Surgery, prolonged steroid use

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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/7/2009 8:17 PM (GMT -7)   
I was just wondering, for those of you have had or are planning to have surgery, what caused you to finally make that decision?
It's just that my GI and I have tried since diagnosis to stop internal bleeding and keep it that way, but it always comes back after a month or few. I'm not having too many pains since I am taking bentyl and a half tablet of immodium twice a day, but I am losing blood yet again.
I'm attributing most of this to some antibiotics a couple weeks ago and my recent situation with my fiance. We have been fighting a lot and he had to keep me from purposely overdosing or running for the nearest knife after a fight last night.
Point being, it's most likely the stress and recent new medication that have triggered the bleeding, but I wanted to know if I can keep going on like this? I don't feel like I need surgery nor do I want it at the moment(will eventually most likely).
And how long can you stay on steroids before, physically speaking, enough is enough? I just have a hard time when I am off of the prednisone but can generally be all right on 10 mg. Anyway, thanks in advance.
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/7/2009 10:00 PM (GMT -7)   
Well for me it was my last obstruction that landed me in the hospital. After I got out they did a colonoscopy, SBFT, and live x-ray, and found that I had severe narrowing that was due to scar tissue. No drug will ever fix that. My doc said the next best thing was surgery. I met with my surgeon and she agreed that it was of my best interest. Now mind you I really never had any pain and my bowel movements were once/day and formed. I did have a had time trying to get off the Pred. I started to oget pain again when I weaned down to 5mg. I went back to 20mg for 1-2 months and weaned off than.
My surgeon was completely amazed at how i was getting any food through the narrowing. She told my wife that I had to of been not telling anyone that I was in pain,which I wasn't. She said that i would have definetly been in the hospital soon with another obstruction and possible perforation. I would of then required emergency surgery. I have pictures and I am amazed that it was that bad when i really did not feel bad.
I guess my moral of the story is: I was better off having elective surgery, rather than emergency surgery, and it can always be worse then what you think.

Sorry for babbling!
Best of luck in your decision and I hope you feel good soon!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

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


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/8/2009 4:33 AM (GMT -7)   
Hi I had a resection because the GI said there comes a time when surgery should be done.. I knew that I needed it and could not have gone on the way things were. I had a narrowing in the TI that just would not go away ..as for pred. only you can decide if you have had enough and look for other meds or surgery.. Sounds like a shot of B-12 might be needed for you with the blood lost.. If the pred is causing you some bad emotional problems then could you get to your Dr. and talk about this ,I am concerned for you with the fighting that is going on ,pred. is known to cause those type of thoughts of suicide ,get some help with this please.. do you feel that you are sick enough to need hospital care? Hope you are feeling better today but get onto some help as soon as you can...lots of love gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/8/2009 5:07 AM (GMT -7)   
I don't know if I need hospital care right now but maybe soon, and I really feel so much that it is the stress. Last night I sucked it up and called a break, a real break, in our relationship because I couldn't stand that I couldn't make him happy, that he would stay out late because it was preferable to coming home and that he still thought about asking heather on a date. It makes me sick and it really does make for some dark thoughts concerning my worth as a woman and human being.
I'm sure the prednisone isn't helping, but you're right I should get help...I have never been so depressed.
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2009 7:28 AM (GMT -7)   
LMills I am very concerned with your spirits right now, almost more than your Crohns. PLEASE get in and see either your family doc or GI soon as you can, I really think you do need some type of Antidepressant. Being sick so long, and having to take Pred for so long and your relationship troubles added to it, I think even you know it is time to get some help. Please don't wait any longer, please see your doctor asap. I will keep you in my prayers.

Hugs,
Gail *Nanners*
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"*

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/8/2009 7:39 AM (GMT -7)   
I really want to but no one is even there to take my call right now...you know I counted and I have been crying since 1:30 last night. I can barely speak now..I just want him to come home...I don't know what to do. I can't even get any medicine to make this go away right now.
Thank you guys for your concern. I am grateful so please know that..
I just..don't really know. I don't want to do anything. I wish I could just go to sleep and not wake up you know?
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/8/2009 8:40 AM (GMT -7)   
Hi Have you thought about going to emerg. can you get someone to take you or call a cab? Even though you are having problems in your relationship it should not upset you this much.. when I was really sick I too thought of giving up and that is a sure sign that medical help is needed.. you have to do this for yourself and you can have faith in yourself and things can get better.. I finally got up and got some help you must to... I am counting on you to try ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/9/2009 12:27 AM (GMT -7)   
No, it should not have made me feel that way, but it was the most painful thing I have ever felt even compared to Crohn's problems. I thought I might die.
He went out like I told him to, tried a new girl like I told him to, and he came back saying he felt nothing with them and he really wanted this life. That he understood he said that last time, but we didn't give each other a chance to really spend time apart. I know what I want...it was just up to him really and he chose and I am really happy...with a new found appreciation for him as a person and a greater understanding of human beings.
I still will try to go to the ER soon. This depression can't last or it will kill everything and the blood loss is not improving so..
Thank you guys for your advice...I really wouldn't know what to do or even think without you and it's just been nice knowing someone cares.
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/9/2009 12:40 AM (GMT -7)   
We do care, LMills. You're a very precious member of this forum and a very special human being and we would miss you terribly if anything happened to you. You take good care of yourself, ok, and *please* don't hesitate if you feel you need to be in the hospital.

*huge but gentle hug*

Ivy.
Co-Moderator Crohn's Forum.


annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 3/9/2009 7:54 AM (GMT -7)   
LMills,

I am pretty new around here but I totally feel your pain - both with the crohns and the depression. I have to seriously encourage you to go to see you general doctor or GI and tell them what you are feeling. And don't sugar coat it either. They need to know exactly what is going on. Depression and anxiety are common with long term illness. I suffer as well (well I "suffer" anymore as I am on a cocktail of crazy pills). When people ask me about it I try to explain it like this. A person can only handle so much stress. Image that you have a stress cup in your head. Everytime you have stress you put a little bit more liquid in that cup. Eventually that cup will overflow. Long term illness means that your cup is always somewhat full so even the smallest thing can put you over the edge. Most people seem to get that analogy.

As for the surgery question...I elected to have my first surgery when I was in college. I had been very sick for about 8 years and on pred. most of that time. I got sick of being sick. It ended up that when they got in there for what they thought would be a standard operation, I had a massive absest (imagine a softball) in my gut. Apparently, I had been perforated for sometime and didn't even know it. It was amazing how much better I felt. I went from barely finishing 15 credit hours to flying through 23 credit hours, working 2 jobs, and still having fun.

My second surgery was emergency surgery as I perfed mid-colonoscopy. That one was not so fun. But very necessary.

Please please please seek some guidance from a professional. Once I was over my initial anxiety, I got the book "The feeling good book" by Dr. David Burns. I have read it probably 6 times now. It spoke to me and gave me a different perspective on things.

Good Luck. You will be in my thoughts.

-K
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/9/2009 9:30 AM (GMT -7)   
Well, the only reason I am going to cry now is because of how sweet you guys are...Your kindness never ceases to amaze me and I really do love all of you!!!
I will definitely have a lot of questions for my GI when I go in. I am sick of being prednisone...it's such a downer on self-esteem and mood in general(like I need to tell ANY of you that).
I will be looking for help...I know my university offers free counseling as well.
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 3/9/2009 11:00 AM (GMT -7)   
Crohns and college are a tough combo. I was there and it wasn't easy. My sorority sisters even left one toilet stall open for me at all times.

Keep your chin up. There is light at the end of the tunnel.
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/9/2009 11:49 AM (GMT -7)   
I'm really glad to hear you had supportive people in college :) I think it truly does make all the difference...
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, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."

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