I guess it really is official - my GI said "You're screwed."

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Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 9/11/2009 3:44 PM (GMT -7)   
Been a little scarce this last month. I developed major RLQ pain, severe nausea, and odd bowel screeches. I knew what was wrong and went to the ER. Loads of blood test, CT scan, xrays, and consultations confirmed what I knew. I was having another bout of cecal diverticulitis. This was my third such episode since 2003. This diverticulum is right above my appendix so of course they must rule out appendicitis each time. Having a cecal diverticulum is very rare. Of course, there were a couple doctors arguing this was a Crohn's causing a partial obstruction. Was sent home with 2 types of antibiotics and I thought all would be good.
 
Wrong...two days later I was so dehydrated from all the diarrhea and very, very weak. Also the pain had not subsided, in fact it was worse. Had my daughter take me to my primary doc's office. The doc took one look at me and I was immediately admitted. I had lost 8 pounds in 48 hours! That was my first hospitalization in 21 years! I won't bore you with the drama of my hospital stay.
 
Saw my GI yesterday. He asked for all the details leading up to my hospitalization. Then he stepped out to go view my CT scan films. When he walked back into the room, the first thing he said was "You're screwed." He went on to explain that if this was cecal diverticulitis, a third episode would get me a referral to a surgeon for a resection. However, the GI is not sure this was diverticulitis. If it was Crohn's, then opening me up would be a big mistake. Also, I have so many other medical issues that I am at real risk if I need surgery. I would appreciate anyone so inclined to keep their fingers crossed that I do not have another episode within the next 3 months. Because the GI said a repeat episode within 3 months was an exception to what he said. Then I would have to be explored.
 
What is the issue causing the risk besides the immunosuppression? When I was in the ER, they did bleeding times on me. Mine were elevated. These were still elevated three weeks later. So now I am being worked up to find the cause of my clotting disorder. Lupus related clotting issues and liver disease have been ruled out. Waiting for a call from my PCM. When I left his office he was on his way to talk to the hematologist.
 
I'm also very low in magnesium and the docs are uncertain what is causing that. I'm still anemic. The vascular surgeon is pushing to put a stent in my leg because the arterial flow is so compromised. That is on hold until the clotting disorder is solved.
 
Sorry about the whine. Some of you have problems that make mine look like non-issues. I just feel frustrated and whining does help sometimes. I do have some positive news. The Simponi works great! The SI joint inflammation and various areas of enthesitis get much better after the injection. It also seems to have a positive effect on my gut related issues.
~~Ides
BTW ~ My GI is fabulous. We have a great relationship and I don't want any of you to think that his telling me I was screwed is inappropriate. cool
 
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/11/2009 4:07 PM (GMT -7)   
Oh, Ides. That's something we never, ever want to hear from our doctors...

I don't blame you for feeling frustrated. It's so hard to get adequate treatment when you are trying to juggle so many medical issues.

I'm glad, at least, that the Simponi is helping.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/11/2009 4:35 PM (GMT -7)   
Mya, that's all well and good, but could you stick to giving support and advice outside the bounds of selling a product? Some people get very offended by it.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/11/2009 5:35 PM (GMT -7)   
Ides, I'm so sorry to hear about your recent trials. I will keep my fingers crossed for you. Thanks for the good news about the simponi.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 9/11/2009 6:18 PM (GMT -7)   
Ides,
Glad the Simponi is working for you, but sad to hear of all you are going through, will keep you in my thoguhts.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/11/2009 6:58 PM (GMT -7)   
((hugs))

Sending good thoughts your way, Ides.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/11/2009 7:27 PM (GMT -7)   

Oh, I am so sorry you're facing all of this. *hugs*

I am glad you have a great GI on your side. This is my 4th GI since my dx and wow, having a fabulous one you get along wit makes ALL the difference in my care.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 9/11/2009 9:22 PM (GMT -7)   
Hope you feel better soon!!! (Hugs)
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/11/2009 11:46 PM (GMT -7)   
Ides,
My daughter's bleeding times have been goofed up by her Crohns. GI says she doesn't make enough vitamin K in her intestines because of the diarrhea. Her potassium was kattywampus, too, so he has her eat lots of bananas to slow down the D and give her body time to absorb the vitamin K she produces. I can't help much but I'm sending a little prayer your way.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/12/2009 6:51 AM (GMT -7)   
Oh Ides that sounds like too much trouble! I'm praying you get relief ASAP, and for strength to endure through this latest problem. Heal soon!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2009 6:56 AM (GMT -7)   
Goodness Ides you are definetly in the middle of a rough spot right now with all these issues going on. Glad to hear at least you are getting some relief with the Simponi. Will definetly keep fingers and toes crossed that things get better for you.

Big and gentle hugs,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/12/2009 10:52 AM (GMT -7)   
Oh, Ides!!!! BUMMER! I'm so sorry. (((hugs))) I'll sure be saying my prayers that you make it safely and comfortably way past that 3 months mark!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/12/2009 2:58 PM (GMT -7)   
hey if i was screwed , id be gettin' paid, but thats another story... sorry to hear ides.. were you at the big goverment run hospital with this problem? geez you know if ya let people know id come see ya.
randynoguts 



     http://www.geocities.com/randynogutsweb/


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/13/2009 4:40 PM (GMT -7)   
Hugs, fingers crossed.
27 Year old married female.  Graduated law school this year and waiting for results of the bar exam.  Start a new job sometime in September.  Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/13/2009 8:06 PM (GMT -7)   
Yeah, Randy - I was at our local government hospital. What a nightmare! I wasn't up for visitors though....I was so ill when I went, I didn't take any make-up or cute jammies with me. I would have been appalled were anyone to see me in such a condition...LOL!
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/13/2009 9:32 PM (GMT -7)   

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/14/2009 6:00 AM (GMT -7)   
Hey Ides, I hope you get to feeling LOTS better soon.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/14/2009 7:45 AM (GMT -7)   
Hopes and prayers for you Ides. Big hug too. Maybe two is the charm this time . Keeps us informed...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/14/2009 6:31 PM (GMT -7)   
Our thoughts and prayers are with you to make it past the 3 months!!!

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 9/14/2009 8:34 PM (GMT -7)   
Some doctors are such pricks. Get a female doctor instead.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Zosyn IV 4.5g x 3, Flucanozole 200mg, Asacol 4 x 3


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 9/15/2009 6:06 AM (GMT -7)   

I hope you feel better soon :-)

 

I'm sorry,but what your doctor said to you,was so insensitive,especially when you feel so bad,you can always get another doctor,someone who will treat you right!! One day your doctor may be really sick,and his doctor may say to him,"your'e screwed",how would he feel??

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