Me with my daughter!
Introduction:
I am 30 year old female I live in Fremont CA….. I worked in a emergency room for 6 years. I am married to a great guy and together we have a 9 year old daughter.
Symptoms:
none!!!
Colon Free
I really hope my story can help…….
It was 4 years ago when I first noticed some blood on my stool. After a colonoscopy the Dr. told me I had UC . I was prescribed Ascol and it did its job for about 6 months. For the next 3 years and many Ascol pills later I was still bleeding everyday. The Dr. said it was normal …..
Ok now let me fast forward to last september 2011 when the bleeding was out of control. I was having up to 18 bloody bowel movements a day (I was keeping a chart). I couldn’t even leave the house. So finally weighing in at only 98 pounds I was hospitalized for a week and given 2 units of blood and was given another colonoscopy. I was put on Predisione and was told that I might have to start Remicade. After a long 5 months on Predisione I was doing very well. Only one bowel movement a day and no Remicade would be needed. Everything was going ok with my colon, But the rest of me was falling apart. my body hurt so bad I could barley walk, I had no energy to do anything, my hair was falling out, I developed moon face and I couldn’t stop eating… but the worst of all was the mood swings… ugh!!!! I’m not trying to scare anyone, I just want to educate people on the drug so they will know what to expect if they ever have to take Predisione. It might be a very harsh dug but I does help.
I still remember the day I finished my Prednisone pills. I was so sad because I knew what was about to happen. I had tried every diet and almost every medicine out there, I just knew I was going to start bleeding again. It took 3 days after I stopped taking Prednisone before the bleeding returned. A month later I was back in the hospital. They had me on a TPN drip for about 3 weeks. And after my 3rd colonoscopy, 1 Remicade dose and 3 more blood transfusions they decided to remove it. Believe it or not I was thrilled! I didn’t care…. I just wanted my life back.
My surgeries were done in 3 parts. I had my ostomy for a total of 6 months (her name was Penny). I’m not going to lie it was a hard road… but well worth it!!!!!. Its been about 6 months since my reversal surgery and I feel amazing! I have about 6 bowel movements a day, none at night. I finally have my life back! The one thing that still amazes me is the fact that I can go to the bathroom and not worry about seeing blood. I really hope this story has helped people. Trust me I know how scary and depressing it is dealing with ulcerative colitis. Thanks for listening.
Sorry if the title is offensive. My sister made it up to make me laugh while I was in the hospital.
Medications:
No medication ever worked for me except Prednisone…… and even that stopped woking in the end.
written by Nichole
submitted in the colitis venting area
I am 30 year old female I live in Fremont CA….. I worked in a emergency room for 6 years. I am married to a great guy and together we have a 9 year old daughter.
Hi Nichole,
Yours is an AMAZING story! I assume the pic of your daughter and yourself is after the colon removal…you are gorgeous (so is you little girl), and it inspires me in that if I ever have the surgery…I may look as good as you do?! Wow!!
There is nothing more wonderful to hear from someone who is so happy, after going through all of the trials and tribulations of UC. UC is NO FUN.
Your story has made my day….completely! You are correct….it WILL help many people!
Thank you so much,
Bev
:)
Thanks Bev!
That was such a nice thing to say! Thats exactly the reason why I wanted to write my story. I don’t want people to be afraid of the surgery or having an ostomy. I was lucky because I know a girl who has had her Jpouch for 10 years now, so she walked me through everything that was going to happen before and after my surgery. Hopefully you will never have to have your colon removed but if you do just remember not every story is a scary one… some have happy endings.
O and yes thats picture was taken about a month ago! :)
Congrats and thanks for sharing your story.
Enjoy your new found health and family.
Love the title…pass it along to Curtis!
Best, Shelly
That is great to hear you are doing so well now and especially sleeping through the night! I have a 13 year old son who had his colon removed 3 weeks ago. He is still going to the bathroom 20 x a day and is scheduled to have a pouchoscopy in 2 days. Can you describe what your recovery was like – how long until you got to the point you were at 6 bms a day and none at night? Do you do anything special to not to go at night? Stop eating at a certain time, take imodium etc..? And since you had your takedown did you ever get pouchitis or a blockage? Anything that worked to help reduce the frequency? And do you take probiotics? Thanks, very appreciated.
Hi PKh,
To tell you the truth from the first day after my surgery I was only going about 6 times a day. The most I would ever go would be about 15 times a day. It sounds like your son has pouchitis, it is very common at the beginning of the recovery process. I started taking VSL3 probiotics about a month after surgery. I also notice that when I eat big meals it makes things worse. Make sure he is eating small meals and no fiber yet. My Dr. told me its better not to eat late at night so I stop around 6 or 7 because then I would have to get up around 3am to go to the bathroom. Im sure once the Dr. gets the pouchitis under control things will be a little easier for him. Good luck!
Thanks for this info. Really gives hope to hear it. Follow up re VSL3 doasage. Do you take 10r 2 double strength packets or if the capsules, how many? My son does not like the powder (or the cpasules) but the comparable capsules would be 16? It seems VSL3 is the only probiotic that has actually done studies on its work for J pouches though. Also he is not eating fiber yet — but curious have you been able to introduce that back into your diet? And I guess bigger meals bring on more BMS. Do you get stomach aches at all? Thank you.
Hi PKH,
OK so the probiotic I take is VSL just the regular capsule, I take one in the morning and one in the night. And to answer your question about introducing new food to my diet…. Well….. I did not follow directions and just started eating whatever I wanted, and it took me loner to figure out what would set me off. I learned I do not do well with sushi, pizza, salad, soda, chocolate, nuts,coffee, broccoli, fried food, garlic. I do not eat raw veggies, whole pieces of fruit, coconut, hot dogs…. you get the picture! It took me About 6 months to realize I was doing it all wrong, and when they say eat small meals they mean small meals! You cant eat the way other people eat. When you try and eat large meals it seems like the food wants to come out all at once. I don’t know if this helps but I keep vaseline on the back of the toilet and put it on every time i have a bowel movement (and when I say bowel movement just keep in mind that nothing that comes out of me is formed yet, if you know what IM talking about) Also I really only get stomach aches when I hold it in. That will create gas and hurt your stomach. Please feel free to ask me any questions.
Thanks again. How do you manage not to go to the bathroom at night? How many hours of sleep are you able to get? This is proving challenging (though my son is much better – you were right he had pouchitis…)Thank you.
And one more question -my son has to spend a long time on the toilet each time he goes – any suggestions about that?Thanks so much for offering to answer all these questions. Your info has been very helpful.
Hi Nichole
I am about 4 weeks out from my second surgery which as you know is the creation of the J Pouch. I will then be scheduled for he reversal soon after I recover from number two. My question(s) to you are how is the recovery after the second surgery? I am hoping mine will be easier since I am much healthier now since I have that nasty ole colon out of me. I feel pretty good and am used to the ostomy which is named Sparky, but I still do not like changing it. After your second surgery did you ever have any urge for a bowel movement even though it was not hooked up yet, a couple of people have told me they would actually pass some mucus once or twice a day. I am glas things are working our for you and hope mine goes a smoooth as yours does. Thanks for sharing your story.
Mike
Hey Mike,
Congratulations your almost done! OK so Im not sure how your 2nd surgery was done? My 1st surgery was done laparoscopic (easy recovery) but my second surgery I was cut from belly button down my whole stomach. My 2nd recovery was definitely harder then the first. It took me like 3 weeks before I could walk upright, I had to use a walker even when I just walked around my house. Sorry to hear you don’t like changing your ostomy…….. Its weird but I liked changing mine, I would change the whole thing every 3 days and change the bag everyday. And yes I passed mucus all of the time from my first surgery until my last surgery. After my first surgery (when they removed half of my colon) I was still passing blood and a little mucus, the blood eventually stopped after my second surgery, but the mucus still continued. I know it sounds weird but having the urge to use the bathroom and passing mucus is a good thing, and what I mean by that is it lets you know that you still have control over your muscle down there. At least thats the way I felt. Your last surgery is going to be the easiest. And remember small meals!!! good luck!
Nichole, Thanks for the info. I had my entire colon removed (laproscopic)on my first surgery and have not had any urge for a bowel movement at all. My second surgery is also scheduled to be laproscopic and I hope it stays that way, im not a fan of the orizontal cut surgery. I will keep you posted.
Mike
Nichole thank you so much for your post! I am 31 and having my colon out in June ( 2 step j pouch). Hearing your story and seeing that your are my age and that your story is so positive helps take some of my stress away. This website is a blessing because it lets you know you aren’t alone. You look great and your attitude is amazing! Keep shining :)
Hi Jackie,
Good for you! Take your life back! It going to be a long little road…… but trust me you will be fine!
Thanks for posting this. I am still going to do everything possible to keep my colon in, but reading about your experience helps, incase I need to do it.
Hi Nichole,
I am right there with you girl! I had my takedown surgery less than 3 months ago and I am so happy that I had surgery! Such a huge and scary decision to make but so worth it. I am so happy for you to have your life back! Thank you for being so open and posting so much information, I think that is why we go through things like thIs, so we can help others out, and you are helping so many.
Thanks so much!
Emie