Hi I’m Jackie. I’m a 25 year old woman child from my native state of Michigan. I have a bit of an interesting UC story so bear with me while I get my intro out of the way. I was officially diagnosed with UC in May of 2009, but had symptoms for easily 10 years. In October 2006 I was also diagnosed with Multiple Sclerosis. I’m a bit of an auto-immune allstar. Long story short in 2009 I was admitted to the hospital 4 times and the ER 6 times for my UC. Asacol gave me a pericardiac effusion resulting in a lot of pain and emergency surgery around my heart.
After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ‘09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI then told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say I was a bit conflicted.
I met with Dr. Remzi in Feb 2010 in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.
So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.
oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday!
p.p.s. I make typos a lot. Deal with it.
p.p.s.s. Why Blood, Poop, & Tears? If you have colitis or crohns, you already know. If you don’t have an Inflammatory Bowel Disorder (IBD) well, not only are you missing out on having bloody poop, but you’re also missing out on the emotional roller coaster and humiliation that accompanies it. I personally felt the title pretty much summed up the past year or so of life quite nicely.
February 17, 2010 at 9:23 pm
Hi Jackie,
I work with your friend, Meghan Kelly. My daughter, Sarah also has MS and has suffered from what she thinks is IBS for years. I was touched by your story and wish you all the best.
February 17, 2010 at 9:26 pm
Hi Nancy, I’m glad Meghan passed on my info to you! Good luck to your daughter this is a tough road. If shes interested, I also have a blog for living with MS. http://www.TheMSBlog.com. This blog just got posted today so hopefully you’ll come back sometimes! Thanks.
February 20, 2010 at 1:39 am
Hi. So glad that I got your blog address. Can I add you to my blogroll? I have found j pouch life to be a saving grace in answers, etc prior to surgery. That is where I found you. I have just finished up part two of my two part surgery. If you want to read more of my story you can stop by my blog. It by no means has anything to do with the www. address part of it but it was a blog that I had up and running for a weight loss blog contest I was going to due and than boom I was hit with the news I would need surgery. So it kinda became my outlet.
I’ll be back. Thanks for writing!
ML
March 14, 2010 at 4:26 pm
I also have MS and UC. I am not doing surgery though. I am trying Tysabri. Tysabri is almost never recommended for UC because its more dangerous than surgery. It is rarely recommended for Crohns except as a last resort. It is even considered a last resort for Multiple Sclerosis.
HOWEVER….not being able to tolerate the CRAB drugs Tysabri it is….and it does seem to be highly effective for Crohns as well as UC in a small scale trial.
Perhaps you should consider it as an alternative to surgery? Nobody will recommend it just for UC, but it might cure your UC as a welcome side effect or put it into remission rather. You would have to get it for MS specifically.
It is a risky drug. 1 in 1000 get a rare opportunistic brain infection from it. This medication can in rare instances lead to death….But its the single most effective drug for MS. Depending on how serious your MS is and how willing you are to live as a cripple the risk may be worth it.
March 14, 2010 at 11:47 pm
Hi Nick,
Thanks for your comments but I’ve already discussed using Tysabri with my doctors. Neither of them would approve not to mention I dont want to try it. My MS is in complete 100% remission and has been for years so tysabri is too harsh for it. Not to mention the though/chance of PML is too much for me. I specifically had my GI tell me he wont give me a drug tha could kill me when there is a surgery that could cure me. Period.
April 8, 2010 at 1:43 am
JAckie,
Thank you so much for this post. As a UC sufferer for 25 years I could not describe this disease in any better terms than you have. Thanks so much for your candor. More people really need to understand what living with this horrifying disease is like as I would not wish it on my worst enemy alive. I am on the surgery path myself in the near future and am just as frightened as you were. Your blog and comments have really helped with my decision.
I am wondering why you did not have the surgery laporscopically as they offer that at many places now and I am surprised Cleveland clinic did not offer it as they are the mainstay in this surgery.
I hope you are recovering well and look forward to your future posts.
April 8, 2010 at 3:12 am
Hi Kat,
Thanks for your post! I am recovering pretty well these days, the incision is still really gross looking but you can see that lol. The surgery was supposed to be lapro, and it was planned to be that way. However, since I’ve gained so much weight from the prednisone and also since I was on the prednisone for so long, my tissues were pretty week. I’m not sure how all that totally factors into the decision to cut or not…but I know with those two things, they generally cut.
Where are you located? Do you have the option to find/talk to a surgeon that you trust and that is experienced? Good luck to you and keep me posted!
April 21, 2010 at 7:49 pm
Hello Jackie, my name is Mike, 24, Akron, OH. I will be starting tomorrow morning my first of the same three surgeries you’re going through. Also, with Dr. Remzi (awesome dr.). I pretty much followed the same course in regards to the failed medications and such. I have been on Remicade for about 3 years now and it has decided to stop working as well. So, with that being said now it’s time to chop it out. Everything that you wrote I related to. The yes I’m doing this, nawwww, I could put it off, to the back and so on so forth. Anyhow, I was initially scheduled for last Thursday but Dr. Remzi called me Wednesday morning to cancel. I was very much ok with that. I am supposed to be getting the choppin’ done lapro, so, I’m holding my breath that he can still do that. Anyhoo, I just wanted to thank you for your updates and humor on what to expect. I wish you a speedy recovery to get back to “normal”.
– Mike
May 18, 2010 at 2:46 pm
Hello Jackie!
I was 20 when I was diagnosed with UC and had the J-pouch procedure done. it’s been 13 years and no problems since. Keep your head up! This blog looks great and I look forward to your updates.
-alvaro salinas jr
June 5, 2010 at 1:15 pm
Hello Jackie,
I am having the 2 step j pouch starting on Monday the 7th at Mayo in Florida. I have had UC for over 17 years, so I am certainly looking forward to fixing my problem. Good Luck. Thanks for the blog.
June 22, 2010 at 12:41 am
I had UC for three years and had a 3 stage j-pouch surgery done in Dec 1987, May 1988 and August 1988. Have had no problems with pouchitis. Have had 2 daughters (naturally) the first being born 3 years after the final surgery. I also had a sister who had MS. Auto immune runs in our family…I have a cousin with Crohns.
I wish you all the best with the surgeries.
I no longer live with bloody poop, pain, cramps, diarrhea, diapers, or drugs.
It was worth it! Good luck!
June 22, 2010 at 12:20 pm
Auto immune disease are so dang frustrating. Especially because once you have one, you’re so prone to have more. Not to mention they have no clue how we get ANY of them….awesome.
I’m hoping the next two surgeries move pretty nicely. I’m getting more nervous about these ones. I never get nervous for surgery, but the whole, more pain, and diaper potential freaks me out.
Sorry to hear about your fam. That sucks. No one, in either sides of my family have any auto immune diseases. Apparently I got the brunt of it all for everyone, which from my experience…I’d rather me have them all, then anyone else have them.
June 23, 2010 at 4:40 pm
Hey mike,
How are you doing after your first step? How did you feel after surgery, did they do it lapro? blah blah blah.
-jz
June 23, 2010 at 8:41 pm
Not too bad at all. I’ve grown fond of Rex (the name of my stoma), I didn’t have much trouble at all after the first surgery so I’m very thankful for that. I was out of the hospital within 72 hours. Yes, done lapro, so that was a relief. Appearantly, that was the first question I asked when I woke up. Uhmmmm, I did get some disheartening news on June 2nd when I went for my follow-up w/ Fez and Vic. My second surgery is now in November, he doesn’t want to risk any complications before my wedding (10/16) so that’s when it’s scheduled. That’s that. Oh, and I read your one post about potentially stick with the bag, I couldn’t agree more, it’s not that bad once you get used to it. No emergencies anymore. Best of luck to you on your second surgery, I’ll be rooting for ya.
July 24, 2010 at 8:16 pm
Hi!
I love your blog. Thanks for writing- and for your humor!
August 17, 2010 at 9:46 am
Jackie,
I think you are just great, very funny and just flat out real. You say things that most people with UC won’t. You are very much like me when dealing with these issues. It just sucks your from Michigan, go Bucks.
I am having my J-Pouch surgery in a couple of weeks. I am 25 and have had UC for four years now. I can’t wait to get my life back.
Also, thanks for bringing to light Camp Oasis. It’s seems amazing and I am already researching it and hopefully will be apart of it!
We gotta keep our humor with this disease, so thank you for not making me feel alone. I am a big softie and teared up a couple of times reading through your blogs.
Robert
December 22, 2010 at 12:11 am
Robert did you have your surgery at CC? Who was your surgeon? How did it go??? Are you gonna do Oasis? If you do it, Michigan is the closest camp to Ohio!!!
February 6, 2011 at 9:35 am
I was diagnosed with JC when I was 11 and had to have an emergency surgery due to toxic megacolon. I have had a Jpouch for 21 years. Seven years go I was diagnosed with MS. I am managing well but some things I am having to research myself mainly muscle control. The J-pouch has been overall wonderful for me!
February 8, 2011 at 1:13 am
No Lies, I kinda always wanted toxic megacolon because I think it sounds like a power ranger. Maybe I will dress up like toxic mega colon for halloween next year.
I think I got an email from the guy who referred you here.
You my friend, are way farther into this thing that I am. I’ve had colitis diagnosed since 2009 (surgery within the year) and I got MS in 2006. You’re an old pro….would you mind if I ever had a question or two I asked you?
Did you ever have any relapses with your MS due to surgeries or anything? I feel like I’ve been lucky because I haven’t even heard from my MS in years.
I take no meds for it…though I have a fridge full of Copaxone. I just can’t seem to get into it.
Are you on anything?
February 17, 2011 at 8:02 pm
Hello Jackie, I am a second year student nurse in England and I have a presentation to do on “Continuing Care Priorities for a Person Following Ileostomy Formation”. I would love to use some of your observations and experiences to make my presentation real and relevant. Would that be ok please?
Also do you have anything to say about this with regards to the support you received or the sort of support you should have received ie emotional, practical, etc etc in order to help you adapt to your new situation and lifestyle.
I would like to say you are a great inspiration to all and I wish you the very best of luck and happiness for the future
Kindest regards
Annette
February 18, 2011 at 4:06 pm
Hey Annette,
Please feel free to use anything on this site. Is this a verbal presentation or with slides or something? I’d like to see it when you’re done if I can, it would be interesting.
Also in regards to support, there is so much to say. I have had a ridiculously awesome support system. My family has been so amazing through all of this. Then to top that off, I had a benefit to help me raise money last year where I had almost 200 people come, who I know to help me. That was one of the most amazing things I’ve ever experienced. Support is so huge through this. But almost as important as family support is meeting people with ostomies or jpouches. I have met SO many people that have one or the other and they have been the BEST resource for me through this. As much as a family can try to understand, they never will, and those people can. So that covers emotional and practical support. As for significant others, I think its a toss up. I’m not married, but I have a boyfriend who isn’t particularly supportive, and thats been tough, but its also made me strengthen my other relationships. However, if you’re married and your SO isn’t supportive, that would seriously drive a divide between you two. I think there could be better educational support but I’m not sure of the logisitics of all of that. In needing to find better info, or techniques or something…I’ve gone to the internet. There are people out there who have videos like Dennis and Nadia (http://ucvlog.com/) who will actually show you how to do things. I’ve found the internet to be a wealth of info. Mostly because jpouching and ostomies are not a hot topic, so the people who are posting about this, most often are people who have one or the other.
Thanks and good luck!
February 23, 2011 at 3:15 am
I really enjoyed your reviews of products…I’m a former J-Poucher (15 years) who lost his J-Pouch and now is a permanent ileostomy.
I came across your blog because I’m trying new products and am now trying the SenSura Click bag. My question, though, as silly as this might be: I want to love this product but am having trouble with the opening that you so loved…making me think I’m doing something wrong.
The opening never feels completely dry. I dry it off nice and good after emptying, but when I unroll it a few hours later, there are wet spot and residual poo. I just can’t seem to get the great, clean seal I got with a clip-closure.
Any tips? More details on how you empty/reseal this bag?
(Hoping your blog lets you see the e-mail address I typed in…but I’m not posting it in this so the bots don’t pick it up for spam purposes.)
Thanks again…great blog.
:TODD
February 23, 2011 at 3:24 am
Hey Todd,
Ok I have had that issue, let me see if I can put this into words. Sometimes when you open the bag to empty anything that is in there can get trapped in the corners of the plastic part that flips open (make sense at all?) so when you go to close it, there is some on the back side of the flip piece (still following?) So just clean out the inside as best as you can, stuff the TP in there swirl it around, the whole thing, then unvelcro if from the back, fold it over and make sure there isn’t any poo stuck under there.
I hope that made sense.
I have never used a clip bag, it freaks me out. The reality is this seal is just as good. but it doesn’t completely stop the flow of poo the way a clip would, thats why it has to fold a few times. It might not be 100% clean in there because of that but it wont go anywhere. Maybe it takes practice? I dunno? Give it time…I really do stand by it being the best.
February 25, 2011 at 3:17 am
That did make sense….thanks so much for taking the time to respond.
I’ve done a little bit better with this bag the last couple days…love the wafer and love the idea of the clip-less bag so hoping I can make this work.
Keep up the great work on the blog…it’s one of the best I’ve seen on our shared illness.
:TODD
February 25, 2011 at 10:43 am
Jackie I found I has IC in Oct ’89 and had my emergency surgery in Feb ’90 I was 11. I found out about my MS u yrs ago. Luckily for me I didn’t em em both at the same time!
Jealous to hear ur MS is 100% in remission! Mine is definitely not! Never in my life did I think being able to feel my feet would be so exciting! I give myself a shot of Avonex once a week. I find giving myself a shot is like intentionally slamming my fingers in a door… I know it is gonna hurt but I do it anyway!
Feel free to ask anything I’d be more than happy to answer! 🙂
March 7, 2011 at 9:09 pm
Hi Jackie
Thanks for your reply I am going to start the presentation (slides) this week and your comments are very helpful. I will certainly email you a copy of the presentation for your comments and pointers. Were you given any support from the nurses with regards to education and information about the procedure itself and aftercare etc. If so what were you told? Did you have any issues with the ileostomy itself, which perhaps could have been avoided if you had been supported or informed more?
Well done for everything you are achieving and hope you get where you need to be.
Kindest regards
Annette
xx
March 16, 2011 at 8:39 pm
Hi Jackie,
I’ve been following your blog for about a year now and just wanted to wish you good luck with your surgery tomorrow.
While I haven’t had it as tough as you I’m in a fairly similar situation. I was 32 when I had a total colectomy with Ileostomy in January 2010 due to Ulcerative Colitis (first major flare up in November 2009). I then had an emergency laparotomy in March 2010 for a blockage in my small bowel due to adhesions. I’ve taken the decision to go for the J pouch procedure too and I’m hoping that the first part will happen around June or July this year.
I’m sure everything will go well for you tomorrow. You’ve really put in a determined effort to get your body ready for the op and that is really going to stand to you.
Thanks for blogging!
Wishing you Health & Happiness.
Paul
March 16, 2011 at 11:56 pm
Hi Paul!
Thanks for reading this sucker…I’ve always wondered if anyone has been around since the beginning. I met with Dr. Remzi today, and while we’re all hopeful, he didn’t make any promises about anything. He basically said that he is confident that he can do the procedure as we hope it will happen, but there is always “the god factor”. So we shall see.
But as always, you know Ill keep you posted!
Thanks again
-Jackie
March 28, 2011 at 2:19 am
Jackie, I was told of your blog through a friend at CCFA, and I have to say a BIG THANK YOU!!!! I have laughed out loud and been able to relate to most of your situations. I have had Crohn’s since 1995, been diagnosed with diabetes due in part to long term steroid use, have a clotting condition (thanks dad), pyodermas on legs, one type of wound under my wafer too, erythma nodosums as well, really killer arthritis…blah blah blah. No MS, but we could and should compare notes. Had an Illeostomy and colectomy December 2010 and so far so good. So I can totally relate to the good feeling of life without urgency, blood in stool, and finding every clean bathroom from here to PGH and back.
I could go on and share stories, but I just might start blogging about Life with Lizzie (my stoma) as well. Thanks for the inspiration and the stories and good luck with your recovery!!
Keep it up Girlfriend!
Julie
March 29, 2011 at 6:12 pm
Hey Julie,
Thanks for your comment. What CCFA did you hear about me from? It sounds like you’ve had a real suckfest too…how are things for you now? Hopefully they are better!
Thanks for the note…
-Jackie
March 31, 2011 at 10:47 pm
Jamie Roades from CCFA western PA/Pitts. office. Someone turned it on to her and she told me about you. I have told many about you since then…Keep on keeping on…it is awesome what you are doing. Yes, I am feeling much better, except for the arthritis/bum knee…but I can deal. Have dealt before, right?
Best wishes,
Julie
May 8, 2011 at 10:16 am
Hello Jackie, my name is Mike, 24, Akron, OH. I will be starting tomorrow morning my first of the same three surgeries you’re going through. Also, with Dr. Remzi (awesome dr.). I pretty much followed the same course in regards to the failed medications and such. I have been on Remicade for about 3 years now and it has decided to stop working as well. So, with that being said now it’s time to chop it out. Everything that you wrote I related to. The yes I’m doing this, nawwww, I could put it off, to the back and so on so forth. Anyhow, I was initially scheduled for last Thursday but Dr. Remzi called me Wednesday morning to cancel. I was very much ok with that. I am supposed to be getting the choppin’ done lapro, so, I’m holding my breath that he can still do that. Anyhoo, I just wanted to thank you for your updates and humor on what to expect. I wish you a speedy recovery to get back to “normal”.
+1
June 24, 2011 at 2:51 pm
did you not have any problems at all after you were reconnected? or did it just eventually get better and now you’re a normal pooper?!
June 29, 2011 at 7:01 pm
Jackie,
More power to you–hope you’re doing well after your latest procedure. I’m one of the “lucky” ones for whom doctors can’t, literally, make a diagnosis–one thing makes them think Crohn’s, another UC, and back and forth we go–AND I have no genetic factors, just a history of lots of Advil and antibiotics for acne when I was a teen. Awesome, apparently I melted my own colon. Anyway, my ostomy and I (“Pinkerton,” or “Pinky” for short) have bonded, but I’m headed for some kind of reconstruction, j-pouch or not, hopefully in the next month or two. I think the neighbors are tired of hearing me yell, “Pinky!!! Why NOW?!” when I’m attempting to shower. I hope you keep us posted on how things are; if you ever write a book, I’m an editor–I volunteer my services! 😉
September 23, 2011 at 12:09 pm
Hi! I too am from Michigan. I am 26 and was told in June of 09 I have UC but suffered from it since I was 10. It sucks! It’s a pain in the ass so to speak. And sometimes the doctors are just as much of a pain as the disease. I wish they all would say the same thing instead of saying “that doctor is stupid”. I feel your pain. But I do not have MS instead I deal with period problems that make my UC worse. And only an OB believes me on that. I take care of my two kids and often feel like crap. It’s nice in a since we are not alone and more and more people are coming out and saying they too have problems. I don’t feel so alone but I have to tell you my good days are few and far between. I wish you the best of luck with everything. Feel better and take care of you.
Liz
November 18, 2011 at 8:24 pm
Wow, I am shocked by the number of fellow patients here with both MS and UC or FAP! Either way, we should start a club to poke fun at “normal people” who wine about having splinters and hang nails.
I had a total collectomy, save 8″, done at 17 because of FAP. Now 20 years later, I need to get a J-pouch because Aspirin and Celebrix no longer keep the polyps at bay. Having adjusted to the leakage, 2-10 bathroom trips per day, not sleeping through the entire night and not having a nice summer salad without paying the price, I am wondering to what degree I will experience the trials again with the J-pouch surgery and the remaining 8″ being taken? I am also curious to what degree the MS-related constipation has impacted the J-pouch function?
Cheers, Eric.
December 28, 2011 at 6:00 am
Jackie,
You’re humor is refreshing! As a 25 yr old woman with an annoying little friend my husband refers to as “Dirty Deborah”, I find your blog incredibly real and relatable. I’ve had my stoma pal going on six months thanks to an “everything that could go wrong, did go wrong” kinda reversal surgery. I hate to sound cliché, but my situation has given me the ability to appreciate my life and show me who in my life is worth my time.
Emily DIckinson
Success is counted sweetest
By those who ne’er succeed.
To comprehend a nectar
Requires sorest need.
Not one of all the purple host
Who took the flag to-day
Can tell the definition,
So clear, of victory!
As he, defeated, dying,
On whose forbidden ear
The distant strains of triumph
Burst agonized and clear!
–Michele
January 1, 2012 at 7:56 pm
Hi Michele! Thanks so much for your comments. I’m pretty sure that I live in a constant state of “everything that could go wrong does” so I totally understand. The best advice I can give is find a support system of other people in your situation. I know more people now with butt diseases than I do without….like honestly. There are tons of us out there…just have to look! Also check out the YODAA page on Facebook. It’s a great group of people there who are awesome. This comment makes me sound all proper and peppy so I’ll throw a fuck in there for good measure.
January 22, 2012 at 10:39 pm
Hi Jackie
Have you ran across any one else having problems with Asacol?. I was diagnosed with UC in April 2010 where my only symptom was light rectal bleeding. Was prescribed Asacol, which seemed to increase sypmtoms and 1 month later was having my colon removed which they discovered was basically dead and falling apart. It took almost 6 month before I felt like myself again. In March 2011 I had my J pouch surgery and 8 weeks later the takedown surgery. So far I feel pretty lucky that the pouch has given me few problems. It’s always nice to read about other people who have been thru the same ordeal as myself, cause no one else really understands.
Thanks.
January 26, 2012 at 7:46 pm
When I first started at Dr. Remzi’s office, I was told of one other patient having an Asacol related pericarditis, but other than that, nope. All doctors and patients seem to think that its safe and problem free, but as I have learned a few times the hard way, no drugs are 100% safe. It took Asacol for me to think twice about what I was being prescibed and to read the fine print. Asacol has never been clinically proven to have caused my problems but its sort of the general consensus. I haven’t heard of any one having your symptoms from Asacol, but its also common for people to start one of the 5-ASAs right when they are diagnosed and then their disease takes a dive for the worst. That is sorta what happened with me. Could be Asacol, could just be the natural progression of your disease. Who knows, all that matters now is your colon free and healthy. Keep on truckin’.
March 3, 2012 at 9:25 pm
Your story is amazing and I am glad you are here to share it with those who are also going through this. I found your picture on Google and it directed me here. I am so glad you are okay!
Best wishes to you now and in the future!
Sophia
March 3, 2012 at 9:29 pm
Sorry, instead of amazing I should have said, heart touching. Best of luck to you in the future!
Sophia
November 14, 2013 at 11:56 pm
Very good looking and cute!
December 14, 2016 at 7:15 pm
I have had a colostomy since September six years ago. it has been hideous.I ido not have a stoma.it has changed every aspect of my life. I have only five inches of colon left.many blowouts it is terrible. I am not close to being the together and fun grandma I once was. I was so piissed off when I woke up. from surgery.ljust wanted to die . I try to count my blessings but it is so vrs
very hard. my husband has been supportive. are there others like me out there? isolating themselves because of fear they will. smell bad?