Feeling Alone.

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Veteran Member

Date Joined Aug 2007
Total Posts : 650
   Posted 7/1/2009 1:20 PM (GMT -6)   
I just feel like I have no one to talk to sometimes... mostly because I feel like I talk about my disease way too much or my status too much.. and people get annoyed.. I even feel like I post too much on here and sound whiny. I'm just really tired.

I woke up today because my stomach said I had to go the bathroom and had to go NOW..... I spent the next two hours in the bathroom... and lost the precious hour of sleep I usually get...and let me tell you.. it's needed. I get 10 hours of sleep a night! and I STILL feel exhausted and tired the next day.....

I work at a Preschool.. in the younger toddler room.. I need this job because hubby just lost 500 a month going to a new job.. and I just went fulltime a month ago because i WAS in remission... making it to work is getting harder and harder.. and being that I need someone to relieve me every time i need to go to the bathroom.. it's TOUGH. I'm so tired of everyone asking if I'm okay... and saying IM GOOD... when I really want to say.. well.. this morning i crapped for a full two hours and im still gassy and my stomach is in so much pain.. i was woken up early to go to the bathroom.. i haven't had breakfast.. i'm starving, but afraid to eat.. i feel weak and my joints hurt so bad.. and im on 4 diff meds... NO IM NOT OK.

My mom is so HECK BENT on the way I eat... saying if I ONLY ate this.. if I ONLY tried this... she said she's tired of hearing about it because I'm not DOING enough to help myself.. WHATEVER WOMAN! GR. If she ONLY knew.

And now I have to wait on 6mp to kick in.. if it does within 6 months.. Dr. said 1 month... you guys say up to 6. I'm freaking out.. what IF it doesn't kick in.. and the Lialda and Rowasa don't put me in remission... and it gets worse.. ? Remicade.. surgery. I'm SO TIRED OF THIS!!!!!!!

and I just feel alone...and depressed.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!

Regular Member

Date Joined Jun 2009
Total Posts : 173
   Posted 7/1/2009 1:39 PM (GMT -6)   
My heart goes out to you. I think you need to talk to your GI about getting a treatment plan that will get you up to a functioning level (which you are definitely not at right now!) faster than whatever it is you are doing. Maybe prednisone?

I hate being at work during a flare. It is so hard. And to have to find someone to cover for you each time... I can't imagine. How awkward.

Times get tough and I have been there girlfriend. I try to focus on the people I love and why I need to be strong for them and not give up. For me, it is my daughters.

Maybe you could drink an Ensure while you're at work? Then at least you won't pass out or anything!

I sincerely hope you are feeling better very soon and in the meantime, I would give your GI a call and tell him you are at the end of your rope.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09

Veteran Member

Date Joined Feb 2005
Total Posts : 6447
   Posted 7/1/2009 2:17 PM (GMT -6)   
Hey SweetMelody; glad you know that this is a good place to come when you are feeling down. Whining is definitely allowed here! I agree with AmyWaffle; call your GI and talk to them....tell them your quality of life is terrible and that you need some help...now! ((((Hugs)))) to you, and remember...we are all in this together.


Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
Co-Moderator for the UC Forum

Regular Member

Date Joined Nov 2008
Total Posts : 339
   Posted 7/1/2009 2:42 PM (GMT -6)   
I think you need some change in your medication. Even i am on Lialda + Canasa and not getting much help, so will see GI soon! i am having this flare up since Jan'09 - i am also tired, but we need to keep working/trying new combinations to get into remission.
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 7/1/2009 5:58 PM (GMT -6)   
Kara, I'm sorry you're having such a difficult time now. Everyone is right, this is the place to come to whine, moan, vent or whatever you need to do. No matter what you're feeling at the time, there will be people here who have felt the same. I totally feel your pain, because as you know, I was flaring for a very long time.

I learned to respond to "How are you today?" with either "Great, thanks!" or "It was a difficult morning." Nothing more, but it did cue people as to when I wasn't feeling well.

I hope you and your doctor arrive at a plan that works soon. And remember, Remicade has given a lot of us back our lives and surgery has given a lot of others their lives. So whatever happens, there is a rainbow ahead.
Ulcerative colitis forum co-moderator
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"

Veteran Member

Date Joined Aug 2007
Total Posts : 650
   Posted 7/1/2009 6:08 PM (GMT -6)   
Thank you guys... it really helps that I have such a great support system! aka you guys!

I think Ensure is a good idea.. for days when eating only a turkey sandwich still makes me run to the bathroom.

My GI finally just from this flex sig BELIEVES I have UC... so I don't really know how far he'll go to help me just yet... I want to wait it out just a LITTLE bit longer and see if anything helps.. cuz I've only been doing the Rowasa for a week so far. I swear though.. a month from now.. if I'm like this.. I'm asking for Remicade. In fact if I get worse while I'm "waiting it out" I'll ask bout Rem.

I go get bloodwork done on the 9th. Then have a GI apptment on the 10th... so we'll see what he says.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 7/2/2009 9:00 AM (GMT -6)   

Certainly whining here is allowed - go ahead.

I see you take 50 mg. of 6 MP.  Ask your doctor about a higher dose.  My blood work showed that 50 mg. was not therapeutic so I tried 75mg. and got too many side effects to continue so no use taking it if it does nothing.


Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.

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