New and Getting Surgery - Advice Please

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!

 

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, 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

Thank you so much! How long does surgery takes? Is it several hours?

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

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

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

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.

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?

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

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

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.

Deana,

Glad you're feeling better!
Wishing you a smooth recovery ... take it easy, and enjoy eating!