New and Getting Surgery - Advice Please

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Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 1:10 PM (GMT -7)   
Hi, I was dx in 2004 with Crohns and after a low dose of pred over a series of 5 weeks, I went into a remisson that lasted for over 2 years. We had our 4 child - I am 35. She just turned 1 this week. I breastfed her up to this week. Over the last few weeks due to stress, my crohns w/constipation decided it wanted to flare. My Crohns is where the small bowel meets with the large. Well after lovely painful attacks, I had a CT Scan (which because of the narrowing - my god almost killed me) - the dr put me pred at 60 mg a day, but because of my baby being bfed and getting very sick (nothing to do the with pred)- the dose was lowered to 40 so I could wean and keep her out of the hospital. Well, the pain became worst and the blockage narrowed - due to scar tissue they think and I had another attack (you know the throwing up everything) - the dr put me on only liquids and now - back to 60 mg - (baby is weaned and healthy now). I had a small bowel follow thru - it took 7 1/2 hours for it to get to large colon. The dr has advised surgery as soon as possible. Because he feels this will give me a better quality of life instead of going into the hospital hoping that IV steriods help. He believes that this will keep recurring every few months and with me being active mom who wants more children, he feels that meds are not just the answer that Surgery would be the best situation. I am currently on liquids only (god I hate ensure) and no bowel movement (have small gas) in 12 days - I have pain meds for the cramps when they come and still taking 60 mgs of pred. I lost 20 pounds over the last few months. I am very thin right now. I truly miss my rear end. It looks like Tuesday is when the surgery is.
 
Has anyone had this surgery? What can I expect? I am worried.
 
Thank you so much!
 
 
 

kristines
Regular Member


Date Joined Aug 2004
Total Posts : 245
   Posted 10/5/2007 1:35 PM (GMT -7)   
I have had that exact problem and had surgery on Sept 3rd. It was no big deal, that surprised me. I was in the hospital for 6 days, they removed about a foot of intestine, and the pain was minimal. I went back to work 2 weeks after, I do have a non physical job. I feel way better, can eat anything, and no pain. The scar was ugly, it is getting a better though. I think you will be happy when it is done and over with. Best wishes
Kristine
Live, Laugh, and Love!!


Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 2:25 PM (GMT -7)   
Oh Thank you so much Kristine. I have a non physical job as well thank god. - But I do have 4 kids. I can't wait to feel better and not be in pain and be able to EAT! Where is the scar?

Deana

Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 3:10 PM (GMT -7)   
Kristine, when were you able to eat after surgery? Does your bowels work right now? Did you go to bathroom all the time? How has things change? are you on Meds? I am so sorry about so many questions, I am just scared.

Deana

asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 10/5/2007 4:32 PM (GMT -7)   
Supermomof4, you'll be glad you did it. You'll feel alot better. Although it took me 6 weeks to go back to work. Everyone is different, you'll know when your ready to get back to work. Goodluck.

Steve

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/5/2007 6:16 PM (GMT -7)   
I have had two open resections. I was in the hospital about 10 days for each of them. I was in about 3 days longer than most are because each time I got an infection in my incision. I was also out of work for 8 weeks each time. My one tip to you would be walk as much as you can as soon as you can. Also use a pillow on your belly when you are trying to get up or to hold against you for support. Hopefully you will only have to have the laparoscopy surgery vs the open. I never had it that way, but I have heard the recovery is much easier. You will have some diarrhea for a bit as your bowels adapt after the surgery. But for most, it gets better within time. Most feel so much better after surgery. They are able to get back on to living their lives. I hope the surgery provides you with a long, long remission. Good luck and God Bless.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 6:35 PM (GMT -7)   
Thank you so much! How long does surgery takes? Is it several hours?

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/5/2007 7:16 PM (GMT -7)   
Supermom,

I haven't had surgery, but just wanted to say good luck -- I hope everything goes well for you!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!


Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 7:29 PM (GMT -7)   
Oh Thank you - it is so nice to have a place where you can share your fears, hopes, happiness and experiences. Crohns has been such a journey for me and my family. I am praying that this will stop the pain and off and on cycles of being sick and allow me to be the mom I love to be.

Deana

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/5/2007 7:47 PM (GMT -7)   
So for the two years you thought you were in remission, the doc didn't have you on maintenance meds?
 
If so, then what is his plan for maintenance meds after the surgery is done?
 

Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/5/2007 8:37 PM (GMT -7)   
I had no pain. I felt great. I ate what I wanted within reason. I eat very healthy. Low fiber etc. I lived my life - taking liquid vits and minerals, iron, exercising, working, taking care of my family. We got pregnant by surprise in Feb 06 - I was on steriods for 5 weeks 15 to 20 mg the end of summer of 05 during that terrible flare. I had the all signs during that flare - joints pains, low iron etc. I had tried Colozol (sp) when I was first dx in Dec 2004 - I was on it a week - it made me worst. I stop taking it.
So when the steriod kicked started the healing process - it was long road but I was determine to get healthy. I did do the SCD Diet and modified diet during the begining of that healing process of that flare. It helped so much. I gained the weight I lost. Life was great.

I was high risk pregnancy due to history of preterm labor. I had 2 stomach flu durning the pregnancy. No Crohns - I was given progestrone shots after 17 weeks to prevent preterm labor. Some say it works to put IBD into remisson. I am not sure. But I felt amazing. After I gave birth - I worried that I would have a flare. I had nothing. I breastfed my baby all the way until last week - her first birthday. I just could donot it anymore - I am so thin now. I lost so much weight. I am 5 ft 8 and dropped 20 pounds - I am about 110. I started noticing some problems in June - I ate a high fiber muffin by accident. I have Crohnsw/C so I knew that was a big mistake. I started to try to get control on this by doing what did last time but I had no joint pains or any thing else. Just cramps and pain, vomiting, then the fever came - then I knew right before the CT Scan it was bad when the night sweats from hell came. Because I was nursing it made it difficult and made it worst. I was giving the baby everything.
But then really what set me off was stress. I have 4 children home this summer(13 year old hormonal teenage girl - my oldest) and working, lots of stress and when I would feel bad I would rest and as soon as the pain went away - I was back running hundred miles hours again. Supermom. Life was so stressful I had no time to take of myself. Then it took so long to get into the drs etc and get the tests etc. By the time I had the CT Scan which almost killed me - the 3 weeks ago - I knew that surgery might happen. My GI put me pred - it took the inflammation down but I am still so narrow that nothing is really getting thru.

My GI is wonderful, he feels that after the surgery - we are going to take it day by day and if I need meds I will be put on them. He wants me off the pred after surgery. He doesn't like to put patients on pred until he has too. He knows my crohns is brought on by stress - so we are going for the healthy destressing and then we will see. I do not take meds well. So this has been hard on me.
He will monitor me then see what he wants to do. He feels there are many ways we can handle this - there are meds that he believes are much safer with less side effects. But I have to get thru the surgery first.

Deana

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/6/2007 6:36 AM (GMT -7)   
definitely look into maintenance meds after the surgery. You want to stay healthy for as long as you can for all those kids ;0) I never had maintenance meds before and was just put on 6MP, I sure hope it works. I've been lucky in the past, my surgeries have given me long periods of remission and if 6MP helps it last longer, that's even better. I'm getting too old for these surgeries.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/6/2007 7:41 PM (GMT -7)   
Thank you Judy! I am so looking forward to surgery now. I am so tired of a liquid diet, being weak, cramping etc. I can't wait to be back to normal AND EAT! I WANT FOOD SOOOOOOOOOOOO BAD! I just have to get thru this weekend. Do you know how long the surgery takes? What it going to be like afterwards?

Deana

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 10/6/2007 7:53 PM (GMT -7)   
Wow- Well Good Luck!! I have not had surgery yet but do have severe Crohn's and sorta sound like you. I am on my last resort basically and that is HUMIRA. No surgery will help my Crohn's due to it being in my colon and many other places. So gosh, I hope it works for you at least. Staying feeling good after is important so as said above find some good maintenance medications after as you want this to be a long term thing. Quality of Life! and being healthy (healthier at least) is really the goal here with Crohn's, right? Take care of yourself starting now. I am sure a lot of foods (or some foods) will still bother your stomach. Hope you get off of the steroids soon too and get back to living life. I would love to hear how surgery goes for you, how you feel, etc.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/7/2007 11:11 AM (GMT -7)   
The surgery can take an hour and a half or many hours depending on what they run into in there. I think they usually schedule 1 1/2 - 2 hour time slots but the time could go much faster or slower for so many reasons. I hope you have a speedy recovery from your surgery and a long, long remission. Have fun eating again, I'm on a kick now where I can't get enough salads, I have to try them all, lol.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


JSG
Regular Member


Date Joined May 2005
Total Posts : 24
   Posted 10/7/2007 12:57 PM (GMT -7)   
supermom- I am 1 week out of resection surgery at the exact same site as you will be having.  I think I lost about 4 inches.  One good thing about planned surgery is that you will have time to get your colon well cleaned out.  The doctors told me that surgery goes much better the more cleaned out you are.  The more material that is in your colon makes the surgery riskier.  I was well cleaned out at the time of my surgery and it went as well as it possibly could have.  The doctor told me that surgery would last 1-2 hours depending on what they found when they got in there.  Mine lasted for 1 hour and I was in recovery for about an hour and a half.  I stayed in the hospital for 5 days after surgery.  The first 48 hours were the worst.  I had a catheter in and stayed in bed.  I had a button that I pushed for pain.  The doctors advised me to use it as little as possible because it doesn't do much for bowel healing.  Once my bowel started making sounds I could have ice chips and small sips of water.  That's all I was able to have until I passed gas.  Once I passed gas they put me on a liquid diet.  It took a couple days before I passed gas and was able to get on a liquid diet.  I've now been home for a couple of days and I still don't have a normal appetite, but I'm eating a bland diet.  My stools are watery and black.  It seemed like it took forever for me to have a stool afterwards and then once they started coming they came all the time.  But today is the first day where I don't feel like I have to have diarrhea all the time.  I feel like I'm healing pretty well.  I'm weak, and I plan on taking another week off of work, but I'm going to go back to work on a restricted basis (I have an active job) in another week (two weeks after surgery) as long as it's okay with my doctor.  My follow up where I get my staples out is Thursday.  I had an open surgery where they make a big long incision, but I was lucky in that my incision is only from my belly button down. 

Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/7/2007 1:31 PM (GMT -7)   
Oh my. My bowels have been block for awhile. There is no clean out because there is very little openning. I am thin. My stomach is bloated and I have only been able to pass gas for almost 2 weeks. But I have been on a liguid diet for 2 weeks now. I am so done. Tomorrow I meet with the dr at 3 and then either I will be put in the hospital that night or tuesday morning. How long was it before you could walk around?

JSG
Regular Member


Date Joined May 2005
Total Posts : 24
   Posted 10/7/2007 2:38 PM (GMT -7)   
I had my surgery at 10pm and they got me up out of bed the first day.  They wanted me up walking around as much as possible.  By day two they were asking me to walk around the hospital floor at least 4 times a day which was hard at first.  I did too much on day two and slept almost all of day 3.  Take it easy when you aren't being forced to walk around.  Walking really did make me feel better, but my big milestones were getting the catheter out, getting off the oxygen, and getting my IV out. 

Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/24/2007 6:33 AM (GMT -7)   
I wanted to update you all on my surgery. On Monday night October 8th - day before the schedule surgery I went into failure and was rushed to the ER. They did not think I was going to make it. They stablized me and did the surgery early Tuesday morning. I had 6 inches of my small bowel taken out plus 17ml of fluid, part of large intestine and reconnected. 22 staples, IV in my neck and the lovely tube down my nose - it was an experience of a lifetime. I was sitting up the first day, walked 1 mile the second, (stopped all pain meds on the second day), 1 1/2 mile the third day, 2 1/2 miles the 4th day etc. I was able to come home without my staples on Monday October 15. I know it sounds stupid but I cried with joy with my first bowel movement - I had not had a bowel movement prior to that for almost 3 weeks. I feel amazing. I can eat what I want - but I am very careful. I am now on 5 mgs of preg for the next 3 days then off all meds. It has been 3 weeks now. I am 6 pounds heavier Yea! My scar is healing nicely. I think the worst was the IV in my neck and the tube down my nose. My Dr was awesome. I feel so blessed!

Thank you so much for all your support!


Deana

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/24/2007 7:30 AM (GMT -7)   
Hi Deana So happy the surgery is over for you and you are doing OK.I would have cried too . Glad you are able to eat and hope the family is doing well. Hope you get your strenth back and take it easy for awhile I just was happy to get the dishes done and the floor when I was recuperating . Wishing the Best for you .lol gail

Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/24/2007 1:03 PM (GMT -7)   
Thank you gail,

Today I drove for the first time in over a month. I felt free LOL. Thank god for the help of the children, parents, my husband and friends, my house is not tooooooo bad yet. But I have 5 more weeks before my dr will let me do real activity. I am trying to take it easy - it is so hard because I have not felt this good in so long. Being on a liquid diet and have a blockage for 3 weeks is a killer (really!). It is so scary to realized how bad I was before the surgery.

Deana

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/24/2007 1:11 PM (GMT -7)   
So glad to hear your surgery went well and you are feeling so well. Do take it easy, remember you have just had major surgery. Try keeping a food diary and see how different foods effect you. It is nice to eat again, isn't it???? Here's to a long long remission for you.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 10/26/2007 8:19 PM (GMT -7)   
I am editing out all of this person's posts. Spammers come out on the weekends. Is it a full moon? ~~ Ides
I may be new here, but I know spam when I smell it. Every one of "tcallus" posts has been this exact same one. This person needs to be banned, and an IP ban as well.
 
Surely everyone that comes here is not dumb enough to believe such drivel as this.

Driver37
Regular Member


Date Joined Jun 2007
Total Posts : 93
   Posted 10/28/2007 5:55 PM (GMT -7)   
Good to hear you're doing so much better. I'm going to have a resection, in the same place, within a week or so. Mine is due to a fistula which has not healed properly.

I'm curious, does anyone here know of any links to a video of an open colon resection. I found plenty of links of videos of laproscpopic resections but none of open. My surgeon said he was going to do as much laproscopically as possible, but it sounded like he'd be opening me up in the end.

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/28/2007 6:55 PM (GMT -7)   
Deana,

Glad you're feeling better!
Wishing you a smooth recovery ... take it easy, and enjoy eating!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004, taking Synthroid) and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.

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