not handling things well

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Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 5/13/2009 3:09 PM (GMT -7)   
I was really doing ok until recently and now--and I really have no right to--I can't stop crying. I've been trying to ward it off but I've been an emotional wreck for 3 days. At first I thought it was just that I'd really begun the grieving process. Then, I thought it was because I've been experiencing this abdominal pain for a month. Now, my blood work came back with some troublesome liver numbers, doc is talking biopsy, abdominal pain is not letting up so might be up for ct scan--and I'm just not myself. Lately, the bag has just been bothering me. I have a lot to be thankful for. But I'm so scared of the unknown---ahesions, crohn's flaring, and autoimmune hepatitis.

I've been taking xanax which helps. But I can't get a grip. It's gorgeous out and all I can do is sit in my nightgown and cry. My mother was here yesterday which helped force me up and out but as soon as she left, I cried and cried until bed. I've been waking up in tears.

As for my husband, he listens but then he gets very distant. Thanks for listening.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 5/13/2009 3:16 PM (GMT -7)   
I'm so sorry you are having a tough time. I sure hope the drs can get a hold on the pain and liver condition. If you can tolerate it, force yourself up, showered and dressed Every day. Make a "to do" list.. maybe little things, one thing at a time. Please try to keep busy and keep your mind off of things. You can't control a lot of it, so try not to overthink stuff until you KNOW facts. I know that is easier said than done... I fret too. But know that we are here for you. Hugs,
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/13/2009 9:11 PM (GMT -7)   
its OK to go off the handle sometimes, you did just have a huge life changing thing happen to you!
It really does help to get outside and just be in the sun though. try really really hard to find something else to concentrate on even a stupid tv show. I dont know if you have comedy central but they have stand ups on all the time, and they are sooo funny, that might help you, somethign to make you laugh.

Hope you feel better!

Veteran Member

Date Joined Sep 2007
Total Posts : 687
   Posted 5/13/2009 9:47 PM (GMT -7)   

Sammies- you and I are a lot alike....... i wish i could be there to (((HUD AND LOVE))) you......I know you have had nutritional problems so you have to be aware of that through these times and they can also cause abnormal labs. I am listening to the mosy amazing thunderstorm right now....I live in MI and we have thenm often in April/May. I am so very depressed on xanax as wee and celexa....also percocet. I feel like I have no feelings, but my husband is very supportive. He went though some stiff for five years and he feels like I was a sint ans he owes me to be the same, your husband needs to be there not distance himself and you need to gain some weight to feel better. I was finally 102.8 this am!!!! but i still feel sick everyitme i eat....i drank some wine tonight and feel better.....when I was like you I had to take 3 mg of xanax to calm down....then i was admitted with abscess and had 1 mg ativan and 2 mg dilaudud and it was the only thing that calmed me down. I wish I could help you........


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 and still recovering.
Right abdominal abscess and hospitlilization April 20-24
Cleveland Clininc Surgery consult for kock pouch May 27 with Dr. Remzi (understudy of Dr. Fazio)
"The Greatest Healing Therapy is Friendship and Love"

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 5/14/2009 2:59 AM (GMT -7)   

sammies--hang in there...have they re-run the blood-work tests?  I've had FALSE abnormal results, too.  I had some blood-work done by my GP after my proctocolectomy and it went to a local lab...they aren't quite as good as my big hospital where by GI/Surgeon are...and when it came back off, I FREAKED, called my GI and emailed him my results...he calmly suggested I have them redone, the GP listened and they came back NORMAL...that story was just to show you that you aren't alone cool    Call you doc and ask them to be redone, then if something looks off you can go from there!

Your hubby is dealing with emotions, too, so don't be too hard...YET!!  You WILL feel better, take it day by day, I know that doesn't sound like much right now, but it does was 12 weeks for me (and I thought I would sail through such a big surgery because I'd had so many and knew what to do....wrong shocked )

Sending good vibes to you...

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 5/14/2009 9:08 PM (GMT -7)   
thanks for all the reassurance and good vibes. I see the GI on Friday. He's going to poke around the stoma and my tummy to see if there might be a small obstruction. Says he will explain the liver info to me. I really feel that the blood work needs to be redone before I go for any sort of biopsy. It's just all so overwhelming.

Over my 24+ years with disease, I've always felt that I was--not physically in control--but emotionally, mentally on top of things. I've always tried to be informed, positive, and involved. Now, there are so may variables, I am so overwhelmed. I've never felt this weak or this down.

Thanks for the help.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Regular Member

Date Joined Apr 2005
Total Posts : 269
   Posted 5/15/2009 9:05 PM (GMT -7)   

try not to worry too much about the liver stuff! I have been there before. I was diagnosed with primary sclerosing cholangitis and my LFT's (liver function tests) are always messed up. I was tested for autoimmune hepatitis. I know that it seems like crazy things are happening all around you but the doctors will do what they need to! They will get to the bottom of your liver issues. There are many things that can cause your blood work to be abnormal. If you have any questions about liver procedures just let me know! I have been through the gammet! I'm here to help! Good luck!

25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 5/17/2009 1:06 PM (GMT -7)   
Glacier girl--I feel better seeing your email but I am so scared. GI will do a liver biopsy to check for PSC, PBC, and autoimmune hepatitis. I am freaked out. I feel like I just can't handle another "condition." Maybe I am getting old but I'm having the worst time staying positive. I just don't have energy for it which is so frustrating.

OHIO76--I did ask him to redo the blood work. Turns out the second round he did was checking on the first. And things are still slow for me with the ileostomy. I think I may be eating fewer foods than when I came home from the hospital. Tried a few tastes of foods this weekend and the stoma was like a faucet.

Sorry to be so down. I've just "had it."
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Regular Member

Date Joined Apr 2005
Total Posts : 269
   Posted 5/19/2009 8:49 AM (GMT -7)   
When is your liver biopsy? I am hoping for the best but if things do come out as PSC or PBC please let me know. I can direct you to some great references. Have you experienced any jaundice or itching? These can be big indicators of liver disease, then again I never had any. Another tip I offer to you is to keep all youru medical records (if you don't already). I have made excel sheet of my labs!

about staying positive, I know it is hard. I remember crying my eyes out and just balling when my dr told me that all of these liver diseases result in transplantation but I have done my own research, read extensively, and educated myself. There are more studies coming out everyday! Stay positive!!! It is okay to have a breakdown every now and again but don't revel in it. If you need anything please let me know. I had tons of things that I have found over the years...I hope your tests were just a fluke...! Keep your chin up!

25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006

New Member

Date Joined May 2009
Total Posts : 5
   Posted 5/19/2009 9:38 AM (GMT -7)   
     I hope all is getting better.  I had major surgery back in August 2008.  I was in the hospital for about 5 weeks with 4 surgeries.  After the fourth surgery, I woke up to an iliostomy.  I was not happy.  Funny, though, I now can eat more foods without issue now than I was proir to the surgery.  The one thing that keeps me going is that I am still alive.  I have other faculties(like sight, legs, hearing, able to speak.).  When I see others with worse off conditions, I always think that life could be so much worse.  I know this is not easy to think about when things are tough; however, it does help if you try.  Be thankful for what you have and not worry for what you dont have.  "Yesterday is History, Tomorrow a Mystery, Today is a Gift, Thats why it's called the Present"
I hope that helps!  It will get better!
     My blood levels are elevated also where they want to do a liver biopsy.  I am a little afraid to do this at this point.  I am on cumadin for another issue and afraid of bleeding or any other issues with the biopsy.  I do not have any symptoms that I am aware of, just the doctor telling me that I may have some underlying liver issues.  They think maybe a CMV blood disorder?  Have you heard of this and have you had a liver biopsy?
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