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Ileostomy Reversal - A Personal View

Hi. My name is Shawn. I go by Shawnee on the internet so less people will mistake me for a male. I am 28 years old and I have Crohn’s Disease. I have fought a painful, scary, roller coaster ride of a battle with this disease and this is my story.

When I was 20 years old, I began experiencing pain in my abdomen, diarrhea and a general feeling of lethargy. I went to my general practitioner who thought it could be my appendix. Got a test - all was fine.

So this doctor referred me to my gynecologist:

Ovarian cysts! Said the gynecologist. Got a test - all was fine.

So the gynecologist referred me to a gastroenterologist:

The G.I. said we needed to “take a look inside”. I wasn’t too keen on the idea, especially after he explained HOW they “take a look inside”. You know the dreaded colonoscopy--which I lovingly refer to now as the “satan-oscopy”. I drank my gallon of Go-Lytley the night before the procedure and went to outpatient surgery the following day for the test. If you have never had this test the worst part is the bowel prep the night before. The test is a breeze - you are in a twilight sleep the whole time with medication they give you intravenously. You won’t remember a thing.

At my follow-up appointment about a week later, the doctor asked me to come into his office. “You have Crohn’s Disease.” I was quiet. Waiting for the “but” I think. The remainder of that visit is a blur to me. I had never even heard the word Crohn’s before. What was wrong with me?!

More tests were scheduled. I was prescribed Prednisone and Asacol.

The following 4 years were a whirl wind of hospital stays, try this medicine--try THAT medicine, go to this doctor - go to THAT doctor. I was sent to Shand’s Teaching Hospital in Gainesville, Florida for almost a month long stay!

Now I should tell you that during ALL this I continued to work as a dining room supervisor at a family style restaurant. I had to work to maintain my insurance coverage. I was also married at the time to a man who had no compassion for me and the fact that I was dealing with all of this. I think he thought all of my problems were in my head. We divorced in 1998.

Meanwhile back in the hospital: I have had more tubes stuck in me than a person should be allowed. I have shed more tears than I ever thought possible. I have had IV’s in my arms, hands, neck and feet. I even went through a period of time where I received TPN feedings though a tube in my chest. Through it ALL, I worked and tried to lead a normal life. I smiled when someone asked me if I had the mumps because my face was swollen from the prednisone. Then I went home and cried.

My life was slipping by me. I was now 24 years old and in the hospital almost every third month with this flare up that would not end.

Then the doctor suggested an ileostomy.

I had heard about ostomies during the course of my experience. But I wanted to avoid “the bag”. I was scared and uninformed.

The doctor understood my fears and said that we could try bowel resection. He sent me to Cleveland Clinic in Fort Lauderdale, Florida to have a surgeon evaluate me and possibly do the surgery. I was a candidate for laproscopic surgery. They would go in and remove some of my diseased colon and reconnect it to the rest of my bowel. But it WAS a possibility that I would wake up with an ostomy so I was marked with a pen the night before surgery, just in case.

When I woke up, I was scared to touch my belly. My hand slowly moved to the area. No bag. But, I had a huge bandage on my abdomen. They had to completely open me up as the surgeon had a difficult time doing the surgery laproscopically. I was in the hospital a total of 10 days.

That was January of 1996.

The rest of that year was full of ups and downs. I felt really good for the first few months after surgery then lots of diarrhea and pain. I was having a flare up, again.

September of 1996, I was tired of giving my life to Crohn’s Disease, doctors and hospitals. I wanted to LIVE again. I talked to the doctor about an ileostomy.

The surgery was scheduled for September 30, 1996. That is the day my life began, again (even though I spent another 2 years with a jerk of a husband!)

The ileostomy took some adjusting to. I was awkward, at first. I called every manufacturer of products I could find and asked for samples. I finally found a product I was happy with.

I went through a period of depression. Normal they say. Of course, the husband thing didn’t help. He grew more and more distant. Finally taking a job that caused him to travel quite a bit.

In June of 1998, the husband left. And so did alot of my stress!

I realized that I was strong. Look at what I had been through!

I met a wonderful guy a at the end of 1998 and we have been together ever since. And YES - I met him when I had an ileostomy!

In 1999 I was feeling great! Just as I had since the ileostomy surgery. I was confidant and comfortable with my appliance. But I couldn’t get out of my mind what it would be like to have a reversal. I began to research the internet.

My main concerns about reversing my ileostomy were:

  1. Do I want to be reversed only for vanity reasons?
  2. Will I be able to hold in my bowel movements?
  3. Will I have a severe sense of urgency?
  4. Will I cause the Crohn’s to flare up if I have surgery?
  5. Am I putting myself at risk in anyway?
Of course, I had many other questions but those were the top five. Regarding the vanity issue: I just had to soul search to be sure that I wasn’t going to have the surgery just to “be rid of the bag” and possibly compromise my health. I mean the four years that I had my ileostomy I was at my healthiest. Not a pain or problem. Should I not fix what ‘aint broke?

I made a list of all my questions and went to see my surgeon. I even brought along my mom so she could ask any questions. The surgeon said that we would have to do a scope of my colon to see exactly how much he would have to work with and make sure it was healthy. He told me that I should do Kegal exercises (squeeze, hold, release the rectal muscles) to help strengthen things “down there”. He explained that the surgery itself could not cause a flare up of Crohn’s. And he told me that I would probably have about 7 bowel movements per day until my body adjusted and then it may go down to three.

The colon scope was scheduled with my GI and done rather quickly. We found out that I had three inches of my colon. THREE INCHES!!??!! Would that be enough?

The surgeon and GI felt that it was enough and they both thought I should give it a go.

My family, on the other hand, were concerned for me. They had seen me go through so much grief with the Crohn’s and I was so well with the ileostomy they wanted me to stay well. Having the surgery left so much unanswered. I had no guarantees.

I decided to do it. Surgery was scheduled for October 26, 2000. With my mother, boyfriend, and roommate at the hospital, I went in for my 2 hour surgery.

When I awoke I put my hand quickly on my abdomen. I could feel a big dressing but no crinkle of an ostomy bag. I did it!

My first few days were rough. And fortunately my surgeon had warned me. My bowels woke up almost immediately and I was having bowel movements by the second day. They were black and watery and I had difficulty holding on to them. I was getting tired of the bed pan, plus it’s hard to maneuver when you have an epidural, so I requested a bedside commode. DO YOURSELF A BIG FAVOR!! - If you are getting a reversal ask for a bedside commode! It saved me!

They allowed me to resume a regular diet by day 3 and I was out by day 5.

The surgeon made an incision from my pelvic bone to just below my belly button. The stoma site was closed shut with internal stitches and external staples. The staples were removed by day 3 and replaced with steri strips which were left on until they fell off.

I was back to my normal self within a month.

Today, I am well. I work with my family in an insurance agency that we own in Melbourne, Florida. I am in a loving, committed relationship with a man who respects me - and is proud of me! And I am proud of myself too!

There is nothing I can’t do! I even went camping on an island - sans bathroom! Just me, a five gallon bucket, a life preserver, and a few critters here and there! I have been on roller coasters, long car trips, ANYTHING!

The main problem I have now is with a thing called...well, butt burn - I don’t think that is the medical term but it will do for now. This is because of the frequent, watery bowel movements irritating the skin around the anus. I apply zinc oxide (Desitin) to the area and this seems to ease the burning. I also take medication, such as lomotil, to slow down the bowel movements. Immodium is also something I keep at hand. I have also become a fan of baby wipes.

I realize that I may have more surgeries at some point in my life. And an ileostomy may be in my future - that’s just the nature of the beast. But I will be grateful for my “break” and hoping for a long, long remission! Of course, a cure would be REALLY nice!

I have found through all of this that it is important to maintain a positive outlook, even when things seem to be bleak. Hold tightly those who are around you and love you - don’t shut them out. Be grateful for their concern and support. And thank God for Charmin toilet paper, especially the Double Roll!

I am available to answer any questions about Crohn’s, ileostomies or reversal surgery. Please feel free to email me directly at merlot@lunacy.us.

Best regards,

Shawn

FOOTNOTE

Update, May 2001

It has been about 7 months since my ileostomy was reversed. In March of this year, I was hospitalized due to severe abdominal pain. My GI did a scope of my colon and small bowel and found that the Crohn's Disease had once again appeared--this time, it was above the area where I was reconnected!

From what I have learned, this is not an uncommon occurance. The probability of having a flare up of Crohn's after resection is great. So, be aware of this when considering reconnection. Talk to your doctor about "maintenance" medication.

I am currently undergoing treatment with Remicade infusions. At this writing, I have had one treatment.

I do not regret the decision I made to be reconnected. I knew that I was taking a chance and that there were no guarantees. I will continue to fight this disease with all that I have!---I guess the ride 'aint over yet!

Stay well!

Shawnee

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If you would like to use any of the images in these pages, please email me to get permission. Thanks.

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