I am a happy, healthy, colon free woman! I am able to be a wife and mother again, and am able to participate in my life instead of spending it in the bathroom!
Some more about me:
I am able to take dance classes again and go on major shopping trips now that I am colon free!
No colon = No UC
My Wonderful Colon Free Life!
It’s Emie again with another update. It has been two months since my takedown surgery and I feel great! I can’t even begin to tell you all how my life has changed since I had surgery. I am back to work full time! I am taking a dance class! I can sleep through the night! I have energy! Everything is so much better. The only thing that I take now is anti-diarrheal/Imodium sometimes before bed or meals. I might not be able to eat spicy food anymore, or have a colon, but I have my life back. The only discomfort I have from time to time is some butt burn (irritation) but if I just remember to use some sort of cream I am fine.
My family is so happy to have me back, I have missed out on so much in the last 9 years because of UC. Now I am able to do anything I want and not be worried about finding a bathroom. I can get up in the morning and go run errands with my husband, he doesn’t have to feel like a single dad anymore running around by himself with our daughter, people can now see that he has a wife!
I was a bit concerned about my scars after my 2nd surgery because I ended up with a “dog ear” when they closed up my incision where my stoma was, but it has started to flatten out. I even sat out in my bikini in front of a bunch of friends and wasn’t too worried about it. We all have our own insecurities, so no one even noticed my stomach.
After my takedown surgery I was in the hospital for 2-1/2 days, i did end up with an infection in my incision that had to be drained a week later which hurt really bad, but it healed fairly quickly. I stayed home for 2 weeks and then went back to work part time and just last week I went back full time. I haven’t been full time in over 3 years!
People ask me why my doctor waited so long to do surgery, and I feel kind of dumb when I tell them that he wanted to do surgery years ago and I wouldn’t do it, especially since I feel so great now. Oh well, we all are different and I had to try everything before I felt like I could do it. I am so glad though that I did finally decide to have the surgery. I am alive again!
written by Emie
submitted in the colitis venting area
My Name is Emie, not Ernie, EMIE! I am a 29 year old wife, mother, sister, daughter, Aunt, and Shi Tzu lover.
Emile I am so happy for you! So glad to hear everything is going so well :) Your message is very helpful to me right now because I have my first of 2 j-pouch surgeries in about a week, June 10th. I know the first one is rough but I am ready to get this show on the road. It is great to hear stories like yours because I am getting a little nervous. I even just had my appointment to have my stoma marked. I will make sure and send in all my stories just like you sent yours because I hope to help people just like you have helped me. Thank you Emie you are an inspiration and much needed friend :)
Thanks Jackie that is so sweet! If you need anything, and I mean it just let me know. I have givin my personal email out to other women in this situation and I would love to help you in any way that I can. I probably don’t live to far from you being that Washington is fairly small so if you need a friend to be there with you through anything just let me know, my life is pretty flexible. I’m so happy for you! I remember getting my tummy marked, it was so surreal. I’m sure already you are helping people just in the fact that you understand others stomache issues. But yes, keep us up to date on your story and enjoy the nice Seattle weather we are having finally! No worries, it is going to be so worth it!
Ok that sounds really dumb to say Washington is small but I mean the Seattle area is all pretty easy to access……….so as long as you aren’t on the other side of the mountains. I am blonde and not good at geography but that even sounded weird to me…….hahaha! Sorry!
Inspiration Emie, so glad you’re so healthy :-)
Good luck Jackie x
I had an ileostomy in the 1970s and got my life back.
Living with uc takes a courage I didn’t have!!!
I agree with you; don’t suffer – have surgery.
Absolutely wonderful! Congratulations.
No colon equals no UC…you said it!!
Cheers, and all the very best. Get on with it!!
Glad you are still feeling good Bev!
I’m so happy for you, too. :)
That is such a great story to post. It was great reading something so positive. I’m happy to hear you are healthy and thriving.
Thank you Wendy! It took a long time to get there but I’m so glad I did it!
You should never feel dumb about battling uc, you gave it your all and surgery is always a risk, too…things often seem to happen when they are supposed to…all in the timing!
Best and continued good health. Enjoy your family and life! Shelly(in Maine!)
Ain’t that the truth, everyone does fall in to place when it is time. Yep gotta get off the computer and go for a walk with the family! So glad I can do that! God is good!
I just hope I can do as well as you. I chose the three step surgery and actually have step 2 (creation of J pouch Tomorrow June 5th, then the takedown in September. Had the colon removed in January. If I can feel as good as I do with a J Pouch as I do with the bag I will be so greatful. Congrats again because according to your picture you have a little that really needs her mom to be ready to go.
Good luck tomorrow mike! It might take a couple of months to get used to the whole j-pouch after your final surgery, but it will be so worth it! I’m glad you are feeling so much better with the bag, sounds like you have had it for quite some time. Keep us up to date when you feel we’ll enough to write!
Glad to hear everything is so much better now for you!! Congrats!! I have a few questions though. How often do you have to go to the bathroom now that your procedure is over? If you don’t mind me asking :)
Typically I go to the bathroom about 6-8 times per day. That varies though based on what I eat, how much liquid I consume, if I have caffine or alcohol. It isn’t the same though as when you have uc, I am in and out of the bathroom in minutes and there is almost no smell and absolutely no pain. I am able to sleep through the night and only take Imodium if I am going to be out and about all day, or driving a long ways. Over time I won’t have to go so much, but it takes time for your jpouch to stretch out. If you have any other questions feel free to ask. Thanks for the kind words!
My daughter had the surgery when she was ten and now she is twelve. So it’s been two years and she is doing really well. She is very active and on a soccer club team in Pasadena, CA.
We have hiccups though and I was wondering if you get bloating or cramping ever. Our daughter takes a probiotic daily and we have her Gluten Free. She can eat almost anything–nothing spicy. She goes to the bathroom maybe about five times per day–if she is home. If she
is at school it’s about three times.
Any information on how you have been doing would be appreciated.
Wow, you have one tough little girl to go through all of this at such a young age. I am very happy to hear that two years later she is doing really well. I do get bloating sometimes, usually if I have eaten granola bars or lots so sweets or dairy. I was on a very strict diet prior to surgery, and since surgery I have gone off of it completely, so it could have to do with that. I don’t have much cramping though. Does she drink carbonated drinks? I know those are supposed to cause bloating and gas. I will have to look through my paperwork on diet tips and let you know some things I was told to avoid and maybe that will help. I also try not to eat greasy foods. I know if I have caffeine or too many starchy foods I get a little bloated and gassy but nothing too bad. Tell your daughter she is such an amazing girl, I don’t know if I would have been that strong or brave at 10 years old, I barely was at 29! Sorry if this isn’t any help, I will get back to you soon with better information.
Really glad you’re doing so well Emie! Great to hear, love your attitude about it all. I wish you continued success!
Right back at ya! Thanks!
At home now recovering from my second surgery of three. This recovery is a bit rougher than the first. The creation of the J pouch took 7 hours in surgery. Doc said it was due to my height and just taking th eextra time ot make sure things fit properly and no leaks. They also had to repair a hernia whiel in there and sent me hone with a JP drain which is aweful, can’t wait to get that sucker out next week. I am grateful for one thing, It has been 9 days since my surgery and I have yet to pass anything through the J pouch liike many say they do from time to time. Sureon says everyone is different and not to be alarmed. I will agree with Blake that this second stoma is a much crappier version than the first. Thos who chose the 2 step will not understand this but the loop stoma is a nasty looking thing. Anyway, how long does it take before you get back to work after the reversal knowing things may be rough for a couple months??
Hi mike! Hope you are feeling better by now! After my reversal I felt great, I think I was back to work in two weeks and back full time in two months or maybe less. If you have any other questions feel free to ask!
Thank you so much for sharing your story. I am heading for surgery very soon. I dont know anyone personally that has been thru it. I am on high dose of Prednisone and have a call into GI doc right now. I am sure i will get admitted for some IV fluids and such. I cant live like this anymore. Have had consult with rectal surgeon and he feels it is time also.
Big decision and very scared, so i appreciate your story.
If you have any questions feel free to ask, it is hard to go through by yourself. I’m so glad my story has helped you!
Hello, And so glad this is going well for you. My son is having a tough time gaining weight and has to get up several times in the night, DO you have any advice? Thanks,
Has he had the surgery, sorry I’m a blonde so have to be very clear here, hahaha. I started gaining weight about a month or two after my takedown surgery. I basically started eating whatever I wanted to so now I actually have to watch it so I don’t gain too much! To sleep through the night, I would say take two regular imodiums before bed. Try not to eat too late or drink too much liquid before bed. Most days I get up once in the night, if I’ve had too much caffeine or food too late it could be two or three times. Imodium really is your best friend though, my surgeon said to take it before you eat to slow things down, so I do that at work and then before bed and I am good to go. Basically right now let him eat whatever he wants, as long as it doesn’t upset his stomach and take Imodium. If you have a Costco membership buy it there it is like five dollars for two bottles of 200! That is a great deal! Let me know if you have any other questions.
Thanks. My son did have the surgery in APril. YOu mentioned you eat anything – does that include nuts and seeds now? And do you eat vegetables and fruits again too? Thanks.
Yep, anything. I try to not eat too many mushrooms now, but I will eat them if they are very small and I make sure to chew them as much as possible. Tomatoes bother me if I eat too many at a time. Everybody is different so try only small amounts to see how he feels before digging in to something too much. Hope he is doing great!
Hi Ernie,im happy to read about ur story’my wonderfull colon free life’i dont know how to start my story…m 34yrs old m UC is daignose back in 96/97 when i was in my 11standard d symptoms started whn i was in 8standard..let me cut it short from that yar on i get a severe relapse every 3years. 2000,2003,2006,2009,2012sept was very depress even feeling sucidal.infact 2006 floks back home think im not going to make it, my blood hb count was 6 m under weight 45 my normal weight 56-58 kilogram according to my vital satistic .m writing to detail now letme come to the point now since may this 2013 i gt bleeding again relapse its been two months m getting very frustrated at times i take predisalone,messelamine, folic acid in 2006,2009,2012 remicade the side effect in 2009 i get cyst in my ovary m not yet married so my doctor feels m young for surgery as it might be difficult to conceive,but in 2012 remicade didnot work but maricle happen i thank Almighty for the u turn during that i was considering surgery but it got healed but now i begin to think God knows me well n want me to do surgery my boyfren is so supportive he said il be with u n evn if it requires adopting baby he is fine.but after i read ur stories m so positive now because im a person who lives active lifestyle love eating out cant realy watch my diet i do take supplement n healthy food but love street foods i live in mumbai my family lives in the other side of india manipur a small town where the infrustructure is still bad,m mainly in mumbai also for being a colitis patient its easier wt good hospitals n doctors around.u said you go for dance classes i too love dancing my concern is ihv taken up a fitness career n ready to help people like me n who have health issues with thr excercises so will i be able to carry weights once im without my colon n will i be able to go bungee jumping,cycling,dancing,swimming?n m planing to go for driving classes as i just bought a car?i,m a person full of dreams to accomplice all what i wanted to do will it happen even without my colon?n will i be very thin after operation i wanto mantain 56kg weight well with flat tummy,n will i be able to do belly dance(arabic belly trust movement)?i would be glad if you can answer my doubts..thank you so much,im looking forward for your reply..my last question how long will it take to fully recover imean including the second/third surgery well the whole procedure?im checking out all the hospitals n deciding on doctors now,because my GI was not a surgeon n i like a soft spoken n caring nurses around when im sick
N please understand my detail yet bit messy typing m using my cell phone so n this time im going to the hospital n do the surgery without my sister my boyfren will be their,do you think m doing the right think in choosing hospital with a good stoma nurse?
Hi Ernie m eagerly waiting for your reply today m visiting one hospital close by to check on what they can offer for my colon surgery.what kind of surgeon would be best for this surgery?i only know gaenac n gastro doctor n physician.
?Ohhh so sorry keep writting Ernie..Emie
Sorry to take so long to reply, life has been busy. I can’t tell you exactly what to expect, I can only tell you what I experienced. Everyone is so different it is hard to say how long your recovery will be. I honestly didn’t do much research in choosing my surgeon, my gastroenterologist referred me to the top surgeon at the university of Washington here and I trusted him. I’m not sure Bout bungee jumping, but I’m sure in time you can lift weights, swim, dance, take driving lessons, whatever you want to do. Just be sure you talk to your dr Bout your plans and mention it to your instructors if you have any concerns. I hope you have had much luck finding a good surgeon. My experience was great and I hope yours is too.
Hi Emie,thank you so much for your reply.well m still waiting and finding the right surgeon my GI is a physician n he will suggest me the best surgeon.well im from india,i live in mumbai city due to my UC problem coz in our town they dont know much how to treat.but here in mumbai its almost as gud as in US but cleanliness etc is still abit of a concern that is why im looking for gud hospital.well m not blaming them its a city of millions of people:-)i would like to be positive and see the brightside of things i know it will be months of suffering but it is way better then my sufferings of the past 20 yrs with relapse of evry three years or at times a year.of late its been awfull and with the problem the steriod gives me and the feeling of remembering when it will relapse?ithink surgery for me would be better option and i hope to be able to dance and look forward to what my life without UC has to offer i bet it will be way better then living with UC.
thank u so much dear but.i m also thinking about surgery but i do not have money .i m relating to poor family.can anybody help me plzzzz.
i m 25only.can anybody tel what will be the cost of total surgery in india.plzz indian
I think you should go to vellore,Tamil Nadu CMC its cheaper their i dont kno exact cost maybe 4lakhs in mumbai i estimated to b 6 lakhs d whole procedure but i endup spending 9/10 lakhs coz ihad infection n d anti bac medicime cost me lot, m waiting for tk down d second surgery now ihv m stoma bag il kp fo 3 mnths n whn doc says then il go for it
I felt compelled to reach out to you and let you know how much your testimonials have meant to me. I found your first step testimonial in March – and have read it many times. I was real excited when I found your update since takedown surgery. I am going in 9 days, Sept 12, 2013 for the first surgery- removal and J-pouch reconstruction. I have battled the disease for 3 1/2 years and took 15 pills day, self administered Humira injections, spent thousands of dollars on medical bills and medications only to end up here. I felt a connection to your story, as you are a mother and a wife just as I am. I’m 39 years old and have a really supportive husband and 3 daughters 10, 8, and 3 1/2. I especially understood the part about your husband being a “single dad”. This disease has been holding me hostage to my house…just because the idea of a sudden and embarrassing incident is too much to bare- and just easier to stay home. I have been caught in situations before, and it is a terrible feeling. I’m nervous, scared and excited and I have chosen to only read positive testimonials, like yours. I don’t want someone to sugarcoat the difficulties that are expected, but I appreciate your positive attitude but still keeping it “real” at the same time. I hope things go as smoothly for me as it sounds like it went for you- not that it was easy- I’m sure there were hard days, but I hope I can handle it with the same grace that you have. Your story has given me strength to think that I can do this. I will think of you and the others that have helped me through this hard time.
All the best to you.
South Lyon, Michigan
I’m so happy that my story has helped you. I supposed by now you have had surgery and are hopefully at home recovering and feeling much better. I hope that like me, you now realize that the fear that kept you from having surgery years ago is now not such a scary thing. I remember feeling so much better by the first week that I couldn’t believe I had put this off for so long. Of course there were mornings when I would attempt to change my bag and become very frustrated and start to cry because my stoma wouldn’t stop spitting stuff out, but then I would just take a deep breath and sit down on the floor and finally get it on. Just remember, it will get better, it will get easier, and by the time you get it all perfected it will be time for surgery number 2. I am so happy for you and your family, you are so brave to do this. Remember to smile, laugh, relax, and just breath. Use this a good excuse to go shopping and get yourself some comfy leggings and big sweaters and scarfs, that was my way of hiding my bag. If my stoma was noisy at the dinner table, as it liked to be, I would just look at my daughter or my husband and say, “did you bring a frog to dinner?” And we would all laugh. I made sure I was strong for my family and my friends, I never like to be the Debbie downer of the group and really, having uc was a blessing. Life is so great now, and I am so grateful that I had a disease that was curable. The fear kept me from the cure for a long time, this has been a life lesson to not let fear control my life. I’m so glad I could help you and if you ever have any questions please don’t hesitate to get my email address from Adam, I would love to help you in any way. Happy healing!
I am 99% sure that I will be having surgery to remove my colon ,but the thought of possibly having a colostomy bag the rest of my life scares the crap out of me (literally). I was just wondering how you are doing a year later from your surgery.
Thanks for posting about your surgery experience. Your positive experience has definitely been uplifting especially for me as I am trying to take that leap and get my life back after 5 years of complete misery.
I replied but I don’t think I replied right, so see below…………….
It has been just over a year since my last surgery and I have to say, best decision ever. Time helps you forget all the crap you have to go to to be happy and healthy. I didn’t love having the bag for the few months I did, but it was so much better than pooping my pants all the time. I haven’t pooped my pants in over a year. I am able to do pretty much anything I want to. I still get scared on road trips, but the fact that I can control my poops is the best. I have had c-diff, but even that wasn’t the worst once they figured out that was what it was.
I think if you do go ahead and make the decision to have surgery, you won’t regret it. Make sure you find an excellent surgeon and read up as much as you can. The scars and all the pain has been well worth it to feel as good as I feel now. Best of luck to you in you journey. If I can help you in any way just let me know.