Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

Kira’s Update: Surgery No 1 Complete and it was a Good Choice

"Kira with husband in Hawaii"

“Kira with husband in Hawaii”

After 19 years of on and off symptoms, they last 5-6 years being progressively worse, they are gone! I had my first surgery 3 weeks ago today! I have to say it is very strange not to poop!

Some more about Kira:

As a mom, wife, sister, and teacher, I can not wait to be ME again! I don’t think we, UCers, realize how much we put ourselves through to try to maintain normalcy for our friends and family. But once I started telling my family I was going through with the surgery all the comments of my strength and persistence came out. I don’t even know what normal is!

Symptoms:

No UC symptoms! I am just learning all about “Bob”, my stoma, and all the supplies that go with having an ileostomy. And it’s not as scary as I thought it would be.

Kira’s Update: Surgery No 1 Complete and it was a Good Choice

I woke up at 4 am on Monday Sept. 22nd because I had to shower with a special soap before surgery. We arrived at the hospital at 5:30 am and I couldn’t believe how awake and ready I was. Pre-Op started about 6 with multiple nurses coming to ask all kinds of questions, start IVs, and ask more questions. I had this strange feeling of peace and excitement – although I could tell my husband was not as at peace as I was. I think it is easier being the one going through this than the loved one. I was given the option of having a nerve block on each side of my abdomen to help with the pain over the first 12 hours, and yes I took it. After that, one more kiss and “I love you” and I was wheeled away. I was hoping to see the robot since my surgery was robotic assisted, but it was all closed up still. I remember scooting onto the other bed and being strapped down. Next thing I was waking up to my husband’s relieved face and the best r ecovery nurse ever! Pain pumps are a wonderful thing!

swollen belly the day I got the drain out

swollen belly the day I got the drain out

I came home from the hospital on Friday, day 5. That weekend was extremely difficult – especially taking a shower! OMG – I thought I was going to die after the first one, but it felt so good! I still had a drain and I was trying to use the minimum amount of pain meds (not a good idea- use them!!). Getting in and out of bed was not so fun either. I dropped 7 pounds in my first 3 days home, apparently that is normal. I wasn’t used to eating since I avoided it most of the time to control my symptoms while I was at work – teachers can’t just run out of the room anytime. I have a whole new list of foods I can eat ( and a new list of no-no’s too)

My post-op appointment was a turning point for me. It was my first “day out”. I dressed in “real clothes, put on makeup, etc. Out came the drain – that’s an experience! The best part was when we learned the pathology of my colon. Some of you may remember I had a fear that they would tell me my colon was fine, especially because I was really at my best when I went into surgery. Well, It was so swollen they had to enlarge the ostomy hole to get it out of my me. They also had it tested for Crohn’s because it has some signs of that when they removed it. That came back negative and so did tests for cancer – YEAH! But the crazy part is the pathology said my colon was abscessing (close to perforating)! My surgeon said they don’t get that diagnosis and I am very lucky it didn’t! I have had this feeling of well being since day 1 – maybe it is because that toxic colon is out of my system. I hope so. The next best part of the day was going to lunch a nd not caring where the bathroom was! Oh and the hour long drive home – and not worrying if I was going to need a bathroom!!

So now I am very antsy to get back to work and my students, but my brain is way ahead of my body! If I overdue it I pay for it the next day. Those of you who were working out and in gyms by now I commend you! Maybe it’s my age, I don’t know, but I am happy and that’s what matters. And trying all the different types of ostomy bags, wafers, barriers rings, wipes, etc is a bit overwhelming! I think I am just going to pick one and stick with it! Anyone with advice on this – I am open to it.

Surgery number 2 will be in mid December or early January!

Medications:

I am on my final taper down of prednisone – 10 mg this week – can’t wait to be off of it for good! And a multivitamin for women – that’s it!!
I am terrified of a blockage, so I am careful not to eat the things that will cause one – I was really looking forward to salads and raw veggies, but that’s a no-no for now anyway. Now I just have to remember to eat!

written by Kira

submitted in the colitis venting area




50 Responses to Kira’s Update: Surgery No 1 Complete and it was a Good Choice

  1. Judith K
    Judith Kupstis October 25, 2014 at 5:30 am #

    So happy to read Kira’s update!! I am scheduled for my surgery in less than 2 weeks and need to hear lots of positive things!! I have been living with UC since 1987 and I am praying for a good outcome. I just retired from 44 years in banking and thought annual colonoscopies were routine until this last one. My colon and rectum are coming out on Nov 6th and I am very frightened.

    • avi October 25, 2014 at 6:15 am #

      Hello Judith,
      Coincidentally I’m having my surgery done at about the same time you do, and have the same feelings, actually as it gets closer I feel more ready than not. .it’s been a long ride for me as well and I feel it’s time to be healthy and live life instead of living and looking for the bathroom all the time. My surgery will be 2 step as I’m too sick to go through it all at once I was told, on steroids now. With everything I’ve read and watched and people I’ve connection through this prep process, we should be better than we are now. people are not looking back, they thino of their stoma as a life saver and that is how I plan on looking at it, it’s the only way to get through it!! I wish you all the best with surgery and easy, speedy recovery! !! Positive attitude and a smile always! ! Hugs!!

      • Judith K
        Judith Kupstis October 25, 2014 at 6:51 am #

        Thank you, Avi please keep in touch. As we will be going through this process near the same time, we can help each other!! It’s great to hear positive messages!

        • avi October 25, 2014 at 7:37 am #

          Definitely! With all the prayrs and positive attitude we should be okay!!

          • Kira H
            Kira October 26, 2014 at 2:59 pm #

            Judith and Avi – good luck to both of you! Avi you are so correct in that a positive attitude will make a difference! My surgeon and her nurse both commented on my positive attitude. Now I am not going to say I didn’t have a hard time ( in fact I broke down a couple nights ago) but that’s just part of the adjustment. The benefits far outway the life I had before! I am glad you have each other and I am here for you!

        • avi November 4, 2014 at 9:43 pm #

          Judith,
          thinking about you this evening! Wishing you speedy recovery and sending my good thoughts and prayers your way! G-d bless!!!.
          Mine went ok..time will show .but now I need to heal, feel bloated no place for the gas to escape..dealinh with that at the moment.

          • Judith K
            Judith Kupstis November 4, 2014 at 10:57 pm #

            Avi, can’t believe that you messaged me the same day as your surgery! You are amazing!! Please keep me posted as you heal. I am anxious to get this Thursday over with. Hope I can be as upbeat as you when I am done! God bless! Judy

          • Judith K
            Judith Kupstis November 5, 2014 at 5:48 am #

            Avi, What exactly did you have done in this first surgery? What is recommended to help pass that air out of you? Anyone have any suggestions for Avi? Judy

          • avi November 5, 2014 at 6:01 am #

            Good morning Judith,
            I had an end ileostomy, which was done laproscopically. They pump air into the stomach for the procedure and thatsee what is causing the cramping and bloating until small guy wakes up and the gastaff passes through the ostomy. ..was pretty bad yesterday until it started come out slowly. …still pretty distended and sore but pain meds help some. They Say Walking as much as possible helps, but it’s tough to do when in pain. Not everyone is as bad as I’m so don’t worry! !!
            What is the best way that others found to eliminate gas pain?

          • Judith K
            Judith Kupstis November 10, 2014 at 3:57 pm #

            Avi,

            Four days post surgery. A lot of pain but the great news is there was cancer but it is all gone with the surgery

  2. Lori October 25, 2014 at 5:46 am #

    Hi Kira! My name is Lori, so happy you are doing SO good!! I had my 1st surgery at The Cleveland Clinic, August of this year and it was the best decision I made. I was 20 when diagnosed and battled with this disease for 16 years. I knew when I woke up that I would be UC free and I was so excited to just get my colon OUT! I know that may sound strange to some people who have not been through what we UCers have but, it was time. My colon was also severely swollen, and I had a very high chance of colon cancer due to having my disease active for so many years. It was definitely overwhelming at first taking care of my stoma and bag but it gets easier. I’m a pro at it now! :) I feel healthy, have energy again, and pain free!! My second surgery is in February. Keeping you in my thoughts, and just know that you made the best decision to be there and healthy for your husband, children, family, and students.

    • avi October 25, 2014 at 6:27 am #

      Hello Lori,
      Thank you do much for posting!! Congrats! ! I’m having my surgery in one week, looking forward as you can imagine, have been through a ton of ups and downs over 18 yrs, only steroid sensitive, offor and on Prednisone but refused biological drugs all the yrs, c diff in September put me in the hospital and induced UC, prednisone again. ..the whole bit, tapering now and having problems again, not sure if c diff is back or its UC…tired! !! Very tired of the merry go round.
      question, are you getting a pouch, why did you get a 2 step surgery? I’m having a 2 step as well, but my surgeon feels with steroids on board and I’m too week to go th the entire process at this point. Will have a stump for a while and then will getb that removed.
      How was your immediate post op in regards to what products you’ve chosen and why, reaction to adhesive if any, Diet?!!
      Curious to know, and BTW, having it at Cleveland Clinic as well.
      Hope you continue doing well and feeling great!!

      • Lori October 25, 2014 at 1:53 pm #

        Hi Avi! 18 years? You are stronger than I my friend!! :) I’m getting the j- pouch in a 3 step surgery process, over the next 9 months. Prednisone has basically destroyed and weakened my immune system too much. My surgeon is Dr. Remzi, I feel very safe in his hands. Dr. Remzi has perfected this surgery. Mine was all done laparoscopic, and the pain honestly was not that harsh when I woke up. I was on good drugs, don’t get me wrong but as it came close for another dose or pressing the pain pump machine I felt relief very quickly. I would say you are more sore and feeling almost bruised inside if that makes sense?! Laparoscopic , if you can have it done that way, it cuts the pain and recovery time way down. You are extremely fatigued tho, you need all the time you can get to just let yourself get stronger, and let your body begin to get used to being UC free after being sick for so long. That was, and still is a huge ongoing process. We have put our bodies through the ringer with all of these drugs, I did biologics on and off for 16 years. I was on everything to treat my UC! My cousin Melissa had her surgery in April of this year, also at the Clinic, so there is a strong genetic link within my moms side of the family. I am Irish so my skin was sensitive to my first stoma adhesive, the stoma nurses at the Clinic are AWESOME :) and will get you in the right product that you won’t react to!! I still make appointments to see them, just to make sure everything looks good, and I’m still doing everything right. I am so grateful for my family, and the support from everyone at the Cleveland Clinic! Thank you SO much Avi for all of your kind words, this is the kind of support that is so important on the road to health and recovery that we all are sharing in!

        • avi October 25, 2014 at 4:12 pm #

          Lori,
          thanks for your prompt reply:)
          just wrote a long reply to you and lost it when it was sending. .oh well..here I go again. ..
          Coincidentally dr.remzi is my surgeon, I’m very glad to hear your comments re him. Will not be undergoing a pouch just an illiostomy, but heard he is fabulous at that. Cleveland clinic is the best place for colorectal procedures as you very well know, and that is so comforting. You are fortunate ok be close to it, for me it’s 3 1/2 hrs so I have to be able to change my bag before leaving the clinic although there are stoma nurse at the local hospital, it’s not the same.
          I’m also fair skind and hope they figure out what’s best for me to avold irritation.
          How did you do when your got home as far as managing your bad and how did you manage sleeping w it?
          How was your transition into the diet you are on now and what is it by now, are you eating pretty much everything?
          I’m interested in everything you can volunteer to share.
          Will be in touch with my progress, hope for the best!!!
          Keep up your positime attitude!!

          • Lori October 25, 2014 at 9:03 pm #

            Avi, Dr. Remzi is the best, period! Even tho I am having the j-pouch there can always be complications. Even if I need to have mine reversed, the new lease on life that I have gotten in these past 2 months, would not discourage me at all! I am UC free and finally healthy!! I am very lucky to live in Cleveland and be so close to great care. The stoma nurses at the clinic are going to make sure you got it down before you leave, don’t worry! Tell them if you have sensitive skin, that gives them a heads up. Also, they will send you home with at least a 2-3 weeks of stoma supply. The nurses will also write down the stoma product that you are in so you have that info to give to your at home care if you are getting it. If not, the stoma nurses at your local hospital should help you order your supply’s or give you the names and numbers that accepts your insurance. It really was easy to order my stuff! My nurses had all my stuff written down and I just read it off to them. There are a few suppliers to chose from, again it’s what your insurance will cover. I had no problems at all :) . Follow the diet! Eat very bland food at first. Certain things will cause odor that will peal the wall paper off the bathroom walls! Hahaha, I’m serious!! ;) If your bag smells awful, look to the food you just ate. Chew your food to a paste, this will minimize an obstruction. Gatorade 2 will be your new best friend! Dehydration can be a huge problem. They will give you a list of foods to avoid. You may have really bad acid reflux after surgery and that is very common. Ask your G.I. doc to put you on Prilosec or something on that order to calm down the stomach acid. Sleeping is okay, you will get up at night to empty out your bag. Gas can also cause the bag to blow up. If your stomach is empty gas starts to form. Eat something right before bed that will also slow down your out put in your bag overnight like a banana. I sleep on my back and side with no problem! Stomach is a no no!! It took sometime tho to do my side so take it slow. I was walking around the day after surgery and that’s the best thing you can do! You will be tired in the first few weeks but all of that will improve as you get your stamina back. It will take us longer because our body’s are in withdraw from prednisone! It will pass so don’t worry. Your stoma has no nerve endings so don’t be afraid that you will hurt it when it’s time to change your bag and clean it! I change my bag every 3-4 days. I shower with my bag on and blow dry it dry on the lowest setting so no water gets trapped and cause irritation or diaper rash between the stoma and the appliance. The nurses at the Clinic are going to go over everything, and a dietitian will visit you and go over all foods and stuff! You are going to do great, and are in good hands. You can also remind them that you would like to speak to someone about your diet. I hope I did not overwhelm you with too much stuff! It’s a lot to absorb, and somedays are better than others but you will get through it and you are UC free :) Please feel free to write anything else that comes to mind. I hope I have helped you, even if it’s just a little bit :) Keeping you in my prayers Avi, hope to talk to you again soon!

        • avi October 26, 2014 at 5:14 am #

          Lori,
          you are a God’s sent to me before my surgery! !! Appreciate every bit of information you’ve shared!! Will take everything into consideration. Thank you so very much. Hope your healing remain uneventful and smooth, you are awesome! !!!
          I’ll stay connected postoperative with my progress.
          God bless!!!
          Avi

          • avi October 26, 2014 at 8:32 am #

            If possible let me know your email address so I can keep in touch off this site? Thanks.

    • Judith K
      Judith Kupstis October 26, 2014 at 4:58 am #

      I keep reading about “emptying” the bag, aren’t they disposable? Probably a silly question, but I am not there yet.

      • avi October 26, 2014 at 5:06 am #

        Judith,
        not there myself yet, but from reading and watching u tube, they have disposable bags, maybe pricey but available, otherwise you have to empty it 5_6 times daily, and change the entire thing every 3_4 days.
        This site is a God’s sent to us UC patients, thanks to Adam! !! You LL Get Lots of great advice and we’ll need help.
        Keep on educating yourself to stay on top of things and ask questions.
        Lots of luck in your journey! !!
        Avi

        • Judith K
          Judith Kupstis November 5, 2014 at 10:06 am #

          Today is my prep day and tomorrow is the day! Not sure I will be able to communicate from hospital because I don’t have a smart phone. I will ask my husband to let you know how its going! Avi, so glad to have found you on this site. God Bless you, be well!! Judy

          • avi November 5, 2014 at 11:53 am #

            Judith,
            hope your prep is going well, just think of it as your Last one and that’ll make yoh feel better:)
            Good luck to you tomorrow, hope all goes well ! I’ll be th good thoughts!! May G-d give you strength and speedy recovery!

          • avi November 8, 2014 at 6:24 am #

            Judith,
            You are in my thoughts and prayers!
            Hope your surgery went well and you are receiving nicely! !
            Keep us posted on your progress:)
            Hugs,.
            Avi

      • Kira H
        Kira October 26, 2014 at 3:13 pm #

        Judith most of the bags are drainable. They do make disposable- one time use- but my nurse said those are more for colostomy patients who only go once or twice a day. You tube has been a great resource for me- there are some girls that I follow now that talk and show everything! I watched many of them before my surgery so I would know what to expect. Your nurses will go over it all too and I had a home health nurse who came each week and helped me order my supplies . And when they say your stoma is swollen and will get smaller it’s true! Mine was so big at first – but it is still changing at 5 weeks postop.

        • avi November 5, 2014 at 11:53 am #

          Judith,
          hope your prep is going well, just think of it as your Last one and that’ll make yoh feel better:)
          Good luck to you tomorrow, hope all goes well ! I’ll be th good thoughts!! May G-d give you strength and speedy recovery!

    • avi October 26, 2014 at 5:19 am #

      Wanted to give you my private email as well, not sure how to do that. ..
      let me know if you have any ideas.

      • Judith K
        Judith Kupstis October 26, 2014 at 5:34 am #

        myname at gmail

    • Kira H
      Kira October 26, 2014 at 3:45 pm #

      Hi Lori
      Congrats to you too on a new healthy life! I just got home from a 4 our drive and loved being able to eat and not stressing about restrooms!! Such simple things that make me happy ha ha. I still get sore around my stoma(under the wafer) but it isn’t red, did that happen to you? I am getting pretty good at changing it now too! My biggest thing is fear of it leaking when I’m out and about. I go back to work tomorrow and I’m nervous about that part, otherwise life is awesome!!! I’m sure I will gain more confidence the more I’m out too. Good luck in your next one- will that be it or do you have to do it in 3 like me? My 2nd one just got scheduled for mid December so I can recover over my winter break. Thank you so much for your positive thoughts!

      • Lori October 26, 2014 at 5:46 pm #

        Hi Kira!
        I’m glad you enjoyed a stress free road trip with out the worry!! It’s kind of crazy how much energy went to simple things like a car ride now that we are UC free. :) I did struggle with leakage under my appliance in the beginning. My stoma nurse said that your stoma will shrink 4-6 weeks after your surgery and it’s important to measure it as the swelling goes down. If you cut or stretch your stoma hole too big, stool and stomach acid can leak under the appliance and cause irratition! Also, are you using and additional adhesive (it’s like silly putty that you place over the sticky part of your appliance before you put it on) and your stoma powder? That stuff helps any type of irratition. Is your appliance one piece or two? Two piece can leak if not snapped on super tight. I wear a two piece so I always snap it on the appliance before I attach it when it’s time to change it out! I have had no leaks since I started doing that!! Thank god. ;) My second surgery is in Feburary for the construction of my j-pouch, three months after that everything will be reconnected and I’m all good! I think you will be surprised going back to work will be just fine! My nurse said; try not to let the bag get more than half full to avoid leakage and the weight that pulls on the appliance when it is too full. I’m excited to hear how it went so please keep up the updates. :)

        • Avital October 30, 2014 at 4:12 am #

          Hi Lori,
          I wS wondering if you like Kira, had a post op drain left and then removed at your office visit in a few weeks? I wasn’t told anything about that, not sure why?
          Thanks.
          Avi

          • Lori November 1, 2014 at 1:44 pm #

            Hi Avi!
            I had no post op drain!! Only one incision, where my stoma is. Everything was removed( my colon) through that. My colon was only removed in surgery 1. Did they construct your j-pouch as well as the removal of your colon?

      • avi November 5, 2014 at 11:55 am #

        Kira,
        I was thinking about you as I went through my surgery. Feeling sore and bloated. ..
        How are you doing, how are you managing work and stoma?

        • Kira H
          Kira November 5, 2014 at 5:46 pm #

          Hi Avi,
          I tried to respond to you last night about your bloated tummy, but my ipad froze.. anyway.. mine was pretty puffy too. I walked as much as I could – just got pre-medicated so it wouldn’t hurt so much. It was only bad for the first couple of days. Last week I was exhausted by Wednesday, but this week I am doing better. My endurance is getting better each week. That was also some great advice I received “measure your progress in weeks not days”. I am glad you are doing as well as you are.. stay strong that diseased colon is out of you now! Thank you for thinking of me!

    • avi November 10, 2014 at 4:09 pm #

      Judith, .
      Thank you for the update!!
      Congratulations on your successful surgery, glad they caught it early! Were the lumph nodes involved?
      Pain will definitely subside, just walk as much as you can tolerate and that will help you a great deal. I was hunched over almost doubled in pain, but it gets easier day by day. I noticed that pain meds slow down the bowl function and it takes longer for it to wake up, but don’t be brave and not use any.
      keep us posted on your progress! You are on the healing path now!!!
      I

  3. avi October 25, 2014 at 6:49 am #

    Congratulations Kira!!
    I’m delighted to hear your upbeat post as I’m going for total illeostomy in one week! Upbeat and nervous all the same time as you can imagine. Thank you for details, I’m very in post op everything, changing the ostomy, sleeping w it, and finally eating!! Please reply with your experience!
    My surgery will be laproscopic as well, was not aware that the drain will come with me home?
    All these nuances that they either omitted or maybe don’t apply to all..
    Where was your surgery, I’m in Midwest and will have it in CLEVELAND Clinic. Hope for the best! !
    Wish you a smooth recovery and all the best to you!!!

    • Kira H
      Kira October 26, 2014 at 3:29 pm #

      Avi I didn’t know I would have a drain either, it was a nusance at first but then I got used to it- and it was removed at my postop appointment the week after I came home. Just be careful if you have pets . I started wrapping it around my body and then safety pinned it to my shirt. You are right on about emptying the bag and changing it in your post above. I usually change mine late morning after a shower- it is less active then. Your nurse should show you about having everything ready before you take it off too. (Just like the people on you tube do). As for food – I have booklet and a list from the nutritionist who visited me in the hospital. Things like no raw veggies (cooked are ok) nothing with skins (peel apples and potatoes), nuts, popcorn etc. and chew a lot! But I can eat pizza and creamy soups and ice cream!! It’s been 20 years since I have had that! As for sleeping, it’s like lorie said- I started only on my back and now I can sleep on my side too. Walking is very important! Especially in the hospital – your belly will be full of air from the surgery so get up and walk as soon as you can and often. Use the pain medicine so you can do it. Many people say to measure your progress in weeks not days – that is very good advice! You will do great- you sound just like I felt before mine! I am still learning what my limits are. I go back to work tomorrow- wish me luck! And email anytime- kbhart5@verizon.net

      • Avital October 30, 2014 at 3:55 am #

        Thank you Kira,
        Apologize for delayed reply:(
        Hope you did fantastic on you r first day back!! I’m sure you had your reservations…talking major preparation for the first time…. Can’t wat to hear back.

    • avi November 1, 2014 at 4:21 pm #

      Lori,.
      Having it done in 2 days!!
      Not getting the pouch though. ..I’m on Prednisone and therefore my doctor feels it’s safer for me to heal, and then remove the bottom. Some people and Kira have drains post op so I was wondering if that’s protocol…I guess depends on the doctor and what he finds inside.
      Thank you so much for your replies! !
      Avi

      • Judith K
        Judith Kupstis November 2, 2014 at 5:25 am #

        Avi, Just 2 days? I will be having my surgery Thursday!! I will be thinking about you and praying for a great outcome. The next time we talk we can both celebrate our new selves!! Please take care, and be well! God bless you, Avi.

        • Avital November 2, 2014 at 6:10 am #

          Oh Judith,
          Thank you very much for your prayers and kind words!! The same to you, I wish you the very best and will be thinking good thoughts on Thursday your way!! May G-d bless us and give us strength and patience!!!
          New liberating beginnings for us are on the way, and I can’t wait to celebrate my freedom!
          Btw, where are you having yours done?

          • Judith K
            Judith Kupstis November 2, 2014 at 8:59 am #

            Hartford Hospital in CT is where I will be. Best wishes to you Avi!! Be strong!

  4. Judith K
    Judith Kupstis October 26, 2014 at 5:25 pm #

    Thank you, Kira, good luck going back to work!! I retired in July and did not expect this additional life change. Your story is inspiring. Like Avi, I am scheduled for my first surgery 1st week in Nov. I get that there will be good days and bad. I have great family support and now this new community of friends is helping me prepare. Thank you again for sharing! Judy K

  5. Ly October 26, 2014 at 11:32 pm #

    Hi Lori, avi or anyone on site,

    I live in canada and despite on meds, still experiencing some symptoms daily ( mucus in stool, my understanding is this is still consider some level of inflame ion in colon ?) but my GI didn’t think I need any enema or suppository. I plan to seek second opinion /medical advise in USA. Could anyone suggest which GI doctor you would recommend ? I did some research and according to website: mayor clinic in Rochester, MN and Cleveland Clinic are top two rated hospital in GI.

    Any suggestions ?

    • avi October 27, 2014 at 8:01 am #

      Hello Ly,
      welcome to the forum. So sorry you are having problems with your UC, it’s so debilitating!
      To have proper diagnosis is the key to any treatment of course and I would recommend Cleveland Clinic as the place for any GI issues and well as Mayo Clinic, the best places out there. Unfortunately can’t recommend a GI specialist in either place, but maybe others in the forums would. Good luck to you!!

    • Lori October 27, 2014 at 8:29 am #

      Hi Ly,
      I agree with Avi 100%! Both clinics are wonderful. I’m receiving my care like Avi at the Cleveland Clinic. Let me do some research and get back to you with a few names. I’m sorry you are having a rough time right now! You definitely sound like you are having a flare up!! Will get back in touch soon, Lori

      • avi November 8, 2014 at 6:34 am #

        Hello Lori,
        Hope you are continuing to do well!!
        Just wanted to check in on my recovery. Still in the hospital, was advanced to GI soft diet today…will give it a world!
        Had lots of bloating and gas pain in my shoulders and avdomen, it has subsided some in the abdomen, but shoulder pain comes and goes but when it comes it’s excruciating.
        This morning I woke up feeling overwhelmed and sad, nervous of the thought of coming home and dealong with my body out of the hospital…
        have you had to deal w that?
        Since my rectum is in place I’m worried about it function, healing. My rectum is attached to the incision in my lower belly
        Do you have your still and how is it on a daily basis, how did it heal?
        The uncertainty is killing me!!.thanks
        Avi

      • avi November 22, 2014 at 6:57 am #

        Hi Lori,
        Hope you continue doing well!
        Just thought I’d update you that I’m 2 weeks post op at home. Things are healing and my diet is according to recommendations, no vegetables yet no skins no nuts, I can deal w that not a problem. The only thing that I’m truly having a difficult time with is my rectum. Apparently remzi did not feel I can go through the entire surgery and left the rectum to be removed in 6 mo….well…in ideal world we aren’t living in, I d be just passing mucus as often as necessary, some do daily, some every couple of days and some every week or 2…not me…on the 3 day at home I was passing mucus 5_6 times a day, then some light pink ie blood appeared and the frequency became debilitating. I was constantly going w urgency as I had UC. Well, called remzi and they suggested to do Rowasa enemas at night and Canasa suppositories during the day. I did as suggested and pain and frequency did not subsided to the point where I had to take Tylenol w codeine for a few days!! My UC is back in the rectal stump! !! I’m devastated and if that continues I will not be able to wait for 6 month for removal. I’m not going for a pouch of any kind.
        Sorry to be such a downer, but I m very discouraged by constant pain!
        Thanks for listening.
        Avi

  6. Ly October 27, 2014 at 10:32 am #

    Thank you Lori and avi.

    There are tons of GI doctors listed on Cleveland clinic, looking forward to hear from you.

    Any dr you would recommend.
    Thank you.

  7. Avital October 30, 2014 at 3:59 am #

    Hello Ly,
    I have a team of doctors that came recommended fat Mayo from someone who has Chrones and had surgery to remove colon there. dr.Pickle, GI and dr. Pemberton, surgeon.
    Do the research, hope that helps.good luck and be well!!

  8. Mike from Ohio
    Mike January 22, 2015 at 4:19 pm #

    Great Story Lori, I too had my pouch done at the Clevelanfd Clinic in 2013 and life has been awesome since. As long as I stick to a decent diet I have no real complaints and most of the time forget I even have a pouch. Hope only the best for you.

    Mike

  9. Nos November 9, 2015 at 5:14 pm #

    – Danae did a wonderful job with our two year old daugethr and the pictures are beautiful!!! I was a little worried that we wouldn’t be able to capture many usable pictures of her because she is always on the go and does NOT like having her picture taken. Not to mention it was also very cold outside. Despite all she had going against her, the pictures turned out great and we had so many gorgeous pictures. Danae was very responsive and professional, I’ll defintely use her again in the future and have already recommended her to friends.

Leave a Reply