Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Road to Recovery – Update From Emie

Emie with family

Me with my family

Meet Emie:

I am a fighter, I am stubborn, and I am finally UC free!! Finally on the road to recovery! Excited to have a life again!!
My 9 year battle is over!!…well the first step is done anyway!! (you can read my first story “Ready for Surgery” from October 27, 2012 here)

Colitis Symptoms:

NONE!!!! Praise the LORD!

Road to Recovery

I FINALLY GOT IN TO SEE THE SURGEON the 13th of December and told him I wanted to have the surgery as soon as possible……..he came back and told me I could do it on the 19th!!!! I wasn’t sure what to think at that moment, but was thrilled that it was finally going to be over! I was figuring that it wouldn’t be until the end of Jan because it took so long to get in in the first place, but I was wrong. I went to work the next day and broke the news to my boss that I had about 3 days to do some hard core training on my job.

Nervous and Excited and Getting a Boob Job

My surgery wasn’t until 5:30 pm, I live about 45 min from Seattle on a normal day, but at that time of day it took us about 2 hours to get there……45 min of which was spent going five miles!! Got to the UW at 5pm and was admitted and the whole process started. I was a little nervous and excited to just get in there and get it over with. I was out of surgery by 11:30 pm and in my room at 2 am. My husband and friend were exhausted but happy to see me. I just remember being super thirsty and talking crazy. I think the first thing I said was something crazy about getting a boob job…hahaha…that would have been a bit more glamorous maybe but wouldn’t have fixed the problem.

At first I was shocked at how large the incision is and seeing the bag, but I just have to remember this scar will be the proof that I won, I kicked UC’s ass. I am very lucky to have a great friend who is a RN and despite being 6 months pregnant and having a full time job she stayed with me every day but 1 in the hospital and made sure I had excellent care. It was nice to have someone who could “translate” the information for me. I was eager to get out of the hospital so I did everything I had to to get home for Christmas. I was discharged on Christmas Eve and although the incision was uncomfortable I felt great! We even had family over as planned for Christmas, I did have to go to bed after presents but was so happy to be home.

Staying Positive

Since I have been home I have been trying to stay as positive as I can. Anytime I start to get discouraged about the pain I am in or the bag hanging off of my body I just have to remember how lucky I am that although Ulcerative Colitis was terrible, it is curable. I am not going to die from UC, in a few months my battle will be almost over, and in a year I will be sitting on a beach in Maui celebrating my life, my anniversary, and my daughters birthday.  I have such a great support system, friends and family taking my daughter to play, bringing us dinners, going grocery shopping for us, doing laundry…….I might want to have surgery more often……totally kidding. My husbands cousin also went through this same surgery 4 years ago so I have her to help me too to understand all of this. I’ve lived in yoga pants and hoodies for the last 3 weeks but hey, I don’t have to worry about pooping my pants, I have no stomach pain any more….sleeping is a bit difficult yet, but I’m sure I will figure that one out soon too. Hopefully the take down is as “easy” as the first one.

Going Back to Work

My next step is going back to work…….not too excited about that, not that I don’t like my job but I haven’t really been out of the house yet aside from getting my staples out and watching football at my prego friends house……GO HAWKS!!
The best thing I have heard since I had the surgery is when one of the nurses was discharging me and was talking about what I was there for and she sad  “I” you were here because you have UC, let me correct that you HAD UC”.  Thats right I had UC, but I don’t anymore!! The thought of surgery is scary, but I wish I had done this right after my daughter was born 4 years ago. Best of luck to all that are battling this disease, you can win though!!

Current Medications:

Prednisone taper….two weeks left of that and then nothing!! Woot woot!!

written by Emie

submitted in the colitis venting area




28 Responses to Road to Recovery – Update From Emie

  1. Jen From UK
    Jen January 29, 2013 at 2:43 am #

    I’m so thrilled for you! I’m a 31 year old mum of 2 boys (4 and 17 months) I WANT surgery!!! Been in my first flare since may 2012 and I’m still losing :-( thought scd probiotics and new pills were helping but been on dreaded pred since August and only a little inprovement. It’s awful with kids!

    I love that you’ve won :-) good luck with everything xxx

    • Emie
      Emie January 31, 2013 at 10:27 am #

      Hi Jen,
      I totally feel your pain, I had tried it all too. I feel great now!! I can go to dinner and not have to rush home, I can snuggle on the couch with my daughter and watch an entire movie! I hope you find a great dr to do the surgery. My thoughts are with you!!
      Emie

  2. julie January 29, 2013 at 8:58 am #

    Hi Emmie
    I too have opted for surgery and meet my surgeon on the 26th of Feb, I will be having key hole surgery though. Is it very painful after, how are you adjusting to the bag. I can’t wait to be honest had this illness 11 years and been in non stop flare since July 2012. Well done you and may I say what a lovvely looking family you have stay positive and strong

    • Emie
      Emie January 31, 2013 at 10:43 am #

      Hi Julie,

      I am so excited for you!! I’m not sure what the key hole surgery is, so i cant really tell you how your pain might be, but I can tell you my only pain was from my incision which was like 10 inches long and through all my muscles so moving, coughing, or sneezing was quite painful. The pain did keep me from crying though because it hurt to do that so thats good right? The bag was a shock at first, still I find it to be difficult when I have to change the bag. I have just developed an allergy to the adhesive so the last week has been really rough. I have actually broken out in hives all over my body and my skin around my stoma is so irritated that it just wont dry out. Should be getting some new supplies today though so hopefully that fixes it. Other then that most of my friends and family forget that I have a bag, you really can wear most anything that isnt too clingy and be able to hide it. just make sure you ask a lot of questions. I hope you get better soon, and afterwards just stay positive, even if you think why did i do this, just remember that your stomach doesnt hurt anymore and the bag is temporary and scars tell a story of strength. Best of luck!
      Emie

  3. Senga Taylor January 29, 2013 at 8:05 pm #

    Emie, well done. You are a brave and strong woman. I feel that you have made a decision that is right for you. I know how horrific UC can be and often is. I really enjoy reading your posts and Please (if possible) keep updating as I would like to hear how you are going. I have my sister who is at the end of her tether and is desperate to have her colon removed. She now has Lupus which maybe caused by the medicine she was taking. I hope that everything continues to go well. Thank you for your update. Senga X

    • Emie
      Emie January 31, 2013 at 10:52 am #

      Hi Senga,
      I’m glad that you like my stories, I feel so much better telling them. I”m sorry that your sister is not doing well. I made the decision to have surgery partly because I didnt want to try another medication that might cause other problems. The surgery seems so much scarier before you have it, but once you do you will wonder why you didnt do it sooner. The pain that you experiance after the surgery is nothing compared to the daily pain that you have from UC. I know personally there were days when I would go to the bathroom and be in so much pain I didnt know if I was going to pass out or throw up, and that was multiple times a day, I have none of that now. Best of luck to your sister, and thanks for being a support person, you guys are the most important in the healing process.
      Emie

  4. bev January 30, 2013 at 10:58 am #

    Hi Emie!!

    It is always so great to hear that one of us is happy!! I am thrilled for you and that you are now in a good place. To truly ‘kick’ UC, yes, surgery is the only way!

    Hurray for you!! Y

    • Emie
      Emie January 31, 2013 at 10:52 am #

      Thanks bev, glad you are still doing great!
      Emie

  5. Natalie January 30, 2013 at 2:48 pm #

    Hi Senga!

    I am just curious as to what medication may have caused your sister’s Lupus…sorry to hear about that. This disease really sucks! I take Lialda and hope that’s not what your sister was taking.

    To Emie!

    You certainly are a brave woman and so happy to hear you’re doing okay. I hope you will have a quick recovery and that you will be in perfect health in the very near future.

    • Emie
      Emie January 31, 2013 at 10:54 am #

      Thank you for the kind thoughts and for reading my story. I already feel so much better, I cant wait to see what I feel like in a year. Best of luck to you!!
      Emie

  6. Catherine February 1, 2013 at 7:48 am #

    You are going to be GREAT in a year. That is where my 20 year old daughter is now. No meds is a wonderful thing!!

    • Emie
      Emie February 1, 2013 at 9:21 am #

      Thanks Catherine, I sure hope so, I am so happy for your daughter that she is all better!!

  7. Kara February 1, 2013 at 6:09 pm #

    My daughter Madison is 14 and she was diagnosed last March. She has had four flares and this last one hasn’t ended. The other flares responded quickly to prednisone but this time we are on 60mg (up from 50 and 40 the past times) and haven’t had much improvement. Been bleeding since before Christmas 2012. Her hemoglobin is getting low but not too dangerous (8) . The nausea and cramps and running to the bathroom to poop has had her discouraged and researching surgery. The specialist wants to discuss relic aid and humera next week. My husband was diagnosed at age 19 and his has never been under control. He has tried everything except her drew the line at remix aide and humera and refused. However, my husband doesn’t have blood, just runs to the bathroom often everyday and sometimes cramps, but only has a flare with blood every few years. This has been hard to see our daughter go through this. She’s been hospitalized three times in the past year. We are glad that my mom found this site. Thank you so much Emmie for sharing your story. I know your recovery won’t be easy every day, but the ultimate goal is in site. Please continue to give updates when you can as we are considering if surgery might be right for our daughter in the future should the next step not work. We are planning to goto a specialist who will test for allergies soon before we try biological s ( remix aide and H). It just seems hard to believe that a healthy active soccer teen could suddenly get this ill from sudden allergies that she never had before.

    • Emie
      Emie February 9, 2013 at 10:20 am #

      Hi Kara,
      I am sorry to hear your daughter has been batteling this disease, and your husband. It is a huge decision to try Humira and Remicade, I put it off for as long as I could. Humira worked for about five or six months for me and Remicade helped for about two years. Neither one though ever made all of my symptoms go away, i still had the urgency, the blood, and the mucus. It still hasnt even been two months since my surgery and i feel great! Whenever I get frustrated with having the bag my husband just reminds me that I dont have any stomache pain anymore and how much better I feel now. I truly can have a life again. I have just this week been able to work an entire week and feel confident that no one notices my bag, and I have gone shopping and had a couple dinner dates and been able to truly enjoy myself. It was probably the hardest decision to make, to have surgery, but I am so happy that I did. If you do decide to go that route with your daughter, just make sure you find the best surgeon that you can, I know that is why I have been able to have such a great recovery. Best of luck and I will try to help you in any way I can.

    • Angela February 9, 2013 at 10:58 am #

      Hi Kara,

      I was also diagnosed at 14 and after becoming dependent of prednisone (I was on it for 3 years without being able to step the doses down) and having both 6MP and Methotrexate not work I made the decision to go on Remicade. 10 years later (8 years of remicade), I am doing fantastic (never have I been hospitalized in that time). I would recommend trying Remicade first before deciding on the surgery as the surgery is a big decision especially for someone so young. I would recommend remicade over humira (remicade was the first drug of its kind) and remicade seems to have less odds of side effects than humira.

      I started receiving remicade in a pediatric setting, so here are my tips. Standard infusions at a pediatric clinic take around 3-3.5 hours (adults administer it in 1.5-2 hours) The slower rate is better for kids. And make sure to talk to your doctor about pre-treatments which help minimize the risk of a reaction. This can either be a combo of benadryl and tylenol OTC pills (they’ll give them to you there) a half hour before or a combo of IV benadryl and a IV steroid like decadron a half hour before (this is a low dose, one time steroid so there aren’t side effects from its use). Have a TB test prior (its the standard skin test) and make sure once she starts remicade she wears sunscreen when she’s out in the sun for a long period of time as remicade makes you more sensitive.

      There is hope! I still played 2 varsity sports in high school (even playing tennis matches the day after a remicade infusion), studied abroad for a year in Europe (and received remicade there), and I’m a certified scuba diver and avid hiker. Remicade has helped me dramatically, and while it doesn’t work for everyone, it is worth giving it a shot first! You can always stop it if it doesn’t work and then discuss the surgery.

      If it doesn’t work, there are two primary reasons 1. it just doesn’t work (you don’t respond well) or 2. some people build antibodies to the remicade. Because this can happen my doctors have always said that if remicade stopped working they wouldn’t put me on Humira because the drugs are way too similar. So make sure you aren’t switching between the two. (It’s roughly similar to if yo take tylenol and have a problem with it, you shouldn’t go and try another brand of acetaminophen).

      I’m wishing her all the best of luck! A good way to get through this as well at that age is to have not only your family’s support but a friend’s as well!

      Angela

  8. Mike from Ohio
    Mike H February 2, 2013 at 1:46 am #

    Hi Emie,
    I too just had my entire colon removed on my first surgery on Jan. 9th but I chose the three step process so they could do it laproscopic with only a four inch cut rather than the large gash and it also has less of a chance of making guys impotent. It took three weeks but my tools are finally working again LOL. It sounds like other than the size of our incisions we are feeling the same. I too have trouble sleeping and other then the bag being a pain in the ass (no pun intended) I am feeling better by the day. I do have an empty feeling in my gut and my bladder area still feels a little funny and sore at times but nothing major. I dont mind emptying the bag but changing it i still a s chore for me as well. My insurance has allowed a home health nurse to visit me for a couple weeks at home which has helped alot. I am nervous about going back to work but I lost so much weight and stregth fighting UC and even more while in the hospital that the doctor gave me 8 weeks to recoup. My surgery story will be posted here on Feb. 6th and I am already offering advice and encouragement to anyone facing the samething we did. UC does (did) suck and I too was scared of the surgery but like many wish I would have had it done sooner and avoided the terrible weight loss, pain and suffering. I wish you all the luck. BTW when is your takedown? Keep us posted on how the new pouch works after your plumbing is all hooked up.

    Mike

    • Emie
      Emie February 9, 2013 at 10:52 am #

      Hi Mike,
      I am so happy for you that you are feeling better,and that your “tools” are working hahaha, Happy 1 month anniversary by the way!! I think at one month was when I started to handle all of this better, and now I actually forget at times that I have the bag. I have my pre-op on Monday which I am actually nervous about, not sure why, but I am. I am scheduled for my take down on March 9th. After having the bag it makes me a little scared to get rid of it and go back to pooping in the toilet!! I will be happy to get rid of it though because my skin has been so itchy it drives me crazy!! Since i switched product it has gotten better but not all the way. Oh well, my stomach doesnt hurt anymore so i suppose it is a fair trade. I will get to reading your story. Dont worry about the weight loss, I lost about 10 lbs, which on me is very noticable, but before I went back to work I was able to gain about 6 or so lbs back, and now that i have an appetite again and dont have to be afraid to eat, Im sure it will all come back. I have found that going tanning has helped me feel better too, being in Washington we dont see the sun much in the winter, plus having lost some weight I feel like having some color on my face makes me look better hahaha. And dont be “too manly” to go tanning, it is relaxing and a lot of men go. Anyway, best of luck to you and I will keep everyone posted on my recovery #2.

  9. Senga Taylor February 3, 2013 at 8:08 am #

    Hi Nathalie,

    I am sorry it’s taken so long to reply, but I now know what medication my sister took which caused the Lupus. She said that it was Infliximab…think that is how it’s spelled? I hope that reassures you. XX Senga

  10. kara February 11, 2013 at 9:03 pm #

    Emmie, My daughter is now feeling better. We cut out dairy and gluten 10 days ago and she is now having a bm once ever day or sometkmes every two days. She is still on so much meds./ suppliments. I feel bad giving her so much. It sometimes makes me nauseous just looking at all of them. She has much mre energy now. Many friends have brought us some gluten free foods to try which is sweet. She has recently lost her apetite and has lost 5-8 pounds while on our prednisone wein down.

    My husband has always wanted the surgery but his GI doctor says that he has to try Remicaid or Humera first. He just wont. He is too nervous about it. And I see his point it just really seems that removing the colon woukd be better for your body than pumping it full of strong drugs for the rest of your life. His grandmother had an iliostomy as long as I knew her and battled arthritis. She was never given a diagnosis that we know of. She passed a few years ago around the age of 87. We have recently learned of a top surgeon in Birmingham.

    Your story is inspiring and we hope that you will continue to keep us updated. (I am typing on my phone so sorry for any typos on this tinystiny screen)

    Thank s Angela for the tips about Remicaide too. Its nice to hear from thers who have tried it and not just from an MD. :)

    • Emie
      Emie February 13, 2013 at 9:21 am #

      Hi Kara,

      That seems so weird that your husbands dr wont do surgery until he tries Remicade and Humira, I wonder if that is something your insurance company says or really his rule? My dr would have referred me long before I tried the other meds, but I wasnt ready mentally to go through all of that. Maybe his dr thinks that your husband may be upset if he has the surgery before he tries other more powerful meds? i dont know seems all drs are different. There were still options for me I just chose not to do them, the patient hand out you get with the Remicade is scary enough, I wasnt about to put the next medication in my system and have it fail and possible give me something worse. The Remicade was worth a try though, it gave me a couple years of less symptoms, never taking them all away. Very, very expensive, so if he does try it get on the Remistart program before hand to help with costs. I have great insurance and it was still about $750.00 out of pocket each time.

      Im glad your daughter is feeling a bit better, i did the gluten free thing for years and it did help with my symptoms, I also cut out eggs and dairy. the only thing is it is SO expensive to shop for gluten free. More and more places are offering gluten free options though so that is nice. Since surgery it seems I am able to eat whatever I want. probably when I get hooked back up I might go back to my before surgery diet just because I feel like I made better eating choices.

      I wish you guys the best of luck!! I am happy to help you and your family out, if you have any questions just let me know!! Thank you for your kind words too.

      • Barb February 20, 2013 at 9:50 am #

        Hi Emie,

        I have a question for you. After the surgery, how long do you have the bag on until they reverse it and what happens after that. Can you eat whatever you want and how are your stools?

        Barb

        • Emie
          Emie February 21, 2013 at 8:16 pm #

          Hi Barb,

          I think every one is different, and depending on if you have it in a two or three step process the recovery is different. I have heard that typically if you do it in the two step process as I am, it is 12 weeks between surgeries. I will be just under that when I have my take down surgery. Really though time seems to have just flown by. Before surgery I was on a very strict no wheat, eggs, dairy diet, since surgery I basically can eat whatever I want aside from the things they tell you not to like nuts and seeds and popcorn. I have had such a great time since surgery. I have been able to go out with friends, have my nails done and go to lunch in the same afternoon and only empty my bag twice (that was over about 4 hours) and it isnt weird to do that in public either. My husband and I even went out to the bar and had a great time with friends, I danced, played pool, and had a great time and didnt feel like anyone even knew I was any diffrent. I had nothing to worry about.

          After I get “hooked up” I will still have to avoid a few things for a while like spicy foods, nuts, corn, popcorn, things like that. Over time though I should be able to eat most everything. It could take up to a year to feel great, but I will feel better than I did before. In the begining I will have to go to the bathroom alot, but as the pouch stretches and my body gets used to things I will only go about 5 or so times a day. That probably seems like a lot still to the average person, but as long as Im not bleeding and in pain,and can actually hold it for a while, I will take it. I have just over two weeks left and then I will be all back together. This has been the best decision I ever made, I am so happy I finally did this. Once I get to feeling better after my next surgery i will let you all know. Thanks for your support!!

  11. kara February 21, 2013 at 7:24 pm #

    Yes Emie, how are you feeling? We would love to hear an update.

    • Emie
      Emie February 21, 2013 at 8:22 pm #

      Hi Kara,

      I am feeling great!! two weeks left until surgery and I am super excited!! Had all of my pre-op appointments last week and I am all good to go for the 9th. I am even likeing my scar, it is huge, but pretty cool. I really am doing so great, this has been wonderful!! I will for sure keep everyone up to date after my next surgery.

      • Natashia March 17, 2013 at 8:33 pm #

        Hi Emie. How did your 2nd surgery go? Curious,because I’m on the fence between starting a new drug and having elective surgery.

        • Emie
          Emie April 7, 2013 at 5:22 pm #

          Hi Natashia,

          My second surgery went great!! I was in the hospital for two and a half days and went back to work two weeks later. It has been almost a month since surgery and life is great! I don’t take any medication, any supplements, nothing! It is so great! I can basically eat whatever I want, which isn’t really a good thing because my clothes are getting a little tighter, hahahha. I do have to get up about two times during the night, but I was pretty much doing that anyway with UC. At least now when I go I am in and out of the bathroom in just a few minutes and there is no pain and no blood. I have NO regrets about doing this, NONE! I have energy again, If I feel like I have to go, I can hold it for a long time. If you have a great support system, good insurance, and a positive attitude, my advice would be to start talking/thinking about surgery. I finally made the decision to have surgery because I didn’t want to do any other meds, the side effects sounded awful and I had already tried Humira and Remicade with only limited success. I didn’t want to expose my body to any more awful drugs that might not have worked. This has given me my life back. Truly worth any pain I had to go through. Best of luck to you, If you have any questions let me know.

  12. Kara April 7, 2013 at 10:11 pm #

    Emie,

    We are so glad that you are feeling great and didnt have complications from surgery. And the fact that you are back in control of your body and no longer in search of the next bathroom must be wonderful! My husband has discussed with two different G.I. Doctors his desire to begin talking about surgery but both said that he needs to try Remicaid and Humera first. It seems like it would be healthier for your body to lose your large intestine (most digestion occurs in the small intestine) than to put such strong chemicals into your body for the rest of your life. Not to mention that these biological medications are so expensive. I would think that insurance would prefer the lower cost of a surgery than $3000 medication every 6 weeks for years and years. We have recently heard of a great surgeon near us who is known for this.

    • Emie
      Emie April 8, 2013 at 8:39 pm #

      Hi Kara,

      I think if your husband is serious about surgery he should be able to refuse the biological meds, it is his body after all. If you could get your insurance to cover surgery without him trying those other meds I would go that route. It really is so great to not worry about the bathroom, and to finally be medication free!! I wish you guys the best of luck, and hope you get to move forward with surgery soon. Thank you for being a supportive spouse!!
      Emie

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