First, I would like to give props to my fabulous husband for coming up with the name of my jpouch story. It isn’t quite as cool as ‘No colon and still rollin’ but still kind of catchy! This is just one more thing my supportive partner does to rock my colon-less world!
My initial journey with “Colin theColon” began in late 2005 when I relocated to the west coast and a new doctor diagnosed me as having a gluten allergy after I complained of frequent digestive problems and extreme fatigue. For the next two years I changed my diet drastically but saw minimal to no improvement in my digestion and became more and more fatigued. Fast forward to fall 2007 when I could no longer dismiss my GI symptoms and fatigue as food allergies as I started to bleed with each bowel movement, experienced constant diarrhea, lost weight rapidly, and had trouble with nausea and vomiting. I finally got a referral to a GI specialist who put me inpatient at a localOaklandhospital while I waited for a colonoscopy. The pathology came back as moderate pan colitis. I hadn’t really done much research on the disease as we were early in the diagnostic process; however, I was told that with medication and dietary modifications, I would be fine and live a normal life. Perfect – I could pop a few pills a day and all these terrible symptoms would go away. If only that were the case.
First came the steroids, iron infusions, and Asacol which actually made my symptoms worse. Then I tried just high-dose steroids but every time I tried to taper I got sick again. Then came 6 MP which induced horrible nausea and vomiting which made me lose even more weight, thus I had to stop this drug. Finally, I tried Remicade which, despite doubling the dosage, my colitis refused to respond. Humara became the final option but my medical team decided it was too risky due to a latex allergy and the cap on the drug injections had latex. I was out of options, scared, sick, and had lost all quality of life. I was 25-years old.
Hank the stoma. I had an end iliostomy as i was too ill to construct the Jpouch during the first surgery.
I was hospitalized end of October, 2008 for another flare that my doctors couldn’t get under control and another colonoscopy revealed that my disease had progressed to severe pan-colitis. I always knew surgery was probably eminent but it appeared that the time had come. I was transferred to University of California San Francisco Medical Center where my GI recommended the surgical team under Dr. Varma. OnNov 19, 2008I underwent a laparoscopic subtotal colectomy with ileostomy. I was too sick at the time to do the jpouch construction so I just had my colon removed but my rectum remained for the next surgery. I was in the hospital 3 weeks prior to the colectomy gaining strength through TPN therapy and then an additional week post surgery. I went home 30 pounds lighter but thrilled to finally be free of this disease.
Obviously adjusting to life with an ileostomy has its ups and downs. I think it is harder for females as we are prone to have body image problems. I am usually not one to have problems with this sort of thing but the first time I looked down at my ileostomy I cried
Allergic Reaction to the iliostomy bag. I tried multiple brands of bags but reacted to each. Ulitmately i needed a perscription for steriod spray and used Duoderm as a barrier between my skin and appliance.
my eyes out. I think I cried for loosing an organ (given it was a bad organ but still an organ none-the-less), I cried for all the life that had been already taken. I cried because my hair fell out and I had bald spots. I cried because I was a newlywed and this wasn’t supposed to happen. Obviously there was some crying but eventually I adapted and settled in to life with the ileostomy. Besides having some severe contact dermatitis (as I am allergic to everything) my stoma did its job well for 13 weeks. I only had one problem with blockage but that alleviated itself with time. The dermatitis did cause numerous leaks but again this was something that I could deal with.
The 13 weeks between surgery passed quickly and my health drastically improved and I actually felt alive again. I put on 15 pounds; once again had energy to walk my dog, and bedtime was no longer9 PM. It was amazing to once again feel like I had control over my body. I know that if something happens with my Jpouch, I can always go back to having an iliostomy and life will be fine.
During the period of time between my first and second surgery, my husband and I got a consult to learn more about the fertility issues we had read about as a result of Jpouch surgeries. My surgeon indicated that my fertility would be drastically reduced as a result of these surgeries, but didn’t go into the specifics so we wanted more information as we had always hoped that children would be in our future.
I was referred to Dr. Mahadevan at UCSF GI department who does research in the area of fertility, IBD, and Jpouches. Perfect! We learned that I would have between a 50-80% less likelihood of natural conception as a result of adhesions from my surgeries. We should try to conceive naturally for 6 months, however, if we remain unsuccessful, we will have to pursue IVF. Often jpouchers get pregnant with only 1 round of IVF since the issue isn’t with our eggs but the scar tissue which inhibits fertilization. Once pregnant, I will be able to carry full term however I will be considered high risk and therefore be under the care of a specialist. Also, it is highly recommended that I deliver via c-section to eliminate the risk of pouch tearing during vaginal birth. For my c-section, the surgeon will be able to use the same bikini incision as the jpouch surgery which will eliminate further scaring. The likelihood of passing on ulcerative colitis to our child will only be 2-4% which was also comforting news. I highly recommend any young females, who are considering this surgery, to consult with someone about fertility before getting the jpouch. Knowledge is power and it is good to know what options exist.
Surgical wounds immediately post-op. I had a drain coming out of my iliostomy site, a jp drain on the right (red) that was draining blood from jpouch, and the open scar across my bikini line.
On Feb 24 th, 2009I had my jpouch created and my takedown done in one step again by Dr. Varma at UCSF. At the time of surgery, Dr. Varma did not know whether I would need another ileostomy or not. Fortunately, she was able to do all the remaining surgical work in one step; however, this meant a bigger recovery both in terms of hospital stay and recovery at home. The surgery went well and lasted about 2.5 hours. I then spent an additional couple of hours in recovery before going to my room. Again, it was nice to have things be familiar. I even had one of my favorite nurses from my first surgery as my main nurse during the recovery.
I spent a total of 16 days in the hospital recovering from the Jpouch surgery. I was told to anticipate a stay between 7-10 days, however, my body tends to heal more slowly due to my steroid use and I did have a few complications that posed some setbacks. The first few days of recovery went pretty smoothly and I was in less pain than I had anticipated due to the PCA pump. On the second day the nurses had me up and walking, although, I only made it to the entrance of my room before having to turn back. The next few days were more challenging as my guts refused to wake up despite my strongest pleads. I went for a CT scan that showed no leaks or abscesses so they diagnosed me as having a post-operative ileus which basically means an extended period of time where the intestines don’t wake up. My medical team informed me this occurs in about 25% of patients.
Ginger, my favorite resident at UCSF, checking on my NG tube. This tube isn' t fun but will make you feel a lot better if you have an ileus.
As a result of the guts not waking up and the liver continuing to produce bile, severe
Belly post-op day 8. As a result of the ileus, my belly has become hard and distended.
nausea and vomiting often occur – as it did in my case. Throwing up every 30 minutes is never fun but especially after you have just had open surgery and with every wave of nausea you feel like you are ripping open your insides. At 3:00 AMone night the nurses put in an NG tube which is a tube that is thread down your nose through the back of your throat and into your stomach which then suctions up fluids. The tube is rather uncomfortable going in (request nose and throat numbing spray if you need to have this done!) but once it is in place, I immediately felt better as large quantities of bile left my body.
Another problem with the intestines not waking up is the inability to release gas or stool from your newly formed pouch. In my case as the pouch was constructed and immediately put to use, my doctors didn’t want to let things build up and stretch the pouch so I had to have the pouch intibated multiple times per day. Basically this entails having a catheter placed up your bottom into the pouch and it is left to drain into a foley urine bag for about 30 minutes at a time. As I was unable to pass gas, I immediately felt better after this was done as it released all the gas that was built up in my pouch. I had no idea how painful gas pains could be until I experienced this ileus. I was told to avoid pain medications as they just further slow down the bowel and narcotics don’t work on this type of pain. The only things that provided relief from the gas pains were heat packs on my stomach, walking, and intibating the pouch.
14 days later the ileus finally resolved itself but I was still only having about 5 bowel movements per day therefore I continued to have to have the pouch intibated and would continue to do this at home for the first week. Now I am six weeks post-op, have been given a clean bill of health from my surgeon, and can have bowel movements without the aide of the catheter. The first four weeks I was told to follow a low fiber, soft diet which I didn’t mind as I could tolerate more foods than when I had ulcerative colitis. Now I have been given the liberty to expand my diet however I was told to take it slow as some foods will obviously cause irritation.
In terms of bowel movements, I go between 8-10 times a day which includes 1-2 bowel movements at night. I am just starting to experiment with Immodium and Lomotil so I hope that this slows things down a bit. At this point I am having relatively formed bowel movements so I was instructed to stay away from the fiber as that may actually cause difficulty emptying the pouch.
In the coming weeks, I remain hopeful that my strength and energy will return as I still struggle with fatigue . I nap every afternoon for a couple of hours and get tired after simple outings such as going to the grocery store. My surgeon says all this is normal, especially with a combined 2nd and 3rd step; the body just needs time to heal. Even though it has been a bit of a rocky road to recovery, I have no regrets regarding my decision to get a j pouch. Even now at 6 weeks post-op, I have more quality of life than I did with ulcerative colitis and I know things will just continue to improve. Thanks for letting me share my story and I wish anyone about to go through these surgeries the best of luck in their recovery!
Wounds 6 weeks post-op. The iliostomy is completed closed as of yesterday! Still have the outline where my bag sat and puffiness in the belly.
This profile pic you can see the bump above my old ilio site. The surgeon says in time, and with some abdominal/core work, this should go away.