Had Colon Removed in 2011 and Now Have Option for J-Pouch

this is me and my girlfriend

this is me and my girlfriend

Introduction:

My name is Dennis, I’m 23 years old. Currently working for a bank and enjoying life. I live with my girlfriend and 3 dogs. I’m currently with an end ileostomy and looking to possibly do a j pouch next year.

Some more about me:

I’m a Freemason, have a wonderful girlfriend of almost 2 years, and now have 3 dogs roaming around my apartment.

Symptoms:

0 symptoms since surgery

Had Colon Removed in 2011 and Now Have Option for J-Pouch,

(but am seriously freaked out from the past experience, need some insight)

In the early spring of 2011, I was in college and living the typical student life. A few weeks in to the spring semester, and I could tell I wasn’t feeling right. My stomach was always upset, going to the bathroom 5-10 times a day and barely anything would come out. One night after work, I went home and blacked out. Woke up throwing up black blood and feeling god awful. I went to the hospital immediately. After sitting there for hours on end, feeling miserable with a 165 heart rate just sitting there, they diagnosed me with ulcerative colitis, and gave me some medicine to bring the heart rate down and make things better. I started to feel ok in a couple days, still puking and crapping blood though.

Unfortunately this meant that I had to go home for a few weeks and recover. Was feeling better in a couple weeks but going to the bathroom still wasn’t right. I went to our family doctor who had gave me some antibiotics because I was apparently ill with strep throat as well. This screwed my world up, I threw up constantly, going to the bathroom every 20 minutes. Just feeling near death, my parents drove me to a hospital in a nearby town. The doctors were all tied up due to a bad accident. I was seriously slipping in and out of consciousness by this point. After sitting miserably for about 45 minutes I just screamed that we needed to go somewhere else. They helped me walk to the car and we drove to Vanderbilt which is about 2 hours away. Plus an hour wait when we got there. I was literally laying in the floor just waiting for them to take me to a doctor. We get to a waiting room, heart rate through the roof, have to lay pads down because I kept crapping every ten seconds. I sat in a triage room for about two days, then they wanted to do a colonoscopy to see what’s going on. All I can really remember is going in to the room for that, vaguely being awake when my surgeon comes in and tells me they’re going to operate.
Unsure of how much time passed but I woke up in another room feeling god awful. After a brief recovery there, I was transferred to another room, where I was to recover. Spent about two weeks there, getting slightly better, but still felt like crap. My entire colon was removed, except enough to eventually make a j-pouch.

They said after a couple weeks I was ok to go home. So we made the trip back, but I couldn’t eat. I felt miserable. Trip back to Vanderbilt, blockage, more operation. Recovery took me so long, I was literally in the hospital for 3 months straight. I had to do TPN and have all the nutrient bags sent in. I went from 135 lbs to about 84. It was a depressing and horrible trial in my life, and I don’t want to relive it again.

After about May I was finally where I could eat food and get sent home. I still had to use the TPN bags for a few weeks, but quit early because I was feeling so good. Started walking around my neighborhood a couple laps before I’d get really tired, had to take some more medicine to keep my heart rate down.
Six weeks later and I was medically released. Started working midnights at Walmart for a year, felt fine, transferred back to another college(ended up taking another break recently, probably will finish my last 20 hours soon), and got my job at the bank where I work now. I basically live the life I did before, just without a colon.

Here’s my issue. I’m covered on insurance by my work, but due to the recent government plans, I am getting put back on my parent’s insurance in January, which will almost completely cover reversal surgery. Because my case was so bad, they did not set up a pouch during surgery, so I’d have to have both done. I’m basically traumatized from the whole experience, but my girlfriend is very supportive and wants me to get it done while she can support both of us. I’m really on the fence about it because I’m fine with the way things are now. This would just cover being self conscious mostly. My transport tech at the hospital had the same procedures done when he was my age, and he even showed me his stoma scar. He said it took him about 6 weeks to be ok, and about 4-6 months to be normal.

  • What is the typical recovery time-frame for this surgery?
  • What can I expect the complications to be?
  • What is life like with the J-pouch?
  • I’m just so worked up thinking about my last hospital experience that I don’t want to risk getting so down again.

Medications / Supplements:

Multivitamins, vitamin b-12 sublingual, 5-htp sublingual, omega 3, and vitamin d supplements.

written by Dennis D

submitted in the colitis venting area









12 Responses to Had Colon Removed in 2011 and Now Have Option for J-Pouch

  1. Adam November 4, 2013 at 5:15 am #

    Hi Dennis,

    When you have some free time, take a look at the stories that have been submitted by people here on the site who have already had their j-pouch completed.

    There’s lots of them via this link here:
    http://www.ihaveuc.com/category/colon-surgery/j-pouchers/
    (And I’m absolutely certain you’ll get a good idea of what it will be like and also there are answers to all your questions within those stories from different people’s perspectives)

    Recently, a guy named “Baker” has written 5 separate stories for the site, starting with one Titled: “Journey to A J Pouch” and his most recent “J Pouch Surgery, LIfe is GOOD 8 Weeks Post Takedown”

    here’s a link to all of Baker’s stories: http://www.ihaveuc.com/category/colon-surgery/j-pouchers/

    Best of luck to you with all your decision making, and thanks again for sharing,
    -Adam

    • PeterNZ November 5, 2013 at 12:33 am #

      Good one Adam,
      I’ve just had a routine colonoscopy (8 year cancer check). Found to have extensive pan-colitis and pseudopolyps. Waiting for biopsies to come back, but doctor reckoned “the writing was on the wall” – yes his words, ha ha.
      Cheers,
      Peter

  2. Heather Kelly November 4, 2013 at 6:05 am #

    Your story sounds familiar. I am 33 and was diagnosed with UC in 2011 after very mild symptoms. Something went haywire last year and by September 2012 I couldn’t leave home due to weakness and 20-30 bathroom trips a day. My first GI doc just kept throwing meds at me, but nothing worked. I live near the Mayo Clinic in Jacksonville so I got a second opinion. Within a few weeks of tests they realized the entire colon needed to go, and soon. Problem was I was so malnourished and couldn’t keep my hemoglobin level aboue a 6. Tried TPN at home for two weeks but it didn’t help. Also had to keep getting blood transfusions. Colon was removed Feb 2013 and I felt better almost instantly. Jpouch created May 2013 with no complications. Problem was I couldn’t stay hydrated and had 3 seperate trips back for bleeding at the surgery site. I just had the ostomy reversal about two weeks ago. Iam happy to be done with the bag, just a pea sized hole left that is healing nicely. My issues now are butt burn (calmoseptine cream and barrier cream wipes have that under control, take them with you to the hospital so it doesn’t get out of hand) and my hemorrhoids that I had with my UC are back and causing the only pain. I have also gone back with another bleed last week. The docs say I’m the only one that’s ever had this keep happening. Mayo Clinic is great, you get a team of docs in different fields to take you through the process. Recover after the jpouch surgery was fast, 4 days in the hospital and a few days in bed at home. The takedown surgery was even better. The first one is usually the worst because you are so sick. Overall, UC and this process has stolen over a year of my life, but now I can start to lead a normal life that I would not have had with UC or the bag. I recommend chosing a doc you really like and wish you well in your decision.

  3. Roxanne November 4, 2013 at 9:46 am #

    Hi there! My husband had a two step J-pouch surgery starting October 2012 and then takedown April of 2013. I will tell you that it was not a walk in the park and you really need good support to get you through it. Since you have already had your colon removed a long time, at least one part of it is already over for you. :) Even though it was a nightmare to get through, we do not regret it and he is cured, symptom free, pill free and feeling wonderful now a year since his first surgery.

    Complications are not fun but there are risks. For my husband, he had the totally worst complication that you can get. He had a staple come off on his j-pouch which left an open hole allowing intestinal things to get into his body. He got septic shock and almost died. He had excellent doctors though and it was discovered and treated well. He was in the hospital for a total of 23 days after his colon was removed and pouch was created. I frequent the boards a lot, and this is a very rare complication but important that you know it can happen. Other complications are developing narrow passages in the colon, scar tissue etc that can cause blockages. Other people can have trouble with their instestines waking up and have to be on an NG tube.

    So, while there can be complications… it is no different than the risks of any other major surgery. Just need to make sure you are aware of them so if something happens you aren’t side lined when it happens. My husband and I were not prepared for the septic shock thing… that’s for sure.

    Typical recovery time varies. It is hard to say… if you have no complications you could find the recovery process pretty barable. I believe most people go from pouch creation to takedown in about 3-4 months if all goes well.

    For my husband, life with a pouch is the best thing ever. He had UC for over 15 years …so be completely cured and fully functional is a dream come true. In his case though, he has what his surgeon called the “superman of j-pouches” – so, his results aren’t usually typical. He was fully sleeping through the night and pooing 2-3 times a day less than 2 weeks after his surgery. Most people have to slowly work up to that and don’t usually get to where he is for about a year afterward. Some people said that right after surgery they had some “leaking” at night time when they slept but as they healed and their sphyncter got stronger, this went away.

    Some other j-pouch complications include getting pouchitis or having “butt burn”. My husband doesn’t have a problem with butt burn… we got some lotion called calmoseptine ointment which is great. He’s only had to use it a couple times. If he eats spicy food or something that might make his stool more acidic, he may get a little butt burn. Pouchitis is more annoying and requires antibiotics to heal … some people are plagued with that and some never get it.

    For my husband, the ostomy would never have been ok. He hated it and couldn’t stand how often he had to empty it and all the issues we had. He had a “high output” ileostomy and it was pure liquid 90% of the time he had it. Because of where they had to put it in his small intestines, it was a very short track. He said if it had been a colostomy bag that he only had to empty maybe once or twice a day he wouldn’t have cared but an ileostomy was just too much for him. So, the j-pouch was a Godsend. He is super happy he did it…even though we had horrible complications. :)

    • PeterNZ November 5, 2013 at 12:30 am #

      Thanks Roxanne,
      That is very valuable information. I’m glad it worked well for yous.
      Cheers,
      Peter

  4. Dennis D
    Dennis November 4, 2013 at 10:33 am #

    Thanks for all the replies &insight! Would appreciate more. I’m actually working right now but when I have more time I will read through some more of the posts on here.

    I spoke with my doctor who did the surgery previously. He gave me a timeframe of what to expect. But mostly wants to get me in after the first of the year if I decided to get the surgery done to re look over everything.

    A big downside for me is that the surgery couldn’t be done laparoscopically, which is unfortunate. Part of the reason I was in so much pain was the fact that there was a massive incision on my stomach.
    Anyways, I’m still looking at my options to see if it’s worth it to roll the dice.

  5. k November 4, 2013 at 1:27 pm #

    Dennis, what an experience.
    I don’t know if I can be much help, but my emergency ileostomy (colon had perforated) was done almost 40 years ago. That was three days after I was (finally) correctly diagnosed with uc. The rectum (also diseased) was taken out the next year.
    With both the colon and the rectum out there is no easy way to check the prostate. And since I have had a high PSA for the last 15 years, they have had to do some creative work to get some biopsy samples.
    The other problem I have had is an adhesion. But I guess that could happen to anyone who has had abdominal surgery. Was in the hospital 12 days for that, the surgical incision was 8 inches – 25 staples.
    Obviously, if you could be sure a j pouch would be problem -free for the next 60 years, go for it in a minute. But who knows? I guess you make a decision one way or the other and at that point say, “I did what seemed best given all the circumstances.” And then go forward from there.
    There is a guy who has put up almost 40 videos on YouTube (at: ucandpsc) over the last 14 months about his three surgeries for a j pouch. He is pretty frank and open about it all.
    I wish you the best Dennis.

  6. PeterNZ November 4, 2013 at 11:46 pm #

    Hi Dennis,
    Is there a rush to have this op? If not perhaps a little wait might help you decide?
    Cheers,
    Peter

  7. Brittany November 5, 2013 at 9:00 am #

    Hello,
    After having colitis for 12 years, I was told my only option was surgery to remove the whole colon. This was done using laparoscopy, so I had no major incision, but because I was so Ill and on steroids and pretty sick I was not able to have the jpouch. I am actually only 11 days past my jpouch, which I had 6 months after the removal, and part of me if happy to have this, but I will not lie it is hard. I think it’s a bit harder for me, because I didn’t have an open incision before, so it’s much more painful to deal with (I didn’t know what was coming), and as well they changed the location of my stoma so I now have a loop illeostomy which means more liquid output much more frequently which I don’t particularly like. I was in the hospital for 8 days due to some nausea I was having (No NG tube required), but talking to others who have had this surgery this is just your body getting used to things again. My biggest reason to have surgery now was only being 22 and not having a family of my own to worry about while I have surgery. I am looking forward to the final reconnect. I was like you, and very scared to do the jpouch, even days before I wasn’t sure if I wanted to, but I am glad I did.

    • Cathy February 2, 2014 at 2:34 pm #

      Hello Brittany,

      I have a 23 year old daughter that had her perforated colon removed in March 2013 and her surgical wound is not healing. She has been in and out of the hospital and I am looking for another person around her age who has had similar experiences to talk to her, for moral support. She is in Los Angeles County, but a phone call would be nice. I just want her to have another young person to speak with who lost their colon from UC. Anyone else reading this post is welcome to contact me : mountain_poodle@yahoo.com
      Thank you, Cathy(her Mother) : )

  8. Mike from Ohio
    Mike H November 7, 2013 at 2:06 pm #

    I have had my J pouch for about 2 full months now and love it. It is so much better than taking care of a stoma and all the crap that comes with it no pun intended. I felt great and ready for work in 2 weeks. I have had no complications, none of the dreaded butt burn that I hear so much about and no leakage. I sleep through the night most of the time but now and then have to get up once a night but only if I eat past 8 o’clock. Hope this helps.

    Mike

  9. fuad February 15, 2014 at 1:53 am #

    Good morning
    All the bloody stool,cramps,ending up on a wc for hrs and alot more happened, then i had an emergency surgery in which my colon waz removed because it waz full of inflammation and they gave me a loop stoma then right after 6 months my rectum waz removed and they made a j-pouch and illeostomy left it for healing for a month.
    I am 24 and more then a week ago i had my reversal of my small intestine which i had illeostomy and before one month i had my anastomosis which the surgeon made a j-pouch, after the reversal they kept me 2 to 3 days fasting to get it heal and then i started to eat but i am always getting (constipated) and it is so hard to go through this last surgery because of constipation. Surgeries i had before were really easy to catch up and i enjoyed my life and waz happy with a bit complications sometimes but i could deal with them,

    Is it normal to get constipated after this surgery did anyone face this?

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