First J Pouch Surgery Completed, Still Some Concerns

Introduction:

My name is Katherine, and I was diagnosed at age 24 with UC (I am now 25). At the time I had a full time job. However, shortly after my diagnosis, I decided to go back to school for a Masters degree. I had no idea what I was in for. My ulcerative colitis progressed quite rapidly from proctitis to full blown pancolitis in about 4 months. I did not realize when I was first diagnosed how serious the disease was. But the symptoms got more severe in a very short period of time, so I became acutely aware of what UC was and what all it entailed.

My Symptoms:

I am three weeks out of my first surgery of the J Pouch surgeries. My surgeon had to do mine in three steps because I was so inflamed. The only symptom I have now is that I still have bloody discharge about once a day because I still have my rectum (will be removed in second surgery). It is rather painful, and I have a throbbing pain back there that happens when I have the bloody discharges.

My Story:

I spent 40 days in the hospital from June-August this summer, and decided it was time for something to change. I knew I needed an actual solution that would provide some actual relief, and realized my only option left was to get the surgery. It wasn’t much of a decision to make though. I had been on every medicine on the market for over a year- Lialda, Imuran, Prednisone (this medication literally made me demonic, my mood swings were unreal and I gained about 15 pounds in a month), Mesalamine and Hydrocortisone enemas, etc. My body basically laughed at all of them. I would get relief for maybe a week or two MAX. And when I say “relief” I mean having 10-12 bloody painful BMs per day instead of 25-30. When Remicade and Cyclosporine also failed, the surgeon came to talk to me and basically said that if I didn’t have my colon removed I would probably be on the road to cancer/never get to leave the hospital due to dehydration an d losing so much blood and weight. At this point I had no quality of life. I spent all of my time in bed or in the bathroom. I couldn’t go anywhere because I was so anemic and zero energy. I had to drop out of grad. school, etc. I was extremely unhappy and in a lot of pain. Also, I couldn’t eat anything and I love to eat. Not only do I love to eat, I love to eat spicy foods and haven’t eaten anything fun in a year.

Anyway, I had my first surgery Sept. 1. It has been three weeks and I feel okay, still not back to my “normal self.” I am extremely exhausted, still have the bloody discharge and painful butt throbbing sensation that lasts for hours at a time, and am having to deal with the temporary ileostomy. I am most concerned about the second and third surgeries. I want to hear from people- anyone- who has had this done. I just need to hear some confirmation that I will be okay, I will be able to live a normal life as a 25 year old. I want to be able to go out, drink a couple beers (I haven’t had alcohol in months), eat a salad if I want to.. just be normal. I want to be able to exercise- do yoga, run, work out- just normal stuff. I want to finish school without having the additional anxiety of wondering if I will be able to sit through an exam, make it home without spewing blood out of my butt, if I can go on a road trip with my friends, etc. I have read that there can be a lot of complications with the surgeries, which I worry about a lot. And I am really having a hard time adjusting to this bag. I do not like it. I am ecstatic and thankful that it is temporary. I’m very self conscious of it and rarely leave my house. It gets so huge and full of air, how are you supposed to wear anything but a massive t-shirt? I am surrounded my loving family and friends, which is helpful. But I need to talk to people who have been through this. Especially anyone who is my age or around it, but want to hear from anyone, no matter the age. I do not mean to sound negative, I just don’t think I’ve fully acknowledged that I had a major surgery and am about to have two more. It’s just a lot to think about, especially when I didn’t have much of a choice. I just want to know all of this will be worth it.

Where I’d like to be in 1 year:

Done with surgery, back in school and on my way to finishing my masters degree, and not taking any medication, only vitamins. I would also like to be able to eat spicy food again- Indian, Thai, Mexican, anything with Buffalo sauce on it.. I haven’t been able to enjoy spicy food in a long time and it’s pretty much all I want to eat.

Colitis Medications:

Honestly, nothing worked for me long term. I had “refractory” colitis, basically meaning I didn’t respond to any medications. Lucky me.

written by Katherine

submitted in the colitis venting area




j-pouch

6 Responses to First J Pouch Surgery Completed, Still Some Concerns

  1. k.colney September 25, 2012 at 5:01 am #

    hi,ihv written about m colitis n gt myself admitted on 7th sept in d hospital i hv tried messalamine. ..etc. ihad flareup evry two to three years the worst in 2006,2009 thn remicad helped.well last week remicad doesnot work for me this time each time i thought no more bleedn but every alternate morning 100ml blood comes out wt clot,m doctor who hs bn saving m colon toldme yesterday at the colonoscopy room that i hv to remove m colon, ya i expect him to say that coz m always awake n gt to see d inside of m colon.phew…sm pple said thy leave normal life after the surgery i hope n i jus put everything in God’s hand n pray for the best:-)il get to talk to m doctor day after tmorrow. katherine dont u worry i heard that once d clitis is remove we dont hv to eat those hvy drugs all r life but yes we hv to tk more nutritious food to kp imunity strong:-)n ya bit of more bowel movement then others but we dont hv to worry about putting on weight n can eat as much:-)im 33yrs old just like u m full of life n dream big.once m fine il learn how to salsa dance,go for volounteer in developing countries n hv fun.IL REMEMBER YOU IN MY PRAYERS N YA IL MAIL U M PROGRESS:-)

  2. Lisa OH
    Lisa September 25, 2012 at 7:36 am #

    Hi Katherine. I have experienced something similar to what you have – UC came on out of nowhere like a ninja and didn’t respond to any medication. My colon became toxic, so it had to come out. My 1st surgery was in Feb 2012 and I had the same feelings about the pouch. Don’t worry about that, you will get used to it. I also had the ‘diversion proctitis.’ My GI put me on a steroid foam which helped calm it down a bit, then I did mesalamine suppositories to keep it from going haywire. I had the 2nd surgery this past August, and although I was a bit more sore (nothing that a ‘lil pain medication can’t help), I felt SOOOO much better after this surgery b/c that yucky rectum was finally out of my body. No more blood!!! No more cramping and nausea!!! I go in for a follow up in Oct. to see if pouch works, then schedule the third surgery. Aside from all the physical discomfort I’ve had this past year, this disease really took a toll on me emotionally. It felt alot better to write it all down. All of the gory details are in this blog if u r interested: http://lisakapp.blogspot.com/. It starts at the very beginning @ “not so pleased to meet you, ulcerative colitis.”

    I will keep you in my thoughts. Don’t get discouraged. You are only 3 weeks out. It is normal to have good days and bad days. Be patient with yourself. It takes awhile, but you WILL get through it!!!!

    Take care,

    Lisa

    • Katherine September 25, 2012 at 8:40 pm #

      Hi Lisa,
      Thank you for your response. I just read all the entries on your blog- what an inspiration! It really helps to talk to people who know what it is like to go through this. I do have several questions, relating more to the nature of being female and what that can do to our bodies. If possible, I would rather email them directly to you. I have heard that there can be complications with certain things, and just wonder if you have experienced them. I am going back for a check up with my doctor this week, and plan to ask her my questions as well.

      Your story is similar, which gives me hope that I will be feeling as normal as possible again soon. It is crazy how this disease can just spring up out of nowhere and progress so quickly. Like you, I have always considered myself a very healthy person. I am by no means a marathon runner (I feel great about myself when I rum 2-3 miles..ha), but always eat healthy, exercise, etc. Oh well, it seems like recovery is largely dependent on how positive you remain. You seem to have everything in great perspective– thanks for sharing your story.

      • Lisa OH
        Lisa September 26, 2012 at 4:41 am #

        Hi Katherine. My email is lisakapp@ymail.com. Im happy to answer any questions u have, if I know the answers haha

  3. Blake September 25, 2012 at 10:46 am #

    Hey Katherine,
    I just wrote my story on this website called The Journey to a Completed J Pouch, so read it if you haven’t already. I also did my surgery in 3 steps. You just had your colon removed and your learning to live with an ostomy it sounds. I too had to pass stuff out my butt after having my colon removed about once a day. I don’t really remember any pain with it, so maybe you want to call your doctor. But then again, maybe I did and I forgot, it’s hard to remember everything cause you go through a lot. I think once you become a bit more active, you will start feeling a lot better. I found that trying to stay busy is one of the best things to do, it doesn’t allow you to dwell on all that has happened and all your going through. I would suggest taking a lot of walks, maybe start exercising if you feel up to it again. I went back to the gym two weeks after having my colon removed. I didn’t do much, but I just felt better by getting out there and slowly began getting back my strength and was back to a full blown gym rat by week 6. There are a lot of belts that you can order that will help conceal your ostomy. In the beginning, I just wrapped an Ace Bandage around my belly to hide it. Later, I found a belt with a hole in it that did the trick, I would wear it all day sometimes, found out it helps keep the bag on a lot longer too. There are all sorts of things you’re going to find out that make life a little easier. I didn’t drink often with an ostomy, but when I did, I would drink more than my fair share. I never had any problems besides being hungover and worthless the next day. As far as salad, I never really was a fan, so I don’t eat much anyway. I think I do remember eating a salad and when emptying my bag, you could tell that the lettuce just doesn’t digest very well, so I pretty much stayed away from most veggies. There are a lot of bags that have filters on them to let out any gas. They only work well the first day or two though, then the filters clog up. I never had problems with my bag filling up too much with gas. I would just empty it and push any gas out along with it. I really enjoyed my life with an ostomy. Besides having to wear a bag, I felt the most normal I had since before I had UC and I was greatful for that. Now that I have a J Pouch, life is good too. You just have to come to the realization that your body functions will never be as good as they were when you had a fully functioning colon. You will have a new normal and as long as you can adapt to that new normal, you’ll be happy you did it. You will, without question, be much happier than if you chose to stay with your colon, spend your days on a toilet squirting out blood, worrying about having accidents, medications, what to eat, etc… I know it’s hard, but staying positive is very helpful. Don’t think about all the things that could go wrong because you’ll pull your hair out and chances are you will not have any “major” complications. I think people tend to blow their complications way out of proportion scaring the shit out of all of the rest of us. My complications were drug allergies, an incision infection, butt burn and a blockage for the most part. Now, I could scare the shit out of you and make them sound like they were absolutely horrible, but they weren’t that bad, just some bumps in the road. I guess what I’m trying to say is everything is gonna be okay. Let me know if you have more questions, I’d be happy to answer. Take care, I wish you the best of luck!

    • Katherine September 25, 2012 at 8:47 pm #

      Hi Blake,
      Thanks so much for your response! It is nice being able to relate to other people who are going through the same thing. I agree with you, adapting to a new normal is much better than living the type of life I was previously with my colon. I am really wanting to get this rectum out asap, it’s starting to get more irritated I think. I am seeing my doctor this week and plan to discuss it with her. The blood is coming now 4-5 times a day and its just really uncomfortable. It is good to hear that you are doing well (after reading your story), and that there is relief and happiness at the end of all of this. For me it has only been a year and a half or so, but it sure has had it’s ups and downs (more downs, but on the road to more ups I hope). And whew, glad to know that the complications are really as life threatening and scary as I thought. I guess there is always a chance, but it is silly to dwell on what you can’t really control.
      Thank you again for sharing your story.

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