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08-03-2014, 10:23 PM   #31
DJW
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Is counciling something you'd consider? You might find it very helpful.
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Crohn's Disease
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08-06-2014, 06:45 AM   #32
cleuger
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Yes I would consider it and I truley believe I need it. it may be what I need to move on in a healthy way but at the moment I'm in the hospitol with surgery most like happaning I have a ct scan today and am on bowel rest which is fine by me since I don't eat anyway.
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Diagnosed 10/02/2012 Crohns Colitis
05/28/14 Surgery Abscess due to Fistula
09/18/2014 Surgery Total Proctocolectomy
rectum removed and closed up.
Best Decision I ever made.

Gastro Released me said I didn't need meds any longer

Have 3 kids only 1 at home 17 yr old is Type 1 Diabetic


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08-06-2014, 06:56 AM   #33
DJW
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In any hospital I've been in they have a social worker on staff. Is that common practice at your hospital?
08-06-2014, 07:44 AM   #34
cleuger
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I'm not sure I've never been to this hospitol before. I'm down in Fort Lauderdale they have colon rectal surgeons here. I can ask? I know one thing I'm on bowel rest but their not giving me anything no TPN nothing and I've already lost so much weight it's scarring me.
08-07-2014, 06:41 AM   #35
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Every hospital has someone to talk to,ask your nurse.They take into consideration different faiths and cultures.They must have people available.
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08-07-2014, 07:20 AM   #36
cleuger
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I will tell you the medical staff here is so compassionate. It's not a net hospitol the one I go to where I love, however when asking to speak to spmene I think they misunderstood me they sent this little old 90 ur old women who is also the Chaplin. She came in and prayed over me. It was very considerate of them to try and help bit that wasn't exactly what I was looking for. They reviewed the ct scan from yesterday the only stricture they saw was one in my sigmoid going down to my rectim. I have 3 small fistualas that they can tell. I'll have my scop today to tell me more. I had a fleet enema last night and I'm here to tell you for the first te I'm weeks starving I won't have the scop till after 12:00 I'm curious to see how long this stricture is not sire about surgery now. They want to get a better look at things.

Cindy
08-07-2014, 08:54 AM   #37
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Hang in there cleuger, it sounds like you are on the road to recovery. I don't know the process but I do know alot of your troubles are being addressed. So better times are on the horizon.
08-07-2014, 08:55 AM   #38
Daisy123
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I have had six/seven resections and don't regret one of them. I still have down days but life is good. It is normal to be scared of surgery, but trust me once you have recovered you will feel better than you have felt in years. I had a temporary ileostomy many years ago and didn't like it, but it allowed my bowel to heal and gave me the longest remission I have ever had. Have you considered antidepressants? I have been on and off them for years, they helped me through very dark patches.
08-07-2014, 09:01 AM   #39
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I found the surgery to really suck at first, but the relief its given me since recovering has been so worth it. Best of luck. You are not alone (even though it may seem like it at times).
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dx Crohn's in TI March 2012

Surgery on Dec. 11th, 2012-Ileocolic resection

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08-07-2014, 12:08 PM   #40
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Every hospital has someone to talk to,ask your nurse.They take into consideration different faiths and cultures.They must have people available.
cleuger,

Most hospitals I'm familiar with have social workers or someone similar. Some of them even specialize in helping patients manage major and/or chronic diseases. Talk with your nurses about it, and ask to speak with them.

Good luck.
08-07-2014, 07:50 PM   #41
cleuger
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Ok so today they did the colonoscopy and they did an endoscopy so they could see if I have any fistualas on my small bowel. They put my lights out to do this after he have me the stuff in my IV I don't remember anything till I woke up. Is that what it's like with a resection she did say surgery would be within the next few weeks. I have a very narrow stricture. And my buddy's the fisrulas. Most all of the disease is contaminated the the sigmoid and rectim. So am I the only one scared of surgery? Were any of you? I'm sure most are scared I can't imagine anyone not being scared. I more scared of the surgery then the pain to follow. I'm not right!!!
08-07-2014, 07:52 PM   #42
cleuger
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I have had six/seven resections and don't regret one of them. I still have down days but life is good. It is normal to be scared of surgery, but trust me once you have recovered you will feel better than you have felt in years. I had a temporary ileostomy many years ago and didn't like it, but it allowed my bowel to heal and gave me the longest remission I have ever had. Have you considered antidepressants? I have been on and off them for years, they helped me through very dark patches.
I loved reading this it helps to read positive stories. Thanks
Cindy
08-07-2014, 08:05 PM   #43
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We are all here for you. Sending support.

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08-07-2014, 09:16 PM   #44
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Being scared is totally normal. You can ask for something before you go down.

Pain management post surgery is very good. Its important to stay on top of the pain. You will heal quicker. Typically you with get a pain management pump. Sometimes an epidural. Ive had both. You push the button when you need it (pain pump). You cannot overdose. In recovery they will give you something directly in the if. Its the really good stuff. You also have a catheter in so you don't need to be up running to the bathroom.

I'm given ice chips after surgery. Then clear fluids, fluids, soft food, regular food. This starts as the bowel wakes up.

I found more pain from gas than surgery. Walking will get rid of it. You'll be up out of bed the next morning. Typically discharged 7 or so days after.

Surgery gave me my life back. No regrets.

I wish you the best.
08-08-2014, 07:49 AM   #45
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When they say you can walk around,I recommend doing so.It will help wake up your 'guts' and help with the healing.It will also give you something to do.I logged many a mile pushing my IV stand around.The wing I was in had 'hiking' maps and the distance of each 'trail'.

It has been nine months since my resection.It has helped me tremendously.I feel it helped,in my opinion,my quality of life.I didn't really have a choice,I went in to the ER with what turned out to be a close to total blockage.

Take your time recovering and don't rush things.You will be fine.You will get back on your feet again and enjoy life.Try to walk when you are home.I guess I shuffled more than walked..but you get the picture. Listen to your body.

I feel I have to add the ubiquitous 'we are all different'.This includes post-op healing.If you are in pain,take the pain meds.You will heal on your schedule.You may heal quicker than some or slower than others,but you will heal.
09-27-2014, 09:53 PM   #46
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Cindy how is it going? Feeling better I hope. I live in Ocala if you need to vent, just need someone to talk to that understands about having crohn's just PM me for my phone number happy to help.

Operations are always scary no matter how many you've had it never changes. Don't give in to the dark side, stay positive everything works out for the best.

Please post let us know how you are doing..
09-28-2014, 05:23 AM   #47
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Hope you are doing well,Cindy.
09-28-2014, 05:34 AM   #48
cleuger
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Hello to my friends in my little black box lol referring to my laptop lol. I'm actually doing good. I'm to get discharged today to go home. I'm feeling better each day I've gotten a lot of good solid advise for everyone ive talked with here and am truly grateful.looks like I may have an infection where the staples are on my belly button I've got some drainage from there. I've been so great I've had no pain where the removed the rectum most of my pain has been around where the stoma is and a pressure type pain when I pee . Surgeon says it's normal normal for that area to hurt since they have to cut into the muscle there to create the stoma. I changed my bag yesterday by myself I made one big mess next time I'll make sure to have a towel handy.
Thanks for checking in on me
09-28-2014, 05:44 AM   #49
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Happy to hear you are going home.Hospitals,ironically,are not the place to heal.Don't over do when you get home! Follow the instructions they give you..even when you don't want to. Look forward to your updates.

Dave
09-29-2014, 10:59 AM   #50
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I said this on your thread on the stoma forum too, but it's so great that you're happy with the stoma!

I always seem to get pain when I pee after surgeries, even though I've had lots of different types of surgeries (laproscopic, open, major, minor, etc.). I was told it's because the anaesthetic causes your bladder to temporarily shut down - the same as you experienced with your digestive system taking a while to "wake up" after your surgery. After a couple of surgeries, I wasn't able to pee at all for a couple of days. It hurts because you're having to force it out when the muscles are working against anything going out. That's what I was told anyway. You don't have any burning pain when you pee, do you? Did you have a catheter in after the surgery?

Enjoy being home!
09-29-2014, 11:16 AM   #51
cleuger
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No it doesn't burn and yes I did have a cathitor I kind of hated when they took it out u was just fine laying right there in bed not having to worry about getting up and peeing what really made me pee a lot was when they started the tpn along with the other iv fluids I was a peeing machinem it's weird it feels like muscles contracting or a big Charlies horse I feel pressure sometimes when I pee not quit as bad as it was. The muscle spasm's around my stoma that's a whole different story when the pain meds wear off all I can say is when I get up and move around it hurts.
09-29-2014, 02:17 PM   #52
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I felt the same way about my catheter, didn't want it removed because going to the toilet was such a pain. But they want them out as soon as possible, because the longer they are in, the more chance there will be nerve damage, and they also increase the risk for urinary tract infections. I noticed the same thing with the TPN - I never thought I could pee so much!
02-10-2015, 05:49 AM   #53
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you aren't alone. It's normal for you to have the ex - the divorce on the mind - it's what's going on in your life.

step back though - you have a teen - if she were going through your situation - what advice would you offer?

What would you say to her - to keep her spirits up - to remind her that she is AWESOME, she's STRONG, she doesn't need anyone to parttime be in her life when things are good and then bail when things are bad.

The best revenge is healthy living. Go to the gym. Go to church and do some volunteer work - don't let your ex take any more space up in your head, your heart, your life. He doesn't deserve your energy - you deserve your energy, and so does your daughter.

Last edited by mamagus; 02-14-2015 at 06:58 AM. Reason: to make it better
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