4 feet less but still the best: My Jpouch Story

by on Monday, April 6, 2009 17:50
This entry is filed under: Photos
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.

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.

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 the Colon” 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 local Oakland hospital 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.

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. On Nov 19, 2008 I 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.

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 longer 9 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 immediatly 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.

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 24th, 2009 I 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.

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.

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 AM one 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.

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.

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.

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48 Responses to “4 feet less but still the best: My Jpouch Story”

  1. avatar

    Brevin says:

    April 7th, 2009 at 2:22 pm

    What a rockstar! Thanks for sharing your story here.
    I was curious in the family planning aspect of the j-pouch (the c-section recommendation and such), since I wondered how that would affect female patients.
    How is your weight doing currently? You gained weight with the baggy, but did you lose most of it since then? Did you gain any back?


  2. avatar

    venessa says:

    April 7th, 2009 at 5:54 pm

    Feels good to get throught it, doesn’t it! I had my j-pouch done in 1991, and let me tell you, your scar looks great!!! Mine goes straight up my stomach and my ileostomy scar is alot higher. I did have one child 3 years ago with the pouch (c-section) at the age of 33. it took about 14 months to concieve. consider my age though!
    good luck with it all.


  3. avatar

    Jamie says:

    April 7th, 2009 at 7:24 pm

    Hey brevin – unfortunately i lost weight in the hospital even though i was put on TPN when they diangosed the ileus. Since being home however and expanding my diet i have put on about 5 pouds. I am trying to expand my diet to include more fruits and veggies but it is really trial and error at this point.


  4. avatar

    Jamie says:

    April 7th, 2009 at 7:27 pm

    Hi vanessa – great to hear from a jpouch veteran! i love to hear that there are pouches out there that are still doing well after many years of use! Also, so great to hear of your success with your daughter! I hope that i have a similar experience! My husband and i are still amazed how minimal my scars are considering what was done. I give my incredible surgeon a shout out everyday and i am so thankful for the wonders of modern medicine and laproscopic surgery.


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    Peter says:

    May 26th, 2010 at 2:29 pm

    Hey Jamie, its really interesting to hear from someone else who had a one step procedure. Most people on the web have had two step procedures, and I think their recovery is different. After having an ileostomy for over four months, I had my procedure done April 19, almost six weeks ago. Like you, I had similar issues post surgery. It took much longer than they thought for my bowels to “wake up.” I spent three weeks in the hospital. Now I still struggle with the urgency, and am eager to return to normal activities. Thanks for sharing your story! It gives me some more faith.


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    jenn says:

    March 12th, 2012 at 9:22 pm

    This is pretty much the story of my life too. Except without the consent. I was 12 when I got sick, and 13 by the time they realized there actually WAS something wrong with me, and oh – by the way – it’s severe ulcerative colitis. Obviously negligent, but it’s Canada, you get what you pay for. I was diagnosed in Dec 1999, at 13, and went downhill consistently, with no response to meds (or any of those crazy don’t eat-anything diets), and in May 2001 I was admitted to the hospital. They tried super-high-dose steroids, which I showed absolutely no response to, for five weeks. I dropped to about 60 pounds, couldn’t eat, was on TPN, all the antiobiotics, and they tried cyclosporin which I had an anaphylactic reaction to the second it hit my veins. Then they were like – to my parents – the time has come, if we don’t operate, she’ll die. In fact, even if we do operate, there’s a 30% chance she’ll die. Well, I knew what this surgery was and I said NO, thank you, don’t touch me, I’d rather die. And everyone smiled all condescending and refused to allow me patient autonomy, and operated anyway. Over the next year, they did the j-pouch operations.

    Now I’m 25, and I’m about to finish my second law degree, and I haven’t changed my mind at all. I eat as little as possible, I weigh about 100 pounds, and I take industrial amounts of narcotics. Just in case you haven’t found anything to work for you – narcotics will. Forget immodium, it sucks, just blocks you up. Forget fiber, it actually makes things worse. Codeine, and oxycodone, are the life-savers of this surgery. Not only will they slow you RIGHT down, but they take away any pain. In fact, if you don’t eat, and just take piles of codeine, you can get your frequency down to only a few times a day. 

    I hate living like this, and I despise this surgery, and I haven’t changed my mind since I was 13. Now that I’m old enough to make the decision I still want to go ahead and die, and I’m figuring out the best way to do it. I live for the day I’m released from an inflamed body that lives in the bathroom. This surgery is basically a death-sentence. Actually, the whole diagnosis is. 


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    Nic Dames says:

    May 9th, 2012 at 3:03 pm

    I was just reading all the responses to your story. Life can be though. I have been really disturbed by the last comments. I feel so strongly that this person is screaming out for urgent help. Has anyone contacted her?


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    Trisha says:

    June 12th, 2012 at 6:17 pm

    Jenn!  I am so sad for you.  I had my surgeries two years ago at mt. Sinai and it was a total gong show too.  3 months in total in that place and several months recovering after. I also have two beautiful daughters who were 5 and 7 at the time and they needed therapy when I finally came home. I looked like a war survivor and they were scared of me. My oldest had to hold me walking up the stairs. How emotionally and physically painful for the whole family.  The lack of support and the 23 hrs a day I spent in there alone when my husband could sometimes only visit 1 hr a day. Every complication under the sun I had. A hospital to me is like  snakes and spiders are to others.  Utterly frightening. I was held down and had tubes shoved in me and pulled out of me and it was like the worst form of mental and physical abuse I could ever imagine. I hate what happened. My health today is ok. It seems to everyone around me that I am happy and functioning but sometimes it creeps up on me when I have had little sleep for all of the bathroom visits and my butt hurts and I feel nauseous and I wish I had it in me not to eat because it causes the whole thing to start again.  BUT, I need to be strong for my family and I have to carry on even though my body looks like i dated Edward Scissorhands. My girls tell me everyday how wonderful I am and it gives me the quiet strength I need.  I am telling you to find something that will bring you that strength as well.  Dig deep, seek, but please find.  Don’t let this beat you. The fact that you survived what you have already and you are smart and successful leads me to believe you can do it. My wonderful little 10 pound dog still lies beside me everyday as she did when I had to have homecare.i almost patted her fur off when I had to have my incisions cleaned and changed. There is someone or some little furry creature that can help you through.  Keep looking. You were meant to help others. I can see that because you posted your story. When we don’t know what to do with ourselves, serve or help others. Rewards are multiplied. I hope I can serve you as sometimes I don’t know what else to do either. 


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    Angela says:

    March 5th, 2016 at 6:15 am

    Hi! I’m so glad that you’re enjoying life more and getting better after such a tough road. I just had my jpouch surgery a few weeks ago and faced a lot of similar conplications as you. I’m still in the hospital and reading your blog gave me some hope (this whole ileus thing had me very hopeless). Thank you for sharing your story.

    I have a blog in the making too, that I hope can help some scared IBD soul one day too.

    Wishing you a wonderful life with your new jpouch!


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    Tom says:

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    I live within 2nrs of UCSF.  I already met with Dr Varma and her husband is my gastro Dr and head of UCSF gastro depart.  I really liked Dr Varma.   One question?  Has the frequency of output with J pouch gone down any?  And, how long can you hold u til until you have to go again?  


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