I'm New to this Forum and Scared

Although I cannot relate to the colonic inertia aspect of your difficulties I can relate to the not having a normal life from day to day.  I am 24 years old and I just had a total colectomy to relieve me of symptoms of Ulcerative Colitis.  I tried every drug and treatment possible (except Remicade because my body wouldn't tolerate it) so i understand the frustration of having no relief.  For me surgery was the only option the would allow me to get my life back without battling my symptoms or being stuck on prednisone for months on end.

I just had surgery about 4 weeks ago and although having a bag took some getting used to it's really not that big of a deal.  Even though I am still in discomfort from the surgery (it takes about 2 months to really recover) I am not experiencing any of my Colitis symptoms.  So I know even now that this surgery was the right decision for me.  And believe me when you know, you know....make sure you talk to your doctors and educate yourself as much as possible so you know what to expect after the surgery.  Look at it this way, you are pretty much miserable every day right now and feeling out of control, right?  This surgery could give you a quality of life you haven't experienced in quite some time and unless you tell people you've had the surgery I'll bet they wouldn't even notice.  You'll be able to have one set of clothes and no bloated stomach! 

This forum is great for support.  It really helped me...I have been frequenting it ever since I knew my surgery date.  I stumbled upon the site and couldn't be happier that I did.  Everyone here is available to answer your questions or simply give you support when you need it.  You are not alone.

Earthgirl

Danielle,

I, too, had j-pouch surgery 5 years ago for ulcerative colitis.  I was sick for several years with chronic diarrhea and wouldn't even consider surgery.  At one point in my illness I was being hospitalized for 9 days on bed rest and no food.  My ninth day there a nurse with a j-pouch came to speak with me about surgery.  Everything I had ever heard about this surgery and its outcome contradicted what the nurse told me.  Long story short, she looked great, was able to work 10 hour days, runs marathons, and lives a full life.  Meeting someone face to face who had suffered as I did and who obviously was healthy convinced me that I needed a surgical consultation.  My GI was not in favor of the j-pouch surgery and I was not in favor of a permanent ileostomy.  I met my surgeon who convinced me I could have a normal healthy life and I signed on for surgery.

I had the surgery and immediately could tell my UC was gone.  Within in a couple months I went camping and 3 months after surgery I traveled through Europe.  I did a half marathon at six months and at 2 years I hiked 200 miles across England.  I am leaving shortly for a 100 mile hike through the mountains of Scotland.  My point is that you will get your life back and begin to experience things that you may not have had an opportunity to since you have struggled with CI for so long.  Your surgery will not be as drastic as the j-pouch and you should lead a much improved life.  The best advice I can give you is to make a consultation with a CR surgeon and ask him/her if they have any CI patients you can speak with.  Talking one on one with patients who have been through this is far more enlightening than any information a doctor can give you.  All my best for your improved health.

Sue

Hi Danielle,

I had a subtotal colectomy, same surgery you are speaking about (removing the colon, and attaching just the very end of small intestine to the rectum).  I had colonic inertia also.  I had my surgery February 2005.  It has been the best thing I could have ever done.  I would recommend to you going back through the old posts named Total Colectomy, there are parts 1-10.  Very long, but trust me, lost of information in there-  AND lots of good, caring people too.  Good luck with everything, ask any questions you want.  My email address is [email protected] if you want to email me directly. 

Good LUck,

Somer

 Hello!  Danielle

I, too, battled chronic constipating (colonic inertia) for 20 years.  I am 41 years old and after battling this disease for 20 years through the use of laxative (which stopped working 10 years ago) and daily enemas (that also stopped working after 2 years), a colectal surgeon was recommended to me by a friend of my husband, who had colon cancer.  Just the though of never having to use laxatives or give myself an enema was GREAT!  But the possible outcome of having a open surgery, blood transfusions, an ileostomy just flew right by me.  All I heard from the surgeons lips were you will never have to do what you did to go to the bathroom again.  You might have 7 to 8 BMs a day, but in time, it will cease to approximately 2 times a day although everyone is different.  I had all the appropriate tests completed and the results were either live with what I had been doing to myself which was a slow death in process or have a subtotal colostomy.  With the support of my husband, my daughter, and family, I decided to take the chance especially being that my surgeon was the best in his field and plus I trusted him.  Although I did end up with an ileostomy for approximately three months in addition to various admissions after my initial surgery for a PicLine to be inserted into my right arm for TPN 14 hours a day feedings to gain the appropriate weight to have my reversal ileostomy.  I was definitely scared and depressed until the day of my reversal.  Before I had my reversal ileostomy on 12/20/05 when I wasn't taking a nap, I was crying.  I could not believe that my first surgery took 9 1/2 hours for a laposcopic subtotal colectomy and a morphine drip.  I did not learn that I had "THE BAG" until day four of my hospital stay.  The second day in the hospital, I had internal bleeding (clots around my right kidney) when they had to do open surgery and received four blood transfusions in total.  After they took me off the morphine drip, the NG tube came out and so did my recognition of my ileostomy and my stomach which resembled a set of railroad tracks.  On day seven, I was released and came home to my loving family and my gorgeous family pet, Pepper, a six year old pit bull mix.  She took care of me during the day while my husband worked and my daughter attended high school. Every three days a home visiting nurse would come by and check my blood pressure, weight, and my stoma (ostomy wound) and change my PIC Line bandages (must keep them clean and free of infection).  Other than that I would take my Tradimol (sorry about the spelling) and I would sleep until my family came home. My Pepper would give me her paw to pull me up from the sofa and walk along side of me to go to the bathroom and wait until I was done doing my business. Everyday I would cry and cry and say that I will never get this ostomy reversed.  I said a "Novena to Saint Jude" day in and day out.  Plus I had alot of people praying for me, I looked terrible and felt horrible and hoped that there was a light at the end of the tunnel on getting better.  Low and behold I had my reversal four days before Christmas, everything did not go well at first.  They gave me a private room for recovery this time.  My second and third day were hell.  I was vomiting the stuff that was built up in my stomach and one of the nurses found me on the bathroom with one of the bed pads kneeling on the bathroom floor covered in vomit. My surgeon's tech assistant during the surgery came in and said I need the NG tube again and that was painful trying to get it in.  I cried and vomited more.  I requested the tech assistant to stop and let me be. He left with the nurses and the minute he walked out the door, I vomited 500 liters of brown crap from my stomach in which he put me back on IV meds.  The next (third) day my surgeon came in and said either we put the NG tube back in or you will have to have another surgery.  The second he walked out of the room, I had my first BM but it was all blood.  A few hours later, I had a BM and they kept me on fluids until my discharge.  I was glad I got better because my body could not take another surgery after having a total of 23 1/2 hours for three surgeries.  Christmas Day was GREAT being home with my family yet I slept most of the day away.  Here I it is 4 months since my reversal ileostomy and I had obstacles to overcome such as a sore and irriated bum, loss of weight, loss of hair, insomia, still depressed hoping that I will get better especially after reading the different forums here.  I must be patient and remember to keep a food journal and note what happens after you eat or drink something. 

Keep you chin up and weigh the advantages and disadvantages of having this surgery.  Remember, you and only you are the one that must live with this condition and you and only you can make the decision to have this surgery.  Sure your condition may have an effect on those around you, but be sure about what you want to do ask questions and get more than two opinions.  Good Luck!  And TAKE CARE OF YOURSELF!

Hello!  Mom

The second day after my reversal ileostomy, everything seemed to be going great until mid afternoon, I started throwing up brown stuff accompanied with a terrible headache and throbbing pain where they closed me up.  I thought nothing of it until later that evening when my husband and daughter came down to first (an hour drive) and they brought Subway hoagies.  Unfortunately, the smell of the hoagies was killing me and all I wanted to do is sleep.  I felt bad they only stayed 45 minutes and the minute they walked out the door, I was throwing up so much that I took the throw away padding off my bed and placed it on the bathroom floor near the toliet.  In a matter of seconds, the nurse came in and found me in a fetus position covered in vomit.  She immediately called the doctor and he came in and said we have to place the NG tube back in her tonight.  He tried and tried and it never happened.  So he increased my IV, gave me something for the naseau and an hour later, I vomited all over myself, the bed, the floor approximately 500 liters of fluid (brown).  The next day my surgeon came in, said it is Day 3 still no BM.  He said the tube must go in or else.  He let his chief resident give it a try.  SHe was so compassionate numbed my throat and nose then tried.  No dice.  I was totally upset and scared. Now my surgeon will have to insert the tube.  15 minutes later - I had my first bowel movement filled with backed up blood resembled a placenta (afterbirth).  Two hours later, I pooped.  I was thrilled to death that everything finally worked out although they kept me on a restricted diet for three weeks.  Mostly fluids at first.

I ended up with a temporary ileostomy because I had a leak with some air pockets that they wanted to give my small intestine and rectum heal appropriately.

Well, I hope I did not bore you.  The best of luck to you on Monday. 

Stormy,

I had my surgery Feb 2005.  I did not have a temporary pouch or ileostomy.  They reconnected me.  I was in the hospital for 6 days.  Stayed at home 2 weeks, then went back to work full-time.  My husband was sort of "against" the surgery, it seemed drastic to him.  Now, he is very glad that I had it and sees how much I feel better. 

~Somer

Just FYI.  That stuff is the devil! 

~Somer