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Hi... I recently underwent one of three (yes, three... I was too sick to have my rectum removed along with my colon in the first surgery.  They didn't think I could handle it) surgeries to get a jpouch.  Because the surgery basically an emergency (they scheduled me for 8 am the next day after they saw me), I didn't get a chance to do any research about the surgery/complications, etc.

I can say following the removal of my colon I'm much happier.  I don't mind the ostomy much, but can't WAIT to be "normal" again (should be by December).  That said, I've got a few questions:

Can you eat normal with your jpouch.  I avoid veggies right now.  Will I still have to when I'm done?

What are possible complications?

Does that awful c-section looking scar fade?  What does the stoma scar look like when that's gone?

Hmm... I'll probably think of more later.

Thanks,

Courtney

 Reply posted for cmorris.

I had a 2 stage jpoch procedure for what first was an urgent procedure.  Then my UC progressed so quickly that by the time I had my first procedure I was infected/toxic.  I had toxic meagcolon from endstage disease.  I was was lucky because the colon and rectum were removed with j poch formation in one sitting.  The loop ileostomy was reversed 4 months later.  My ileostomy obstructed at least 6 times before reversal from non digested vegetables so I cut that out of my diet.  When they reversed my ileostomy they discovered that my fascial opening(where the ostomy comes through the abdominal wall) was the size of a dime.  This was the likely cause of this problem.The constant loose stools and water loss caused multiple kidney stones as well.  Since the ileostomy reversal the only foods I stay away from are fried items. I have not experienced obstructions since.  I do not think that the scars are a big deal but I am a 41 year man.  I think woman are more conscious of this.Just remember where you came from.  I had 30 bloody bm's daily with pain and occasional incontinence, sound familar.I am so grateful for the surgery.I am so happy you are better.Once the jpouch is formed and functionalized  you will finally feel some normalcy.I still have multiple movements 5-7daily and 2-5 nightly, without painblood or leakage.  It has been 18 months since my second surgery and life is good for my wife and 2 girls.  KEEP SMILING,  Kevin

 Reply posted for cmorris.

I kind of went through the same thing as you.  I had to have emergency operation to remove my colon six years ago.  Then I had 2 more surgeries and the 4th operation was for the j-pouch. 

I can pretty much eat everything except for high fiber stuff and I am trying to stay from wheat product because I suspect I may be sensitive to gluten.  A lot of people who have Chrohn disease or ulcerative colitis are sensitive to gluten which is contained in product made with wheat.

I do have a long scar from my belly button down to my vaginal area and another one from where the stoma was.  It might help to rub some cocao butter on it.

The only complication I have is sometimes I get pain around where my rectum used to be or Ill feel uncomfortable around that area if I have to go to the bathroom.  I sometimes take vicadin to deal with the pain.  Also I purchase a bidet toilet which is god-send.  I heard that a lot of Chrohn Disease patients, Ulcerative Colitis patients, & J-pouchers have purchase a bidet-toilet - it really helps.   Good Luck to on your surgery.  I hope it goes well for you.

 Reply posted for cmorris.

Hi Courtney,

I am sorry that you had to have surgery so quickly, but don't worry.  Everything will be so much better without your colon.  I had very severe UC for six years and had to have my entire colon removed.  That was three years ago, and I would never go back to the way it was before.  Of course, living without a colon takes a lot of adjustment, but it is so much better than living with UC.

You will have to be careful at first with what you eat, especially while you have the ileostomy.  Chew everything very well.  Once you have the reversal surgery and you are "normal" again, you will be able to add more and more foods into your diet.  I can eat pretty much anything, but I choose to avoid (or limit the amount I eat) certain foods because of the reactions they cause.  Certain veggies, like broccoli or cucumbers, cause problems.  I mostly stick with cooked veggies over raw ones.  It is basically just trial and error to find out how much you can handle.

I had my jpouch procedure done in two surgeries and the scars have faded as time passed.  The laparoscopic scars are pretty much gone, but the c-section like scar and the ileostomy scar is still visable.  The ileostomy scar can be seen the most, as it is a round spot that had to fill itself in after the reversal.  It isn't nearly as noticable now as is was at first.

The most important thing I have found is to make sure to drink PLENTY of water.  It definitely makes day to day living much easier.  I drink about 70 to 80 ounces a day.  Getting dehydrated is a really bad thing without a colon, and you will be surprised by how quickly it can happen, so drink tons!

I hope that everything goes well with your next two surgeries and that you adjust to the ileostomy okay while you are waiting.  I will tell you that you will feel so much better once you are healed.  I'm sure everything will work out fine for you.

Lauren

 Reply posted for cmorris.

Hey Courtney -  I just had my 1st of 3 J-pouch surgeries as well.  I was on steriods too long.  So the Doctor thought to  help the pouch heal, it would be better if i was completely off steroids for 6 weeks before he created the pouch.  The only way to do that was to remove my colon 1st.  My next surgery is June 27th 

As you stated Im also getting along ok with the ileostomy.  As far as your questions:

I have gradually been adding new stuff.  I tried pretty much everything in a normal garden salad and nothing really has affected too bad.  Other then the color of the output. I have stayed away from popcorn, nuts and seeds. 

As far as the scars. I had mine done laproscopically (sp) so the five small scars I have arent really noticeable and Im only a month past my surgery.  The Dr told me he will actually use the same spots for the 2 and 3rd surgery.

Ryan

 Reply posted for cmorris.

Dear Courtney

It sounds as though you're handling your surgery very well. I'm not sure if it's easier to have it done suddenly, or to have a couple of months to think about it (as I did) but either way, having a good attitude about the results is a very useful thing...

On to your questions regarding IPAA:

Scarring- My scars are fairly insignificant, owing largely to the fact that I'm a guy and have hair to cover them up. That said, even without hair over the scars they're really not all that bold. The ostomy scar is by far the most noticeable as it is a horizontal fold on my right abdomen right above the belt line. I'm told it looks most like an appendicitis surgery scar. The main scar runs right up the midline (17"), but hides very well.

Food- Until just recently I found I could eat pretty much everything with  impunity. Cooked spinach gives me some trouble, and I had an issue with a blockage after eating some raw broccoli, but everything else has been pretty straightforward. I should mention that it turns out I have Crohn's instead of UC, and may well have to moderate my diet as I'm now flaring due to Crohn's.

Sorry to hear that you were so sick. And glad to hear that your colostomy was a big help. And good luck wityh surgeries 2 and 3. And feel free to write if you have any other questions (or I haven't been clear).