3
 
Previously taken Entocort, Flagyl, Cipro, Pentasa


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/4/2009 3:29 PM (GMT -7)   
idea "they keep changing there minds & are seriously confusing me"
Wild-Swan, I think this is what is technically known in any profession as "confusion". Them, not you. It does not bode well that they can think severe pain, increasing exhaustion and thickening of the gut wall means inactive Crohn's. Was I you, I'd be looking for doctors who can explain to me clearly and logically what the h*** is going on, or at least what they think the possibilities are.
What they are currently doing, IMO (it ain't humble ! eyes) is the exact opposite of what logic dictates. It is almost as if they just don't want to spend the money. Your symptoms are worsening, and they are cutting back on your meds ! That, more than anything, is what you need to really pin them down on. Because if they are only paying attention to a CT scan and an old colonosopy, they seriously don't know their @sses from their elbows and you need to steer well clear of them !
nono Don't be afraid to quote the phrase, "listen to the patient, (s)he is telling you what the disease is". It is an old, very basic medical maxim, and if they don't recognise it and sit up and take notice of it when reminded by a patient, then they practically have a stetson hanging on their office door - I don't care what courses they have been on.
tongue Someday I hope to be this forceful with my own doctors !

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/4/2009 5:34 PM (GMT -7)   
Or just go into their office and yell "listen to me, I'm paying your paycheck"

Let us know what they have to say once you talk to them. Hopefully you'll get some answers. Otherwise, find another doc if you can.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12


Newmans Dad
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/5/2009 4:13 PM (GMT -7)   
Hi All New guy here but veteran Crohns warrior [class of 82 to be exact]. The tiredness could be low iron I had that pretty bad a couple of times. As some of the others have said keep asking questions, the doctor is not in charge you are and keep a positive outlook. The disease lives with you, not the other way round. Peace

Doug

Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/7/2009 2:00 PM (GMT -7)   
Thanks everyone for your replies & support! Got my bloods done & turns out i'm low in iron - i thought this was strange for someone supposed to be ok. Also have discovered inconsistencies in reading my ct scans - a junior dr let it slip that yrs ago they found exactly the same thing 2 times & it was taken to be and treated as a flare up!! So i'm going to get an extra/second opinion & go back to my dr & lay it on the line!! I have to do this as the pain is gone to the point i can barely walk over the last few days - and i don't want to wait for the c**p to hit the fan so to speak!!!

My thickening is at the terminal ileum & as i've discovered has been there consistently for years - also looking back i now think i've had a few bowel obstructions but didn't realise OR the doctors didn't realise. I'm defo going to push to see a surgeon as i've never seen one before. I've lost weight recently despite pumping up on the ensures.
 
 


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/7/2009 2:15 PM (GMT -7)   
These guys (probably the ones at the top) don't have their act together, do they ! Best of luck, and don't be afraid to put them on the spot... smilewinkgrin
nono When it comes to talking about surgery, make sure it is a surgeon who does specialise in Crohn's Disease. Otherwise they will totally misjudge the risks inherent in the procedures - Crohnies heal slower after surgery, and can have all sorts of complications, even from minor procedures.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/7/2009 2:38 PM (GMT -7)   
Hi Glad your getting onto things and the TI seems to cause alot of problems for alot here. Get something to get your blood working better. Let us know how things are progressing and glad you are taking some good steps to better health we need to be assertive at times.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/7/2009 3:35 PM (GMT -7)   
I agree that B12 could be an issue too, but what wasn't pointed out is that you have to specifically ask for the doctor to test for it. It isn't part of the normal blood work. So when you go for your second opinion ask to be tested for that too!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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