The Harger Family

First of all, let me tell you what ulcerative colitis is NOT.... UC is NOT a stress related disease. It is not like stomach ulcers. What UC is is an auto-immune disease. (Other diseases in this category are Multiple Sclerosis, Rheumatoid Arthritis, Lupus, and Crohn's Disease.) With this disease, your body's immune system thinks your colon is a foreign body and should not be there. It attacks it and causes lesions inside on the lining of the colon. The lesions produce mucous/puss and bleed. This causes fever, stomach cramps, nausea and vomiting, and diarrhea.

II. What is the typical treatment for Ulcerative Colitis?

Medicinal treatment of UC usually includes cortico-steroids (Prednisone) to get the attack under control, then drug therapy to try to keep the disease in remission. Some of these typical drugs are Asacol, Pentasa, and Rowasa. I, however, was allergic to these drugs. I was given what is call a 6MP drug, Purinethol. It is basically a chemotherapy drug, but for UC, it is given in MUCH lower doses. It makes you anemic and tired, and it can cause pancreatitis in some cases (very rare).

I was put on Prednisone and Purinethol for about a year and a half. My colitis would NOT go into remission and the drugs were starting to be less effective. I had gained 30 pounds from the steroids, was anemic, and constantly exhausted. It was very common for me to make repetitive trips to the Emergency Room for uncontrollable vomiting. My husband and I decided surgery was our only option. We had originally scheduled the surgery for the summer of 1999. However, late November 1998, it became very clear that my colitis was not going to wait till May. My surgery was rescheduled to February 1, 1999.

III. What is a J-Pouch surgery?

This surgery is also called the Ileal-Pouch Anal Anastomosis, or the J-Pouch. During this surgery (sometimes done in 1 step, usually 2, and often 3 surgeries when the patient is malnourished or extremely weak), my surgeon (Dr. Jose Dominguez) removed my diseased colon. Then he pulled down my small intestine, looped the end, split and sewed the end section to create a pouch, and attached that to my rectal muscles.  He then looped over my small intestine higher up and made a temporary ileostomy to use while my pouch healed.

During the second surgery, Dr. Dominguez closed up the hole in my intestine from the ileostomy, then closed up the wound on my stomach. The second surgery is quick, but there was more recovery pain afterward, in my opinion.

IV. Support System.

I will tell you this first...ANYONE considering having this surgery...make sure you have a support system there when you go into surgery. I would never had made it through this without my family and church. Both of my parents came down for the week of my first surgery. Due to my father's job, he had to return home a week later. My mother stayed behind for another 4 weeks to help Kevin at home and to be there with me in the hospital while Kevin was at work and school. Our church's pastoral staff was at the hospital constantly. Our special thanks to Pastor Creps who met us at the Emergency Room EVERY time I returned during those 4 weeks with the 5 bowel obstructions, no matter what time of day or night it was.

V. What should you expect?

I had my first surgery at 7:00 a.m. Monday, February 1, 1999. It was a 4 hour surgery. I had an inscision from about 3 inches above my belly-button all the way down my stomach (25 staples). And I woke up with an ileostomy on the right side of my stomach. It was a slow recovery. Sitting up the first time was painful (praise the Lord for Demoral!) and very difficult. After all, they have just sliced your stomach muscles in two and sewn them back together...it's gonna hurt. Also, they don't tell you this, so I will. When they remove your JP drain (a JP drain drains the fluid from the wound inside), it is going to hurt pretty bad. It will only hurt when the pull it out, though. The pain is gone within a couple minutes of the removal, and the removal only takes about one minute. Tip: Get a shot of Demoral about 20-30 minutes before this procedure is done by the nurse. It took me 12 days to recover from the first surgery.

The second surgery was 7:00 a.m Monday, March 15, 1999. It was a 30 minute surgery. Dr. Dominguez closed my ileostomy and stapled the incision in the middle. He wanted the wound to heal from the inside out to prevent infection. The wound was packed with gauze and had to be changed and repacked three times a day. Here's a couple of tips for this: (WARNING- there's no way around this...this will hurt.) 1. get a Demoral shot about 15-20 minutes before the nurse will change your dressing, and 2. soak the gauze for about 10 minutes before it is pulled out. It will loosen up the packing and it won't sting as bad. It took 10 days for my wound to heal enough to not need packing. I was in the hospital for 5 days after my surgery, then went home.

Before my surgeries when my UC was so bad, it was not uncommon for me to have 15-20 bowel movements a day. I am now past one year since the surgeries, and I usually only go to the bathroom 3 times a day now.

VI. What are some possible complications?

I guess the first one would be that the small intestines wouldn't reach far enough to create the pouch. In this case, the patient would have a permanent ileostomy. My surgeon said this rarely happens. He told my husband he could have gone all the way down to my knees and back with my small intestine, so it wasn't a problem with me.

Another is called an "illeus". This is a sleepy bowel. Any surgery on the digestive tract can cause this. I got one and had it for about 6 days. It is painful! In my case, my bowel would not wake up, so I had gas build up for a week. This caused extreme pressure and pain.  Pain killers don't work real well on gas pain, and they also slow the bowel down even more. Walking can help wake the bowel up, though.  I can't tell you how many miles I put on my IV pole! But it goes away eventually.

Another, and the one I am most familiar with, is bowel obstructions. I had, unbeknownst to the surgeon, gotten a twist in my small intestine right above the ileostomy opening which caused EVERYTHING I ate to stop there. From the time I was discharged from the first surgery (February 12th), to when I had the second surgery (March 15th), I had 5 bowel obstructions. This caused me to continually be readmitted to the hospital.  I was never home more than one or two days each time, really.  In essence, I was in the hospital for 7 weeks, all together. My surgeon prefers to wait for at least 8 weeks between surgeries. I had mine at 6 weeks (2 weeks early) to fix the twist.

Pouchitis is another complications many face.   I have been lucky enough to not have experienced this so far.  Pouchitis is an inflammation in the pelvic pouch.  It is caused by a buildup of bacteria in the pouch, usually from not evacuating the pouch completely when you go to the bathroom.   The symptoms resemble the all-too-familiar colitis attacks one had before the surgeries, though not as severe.  Usually a course of antibiotics will clear up the infection.  Some patients with chronic pouchitis may have to be put on the cortico-steroids again to try to relieve the inflammation.  In severe cases of pouchitis, patients may be given a temporary ileostomy to allow the pouch to heal without being irritated by the waste.   In worst case scenarios, the pouch is removed, leaving the patient with a permanent ileostomy.  This is very uncommon, and usually only about 1-2% of pouch patients ever have to have this done.

VI. What about after the surgeries?

I am one of the lucky ones. My big things were burning for about 2 weeks after the second surgery every time I had a bowel movement. This does go away. Here are some things that can minimize this experience. Get some Charmin Plus with Aloe toilet paper! Get a squirt bottle to rinse with after you go to the bathroom. Get some cream to put on your anal tissue after you have a bowel movement. My surgeon gave me Ferguson 361 Cream. It works GREAT!  Find a doctor that will give you at least some mild pain medication to take during the worst of the burning.

Another big thing was drug withdrawal. This is the thing that bothered me the most. No one warned me about it or would help me with it. I had to go to my regular doctor. I had been on IV Demoral for 7 weeks, Percocet for 2 weeks, and Darvocet for 4 months. By the end of March, I was addicted to pain killers. They don't like to tell you this is a possibility. I don't know why. My general doctor prescribed me anti-anxiety medication to take daily for a few weeks to help me through the withdrawal. I can happily say now, I am through that, off the anti-anxiety meds, and off the pain medication.

Insomnia is another big thing. Major surgery, anesthesia, and the hospital schedule of waking you up every 2 hours for vitals, will destroy your sleep patterns! My general doctor put me on sleeping pills for a few months. I have now gone off of them. You may or may not have to deal with this. However, it isn't life threatening, just an annoyance.

Spasms is another possibility. These are more of a mild irritation than anything else. This is when the peristalsis movement of your small intestines is "stuck" in kind of a quiver. This causes your rectal muscles to stay in a contracted position and makes you feel like you constantly have to go to the bathroom even though you don't need to. I still get these occasionally. My doctor has prescribed me Bentyl, an anti-spasmodic for the intestinal tract. I used to take 1 pill twice a day as needed.  Now, I do not need any unless I have the stomach flu or an intestinal bug.

VII. What can I eat after the surgeries?

Technically, you can eat whatever you want. However, everyone is different. Realistically, there will be things you will just decide aren't worth the pain. In the beginning, I did not eat oranges or drink orange juice. The acid was just too high and burned too much when I would go to the bathroom. Now, it isn't a problem, and I can eat anything I want. Things like chili and taco salad used to give me a little irritation and mild burning from the spices, but not anymore.

VIII. Diet & Drug Therapy.

Imodium is your friend! I took 4 Imodium's a day and occasionally 4 Fibre-Con caplets a day in the beginning (the first year after the surgery). Now, I do not take anything at all.  Some people say Apple Pectin helps reduce the number of bowel movements and firm them up so they aren't so watery.

You may want to try some Gas-X every day too, at least in the beginning. Gas can burn on it's way out. No need to suffer unnecessarily.

IX. Miscellaneous.

This surgery is life changing. If you have any complications, you will feel at times the pain will never end. It will. Also, major surgery can often cause depression. It happened to me. This too will go away, but if it is extreme, talk to your doctor. There are things they can do to help.