I think I'm going downhill.. This is a major vent post.. sorry everyone..

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Veteran Member

Date Joined Feb 2005
Total Posts : 1373
   Posted 4/2/2010 12:40 AM (GMT -6)   
Hi everyone...

I think I'm going downhill... I Just can't get this right sided pain to go away... My colon feels like it's bulging out on the right side quite often too and I get periods where my entire colon feels sore and icky.. I'm starting to get slight nausea sometimes also and losing my appetite.... I've lost 23lbs so far since coming off Pred in January and that part is good, but I'm so scared about this darn pain and fullness feeling... It's been 3 weeks since my pill cam test I think and I still haven't heard the results since my GI went on vacation right after I swallowed the darn thing.. He came back this last Monday, but I guess it takes some time to go over all the footage from the test...

I also think I really blew it by having that FRIGGEN wisdom tooth pulled out 3 days after starting Entocort.. I was feeling almost 100 percent better 2 days after starting it... Plus all the crap going on with my drug addicted husband doesn't help... I'm still not out of the house and he's still using.. UGH UGH UGH.... At least we're not at each other's throats right now... I've dropped it because I just can't stand the arguing right now... He says he'll stop using on his own terms and when he's ready... BLAH BLAH BLAH... ya right.....

I honestly feel that surgery is in my near future and it scares the heck out of me.. I have a colonoscopy scheduled for May 14th.. I hope I can hold out that long... I don't know if I can take much more... I wish I could just give up, but I can't because I don't have anyplace to give up too..

I'm eating only baby food right now... Hoping that will give my guts somewhat of a rest... I don't even know if I'm doing the right thing eating baby food.. I feel soooo lost right now....

Sorry about depressing post... just had to get it off my chest...
 Diagnosed with Ulcerative Colitis January 31st, 2005, Testing for Crohn's 3/10
 Prior Meds:
Canasa, Rowasa, Lialda, Apriso, Prednisone, 1 infusion of Remicade.. none of those worked for too long... Had neurological complications from the Remicade...
 Current Meds:
Pentasa 2000mg 2x a day, Entocort 9mg daily, Nexium 40mg once a day, Wellbutrin 150mg once a day. Culturelle 2x a day, Xanax as needed and Ambien at night for sleep..  

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 4/2/2010 5:55 AM (GMT -6)   
Hi Susiebuddy,sorry to hear things are still not going well, can you not try and get the colonoscopy appointment brought forward? seeing as you are losing weight quite quick and loss of appietite. If you do end up going down the surgery route please try not to worry to much I went through something similar to you with the bulging right side weight loss etc.. ,but it got to the stage what ever I ate once it hit that area I would be in agony I ended up having a right hemicolectomy done and it was the best thing I ever did! i was fourtunate to get a really long remmision from it too. really hope you are sorted out soon ,you really do have enough on your plate already. Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2010 10:29 AM (GMT -6)   
Susiebuddy I would call your doctors office and let them know how bad you are feeling and also ask about the results of the pillcam. Also, stress will trigger flare like symptoms in me that will cause diarrhea and nausea. So do keep that in mind. But there is no need for you to wait any longer, call your doctor and demand some action and advise them you are going downhill fast. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 4/2/2010 10:46 AM (GMT -6)   
I agree. Call your doctor's office right away. 2 years ago, when my husband ended up in the hospital in pretty serious condition, I think it could have been prevented with more timely care. So, please don't wait any longer . . . get your doc to put you on the right track.

Stress is pretty bad on your gut - I don't have crohn's, but I do have a nervous tummy when I get anxious and stressed out. So, that could also be playing a part in all this. Also, I know remicade caused problems, but what do you and your doc think about the other anti-tnf agents like Humira & Cimzia? It could be that you'll do fine on those, but of course, this is a decision for you and your doc to make. I guess it also depends on how serious the neurological problems were when you took remicade - if it was bad enough, I would certainly not try another anti-tnf.

Another thing you might try is just surviving on ensure. I've read that an enteral diet can help manage symptoms and can sometimes even lead to remission.

Hang in there Susie. I hope you get back on the road to recovery soon.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 4/2/2010 4:53 PM (GMT -6)   
I'm sorry about all your pain. I like the others' suggestions on calling the doc and possibly moving the test up sooner.

I was in a lot of pain too. And I was just waiting for the docs and the tests because I figured well, I have a conoloscopy scheduled for the 8th. But then I was in the hospital for 5 days.

Being downhill sucks. I hear ya. I hope you feel better soon!
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 mg of Prednisone.  And I really really don't want to.

Regular Member

Date Joined Sep 2009
Total Posts : 90
   Posted 4/2/2010 6:57 PM (GMT -6)   
Hey there, just someone else out there sharing your pain and frustration.
I am on a road of man troubles my self as well, and there isn't a day that goes by that my eyes are not filled with tears.
I am trying so hard to to keep a float "tredding water" and somedays I want to just wish it all away!
It's so hard.... cry
One thing I do is I turn to music. Try it! Play all your favorite songs, and turn it up, way up, play it loud.
It seems to help me, kinda like a fix of a good medicine, it re-enforces my hope and builds up my strength a bit.

So find some good tunes and crank up the volume and it may help to wash away all the pain and tears!

Best of luck!
I feel you!

Cheers! wink
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun

In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.

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