UC to J-Pouch Story

About Us

Life Goes On!

About the Photo Journal of

Mark and Megan:

Well, if you are reading this then you either know us personally, or you are seriously thinking about the surgery for yourself or a loved one.  I tell my story in these photos, the comments were all documented by Megan (my partner) during the time because we wanted to capture what was happening and what we were feeling at that moment.  Our goal initally was to provide a way for friends and family to know what I was/we were going through.  But also, before I made the surgery decision and headed into surgery, there were no pictures for me to see of the process and real life people going through it.  I wanted to provide a way to show others and their loved ones what the process somewhat goes and looks like.   Now, keep in mind all j-pouch related surgeries go differently depending on doctors, your health, etc…So this is only 1 story of the journey, my story, and the story of my family, my recovery.  Documenting this process was one of the most rewarding things we’ve done! We recommend for anyone to document their story, you’ll find the rewards of helping others with your story help you and your family heal.   Also, the photo to the right is Megan and I in Mexico in May 2008, I’m there with my 6 month old J-pouch and life is good, very good! 

 

ABOUT WHY MARK HAD THIS SURGERY AND UC INFO:

In simple words, Mark’s disease, Ulcerative Colitis (moderate to severe panulcerative colitis) made him have chronic diarrhea, bleeding, and urgency.  His panulcerative colitis means that the entire colon and rectum are inflammed, some people have only parts of their colon inflammed. The related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.

Mark having to have the surgery is more extreme, a lot of people have UC for a lifetime and monitor/control it with medical intervention. The following NY TIMES jpouch story does a good job explaining that only 20-40% of UC patients need the surgery (% explained here UCSF Site), so if you have just been diagnosed it is important to understand you may be in the 60-80% who WILL NOT need surgery.  A common question and one we asked is how did you know when to have surgery especially “For those not forced into surgery” and When did you know time for surgery. There are many posts out there like this one Jpouch vs Ileostomy and these help you feel not so alone in this journey.Stories of surgery decision making.

1) STEP ONE PHOTO SET IS THE REMOVAL OF THE COLON, TEMPORARY ILEOSTOMY.                         

Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedown’ is 2nd surgery).   Step 1 was done in early July 2007 and he was in the hospital for 5 days .  Thankfully, he experienced no complications from this major surgery.   Step 2 surgery will happen after step 1 recovery.   See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal

 2) LIVING WITH A TEMPORARY ILEOSTOMY

Mark had Ulcerative Colitis (pancolitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to committ to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Living with Ileostomy to see the rest of the recovery and life with a bag..     

 

3) “TAKEDOWN SURGERY” – TIME TO LIVE WITH THE J POUCH:

Here is the link to the surgery series for “takedown” surgery. This is the 2nd surgery for Mark where they j pouch has had 3 months inside to heal while he lived with a tempoary ileostomy.  The Ileostomy is removed here and his j pouch becomes his waste removal method: Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.     

4)  The photo journal has been posted on Mark’s Flickr Photo Journal since July 2007.  The Flickr photo journal has had over 7,000 views.  It has been used by nursing students for ostomy presentations, been used by parents to talk with their children about their upcoming surgery, and we’ve had many great comments from others about helpful to see someone else in their situation.   We hope to move exclusively to use of this blog, but our old blog is still up for users familiar with that source. 

 

 

Who are the Bloggers on UC to JPOUCH STORY?

5)  Mark H. is the muse to this project, without Mark none of this would exist!  Mark is a building contractor, and he has been in the construction industry for nearly 15 years.  Mark is now 33, surgery at 31 years old.  Mark is a west coast kid, raised in California and now living in Oregon while Megan finishes her doctorate degree.  In December 2008 we will be moving to Georgia.

Megan L. is Mark’s main squeeze, I’m his partner of 14 years, and I’m 31 years old. A west coast kid, from Arizona and now living in Oregon.  I’m working on a doctorate degree and soon to be finished in 2008 – how exciting as I’ve been in school forever .  I will be an Assistant Professor soon in Georgia doing research and teaching on Housing Issues for the Aging Population and families living with chronic disease.  Mark and I have a dog, no kids…yet….we’d like to now that he is healthy and I’m finishing up my degree. 

 5a)  Carter S. has joined us as a guest blogger, and he has shared his photos and story on his page:  Carter’s Surgery Journey.  

5a) See on the top right hand corner there are other new bloggers including Stephanie, Casey, Gil, Jenelle, Rob. 

5b) We hope to continue having other guest bloggers and new stories of surgery journey’s!

 

6)  CONTACT US

For our ReadersWe’d love to have your feedback, please feel free to post comments.  Let us know if the information was useful for you, did you find the information you were looking for?  We are always looking to improve the usefulness of the blog!  

Send your Link to be Blogrolled:  Just send us a comment here, and we’ll add your IBD, jpouch, colon related link to “Your Stories & Blogs” links.  The more voices we have the better the awareness and advocacy! 

For Advertisers:  If you are interested in talking with us about sponsoring our website through advertising, please contact us at mdhilton@gmail.com

Three Cheers to Good Health,

Mark & Megan

Photo by: podcast and

© 2008 All Rights Reserved
 

 

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45 Responses to “About Us”

  1. Mary Ellen Santoro said

    Mark & Megan

    I have read about you on the J Pouch site. I think documenting your surgery was a wonderful idea. I was diagnosed with ulcerative colitis in 2005. This disease is very frightening – and the thought of surgery in the future was even more!!

    I love seeing people who have had the surgery and are out living their lives. I have read so much about it – and hope should I have to make the decision that I will be at peace with it.

    Thank you for sharing your story.

    Mary Ellen Santoro

  2. mdhilton said

    Hi Mary Ellen,

    Yes, UC is a very frigtening disease with a unique personality. The good thing is that you are educating yourself and facing it head on instead of with blinders on (like we did for many years). If it ever comes time for surgery for you, just get all the information you can – frequent the http://www.jpouch.org online support and info site (our life-line). And make sure you have your family and friends fully prepared and aware of the situation!

    Life without UC is so wonderful, there are options, so just keep trying till you find your solution!
    Mark and Megan

  3. Megan said

    Reason #3 to consider blogging your story below. We are really tryingn to share with others the benefits we have an others have received from sharing their story, our best healing has been through sharing the story:

    “Mark,

    I’m stunned, and humbled. I don’t know what to say…I have had my j-
    pouch for 13 years and I have read everything I could find. I’ve
    joined several online groups and talked to many, many people. Your
    blog is probably the best piece of real-life honest work I’ve seen.
    Congratulations on your amazing attitude, your bravery, your
    willingness to share and your compassion. I know this will help so
    many people. While some of it is indeed scary and in places a bit
    unsavory, it is real and honest and humbling. You are a unique man
    with a big heart. I applaud your entire family for this wonderful
    piece of technology and love. Thank you so much.

    Peace,
    Karen”

    Posted on the Yahoo Jpouch Group Forum: http://health.groups.yahoo.com/group/jpouchsupport/message/21130

    “What you do for yourself – any gesture of kindness, any gesture of gentleness, any gesture of honesty and clear seeing toward yourself – will affect how you expeirence your world. In fact, it will transform how you experience the world. What you do for yourself, you’re doing for others, and what you do for others, you’re doing for yourself.” (Pema Chodron)

  4. mdhilton said

    In March 2008 a 19 year old male, Adam, posted some questions on jpouch.org, we responded to his question and it was what Adam responded with that made us realize that telling your story can really help others:

    “Megan– you have no idea how much I appreciate you replying first..
    I would check out all your photos and information if I already havn’t
    done so atleast 10 times already. Out of the hundreds of doctors and
    nurses and information they give out to you, all of the posts on this
    forum, and all websites I could ever find…your photos and information
    helped me out and eased my mind the most!

    I sat in the hotel room before my my first surgery and went through
    all of it over and over again..I said yes to my prom date and eased
    the minds of my parents by showing the pictures and information to
    them and the quick progess Mark made. I know many people have
    benefited from your Flickr and it inspired me to do my own. I have
    documented up to this point and after my 2nd step I plan on
    setting one up hoping it will help someone the way yours helped me.
    Thank you!”

    We were able to give Adam the very thing that we had wanted while trying to decide on surgery and then going into surgery. Sharing our story has helped us so much, but in turn, helped others as well.

  5. Paul said

    Hi Mark and Megan,

    Just found your site and was really impressed by it and by you both. I was diagnosed with UC 4 years ago now and since then have spent most of it on medication, namely prednisone. Now though I am trying the nutrition route and was having great success until a bout of food poisining knocked me back. I’ve been struggling to get things under contorl since then and was wondering what alternative therapies Mark tried before going down the surgery route as like you I’m not sure I could go down that road unless I was sure there were no other options available to me.

    All the best,

    Paul

  6. mark said

    Hi Paul,

    Sorry to hear you’ve been so sick and doing the prednisone routine. Did you already read this post that we did about Alternative Medicine and what I tried. I preety much tried everything and some seem to maintain some symptoms, like aloe and fish oil seemed to work a little like pred. so when I was off pred and I would go on those. You can use this link or go up to recent posts and click on the “Alternative Meds for UC” link.

    https://ucstory.wordpress.com/2008/06/25/alternative-medicine-for-uc/

    Obviously, I would encourage people to do whatever they must to know for themselves that surgery is right. The only thing I would say is that I lost a lot weight trying natural stuff and it was rather expensive. So, be very methodical about what you try and set deadlines for yourself for how long you’ll let things go, what you’ll try. And you should probably go to a naturopath that knows IBD. And if nutrion was working for you then maybe do a nutrionist that knows the disease.

    Stay in touch and let us know when you get into REMISSION 🙂
    Mark

  7. Colette said

    Hi Mark and Megan,

    I just came across your website by accident. I am always looking for new information for my husband who is 35 and has suffered from UC for 15 years. What I like about your site is that you both post. I can relate to Megan who is the care taker.

    I find comfort in your website, and thank you for your posts.

    My husband was faced with a big decision this summer of getting a J-pouch or remicade. He picked Remicade, but I often wonder if it’s just prolonging the inevitable.

    Wishing you well

    Colette

  8. Megan said

    Hi Colette,

    That is a long time to live with UC – 15 years. Mark only had it for 7 years and that was a lifetime it seemed (or atleast our 20s!) I found that the disease was so pervasive that at some point it became our families disease versus Mark’s disease – it can just be so agressive and dominating about what we could do and how we could live, you know?

    I’ve heard that some folks have good response to Remicade – others like Mark had “burn out” which even though he tried Remicade and then subsequently tried Humira (a sister drug of Remicade) they didn’t work b/c his colon was done or “burnt out” as the drs. called it.

    We’ll send out hoping vibes the remicade works for him! And if it doesn’t, be sure to know that although making the surgery decision is no easy thing, Mark is living healthy for the first time in many years, and our life is about as normal as normal comes now!

    Megan

  9. Chris said

    Mark and Megan,
    My wife has suffered from UC for eight years. She’s recently started yet another flare-up, and I’ve been doing more research about options. That’s how I found your blog. It’s AWESOME! Especially the detailed story of the J-Pouch surgery. We considered it late last year, but then her UC seemed to chill-out.

    Thanks so much for everything you’ve posted; it’s really been helpful. As the spouse of a UC sufferer, it’s so important to understand how we can help the ones we love.

    Glad the J-Pouch has worked for you, Mark. Congratulations on your “new life”!

    Chris

  10. Megan said

    Hi Chris,

    8 years sounds familiar – Mark was at 7 yrs when he had the surgery. I’m sorry to hear about this flare, you both must be exhausted fighting UC. I know how tired we were with the routine of being UC sick in our household. It was always so lonely feeling, especially when the outside world really doesn’t understand the persistence of a chronic disease like UC.

    Well, we can tell you that if you guys decide on surgery, although the decision is the hardest part, you’ll find great resources to help. If you haven’t yet you both should listen to the following webcast, it is a great great great resource for helping to understand the UC to surgery process.

    You should DEFINATELY listen to the webcast that is in the following link. This is from a surgeon talking about your very question “How to make the decision” – this should really illuminate the issues for you.

    https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    And to you Chris, be sure to ALWAYS take care of yourself, stay healthy yourself (emotionally especially) so you have the stregth to help her when needed. She though needs to pick you up when you need as well. How long have you two been together? Do you have kids?

    Megan

  11. Jenelle said

    I’m so pleased to have come across your blog. I am recovering from my first surgery (was on May 23rd, but my bowel had perforated and I had severe, life-threatening complications). Looks like I will have to wait until the winter for the j-pouch. Oddly enough, I found it by trying to find out the weight of the large intestine (figuring I should really only gain back the weight I lost minus the weight of the large intestine).

    I’m a 27-year-old Ph.D. student and I am still muddling through this experience as best I can with the help of my partner (he’s been wonderful). The decision to have the surgery was basically made for me – I was losing so much blood that I was receiving blood transfusions just to keep my hemoglobin at an acceptable level. I had been hospitalized for 3 weeks prior to the surgery. Prednisone had stopped working and Remicade did nothing for me. Surgery was the only way I would get to leave the hospital.

    I think it’s interesting that you mention having a female perspective. I think that it would be advantageous, as there are some unique issues, I believe, particularly around body image. I went from a healthy 135lbs at the beginning of my last flare-up to a scary 93lbs by the time I left the hospital (I was in for 2 months). I’ve gained back a lot, although not all, of the weight. I’m still trying to adjust to my new body, based on the weight changes, the ileostomy, the severe scarring and the continual loss of my hair. My impression is that it is harder to conceal the bag if you are young, thin female. A lot of clothes are fitted and pants are usually low-rise. Skirts and dresses have been good options, but the cold Canadian winter will make them impractical.

    When I first started to feel well enough to think about “normal” activities, I was disappointed to find the lack of information about sex and ileostomies. Even once you work out how to conceal things in public, the issue of becoming comfortable in private still remains. I’m lucky to have such a supportive partner and so we’ve figured out what I feel comfortable with, but it was a very difficult aspect for me. I’m happy to see you touched on the physical capabilities of sex after the surgery, but I do think that the issue is likely to be more complex for some people.

    Thanks for being so open & honest about your experiences!

    Jenelle

  12. Megan said

    Hi Jenelle,

    I can’t imagine how coping with the surgery when it was made for you would be. We often talked about whether it is harder to make the decision for yourself or have it medically decided in an emergency.

    Thanks for sharing your female perspective. And yes body image is really complex with both the disease and surgery. I have found that both men and women struggle with the body image but that women have more societal standards for “beauty” which adds to the complexity. There was a study done years ago that indciated that women in wheelchairs were no longer perceived as sexual beings, whereas, men in wheelchairs were still perceived as sexual beings. I would think those findings translate to the pressure women feel living with ostomies and such.

    Maybe at some point you’d be willing to share a post or two on our blog about your concerns with intimacy, and/or your concerns with fertility. I know women have more fertility issues than men with the surgery and I’d love to talk about that on the blog.

    Take care and good luck on the ph.d pursuit. I am 50 days from defending my dissertation so I understand the path you are travelling. Its a crazy path 🙂

    Megan

  13. Jenelle said

    Hi Megan,

    I’d be happy to do a couple of posts. Just let me know how.

    Good luck with the defense!

    Jenelle

  14. Megan said

    Jenelle,

    We’ll chat more, why don’t you send a private email to our mdhilton@gmail.com account.

    Megan

  15. ucvlog said

    Hey Mark,

    Interesting story. I had ulcerative colitis myself and just recently underwent j-pouch surgery. Three months from now the takedown. I’m surprised you went 7 years battling your pancolitis. I also had pancolitis but only made it a year before surgery…exhausted my options pretty quickly.

    But things are looking up and I’m now starting a site to document my experiences. Check it out at UCVlog.com. Basically the same thing that you’re doing here but through video. Take care and good luck!

    Dennis.

  16. mark said

    Dennis,

    Hope you are feeling better these days. Everyone has such a different process deciding on surgery when it isn’t emergency case scenario like Jenelle. I had been told at year 3-4 that I should have surgery, but I had to do other things before I knew 100% all my options were exhausted. I think that it is really important to acknowledge that the medicine routine and process for surgery varies so dramatically person to person.

    What I do know is that I have zero regrets with my decision now because I waited till I was 100% sure it was right for me.

    Stay well and keep up the great vlog. We’ll add you to our bloglist – please feel free to share our site on your bloglist.

    Mark

  17. Jefff said

    Hello:
    Thank you so much for your website. I have been looking all over for more information and help and your site has been one of the most helpful by conveying “real” experience instead of dry numbers and facts from hospitals. I’ve had UC for 17 years…been through just about every medication on the board, had 2nd opinion and stuff at Mayo and was then faced with 1) surgery or 2) remicade. I chose remicade and got now relief whatsoever. After a lot of research, including your site, I am resolved to do the surgery and I am very happy with this decision. The only decisions left to make are where and “who”. I can do the surgery with the director of colrectal surgery at a major medical institution (and very respected) close by my home (45 min). Or I can go to Mayo which is almost 7 hrs away. Mayo would seem to offer the overwhelming volume “experience” but my concern would be follow up care if anything went wrong. Any thoughts here?

  18. mark said

    Jeff,

    Wow…17 years is a long time with UC.I’m sorry to hear Remicade didn’t work, it didn’t work for me either but worth trying b/c for some people it is like a magic cure.

    Well, your decision is well asked. I did my surgery 8 hours from where I was living at the time and that worked out fine for me. Follow up care, etc..wasn’t hard to get I just had to plan my trips and such and my doctors were willing to work with me over the phone and email for minor things. I was lucky though and didn’t have complications like some people do. So, I didn’t have to deal with being re-hosipitalized, etc. And if that had happened it would have been more difficult to receive follow up care.

    I think what you should weigh is which facility and surgeon can you get the BEST J-POUCH surgery done. This is the type of surgery where the craft of surgeon is huge in your having faster recovery, less complications, etc…

    Some of the questions would be: Do both surgeons do lapro? How many steps do you have to have according to each surgeon? How many J-pouch surgeries has each surgeon done?

    Have you posted on http://www.jpouch.org seeing if anyone there knows your possible surgeons and their opinions?

    Keep us posted!
    Mark

  19. Jefff said

    Mark,
    thanks for the response……I’ve gotten more feedback from others etc. and thanks to some “friends” of “friends” etc. (some of whom are doctors themselves) I’ve made the decision to go with a doctor about an hour or so from here who is very good

    several doctors who know him and others flat out said that if they or anyone in their family had to have this done, then he is the one they would go to…..that meant a lot to me

    after meeting with him and reviewing his experience with lapro, the # of surgeries he’s done, etc. I am very comfortable with him

    the date has been set for nov 11th….3 weeks away but seems like forever to wait now that I’ve made the decision…but I’m sure time will pass before I know it

    how many days after surgery did you feel well enough to “do” things….ie. run errands, take care of things etc….not necessarily heavy lifting, working out etc. but just doing normal day to day activities without getting overly tired in 30 min or so?

    The reason I ask is that extended family wants to do something for thanksgiving, but would involve travel and it would be 16-18 days after surgery. Of course, only time will tell, but I’m wondering if there is even any chance of it.

    Final question (for now at least)….what do you recommend in 3 weeks prior to surgery to maximize recovery etc?

    THANKS!!!!

    –Jeff

  20. mark said

    Hey Jeff,

    Wow, the big decision has been made – the hardest part is that decision, well, it was for me anyway. I’m sure you have but try to read the detailed text that Megs wrote about my recover from surgery one in the two photo sets Colectomy and Ileostomy for dates b/c that gives specifics and now I only remember generalities.

    https://ucstory.wordpress.com/surgery-1/

    https://ucstory.wordpress.com/surgery-2-inbetween-surgeries/

    But I would say you should be doing okay by Thanksgiving, pending no complications, you’ll definately be eating and up and mobile. The only two things for me about 3 weeks out was, I was still standing a little hunched over (I couldn’t stand fully straight for about 4-5 wks). But at three weeks they had a party for me and I it was a great night, I ate, laughed, showed off my stoma.

    The best things to maximize recovery were cross your fingers for no complications, have excellent support around you, accept the decision and don’t fight the stoma or the reality of the siutation. This is in your mind how well you can recovery. And the other things are the following info from the colectomy photos:

    Also, before the surgery his GI gave him two pieces of advice: (1) Get high cardio before surgery you need to be in good shape and have a strong heart to recovery faster – so every day no matter how exhausted he was after work he would come home and skateboard for atleast an hour to get in cardio. It was almost spooky how driven he was to do the cardio although he was sick and tired. (2) High protein diet. Protein helps the tissue in our body generate so it helps with healing. And yes, we did protein shakes for him and then made sure our diet was high protein.**

    Keep up posted, and do find the wealth of knowledge available at http://www.jpouch.org.

    Take care,
    Mark

  21. PaperGirl said

    Dear Mark and Megan:

    You guys are a godsend. Thank you for this site. I’m in the hospital now and looking at surgery as soon as this week. I’m scared and I’m confused. I don’t know what I’d do without my laptop and all the content and encouragement here.

    I’m a long-time blogger and this experience is being fully covered on PaperGirl, http://www.maryfons.com/cblog

    Thanks a Million,
    Mary

  22. Jessica said

    Wow,

    I’ll admit I cried a little bit as I read through your postings. I had a colonectomy in February 2008 and wish very much I had found this site before then (as a photographic hobbyist, I wanted my camera while in the hospital, but everyone discouraged me from recording my path as ‘depressing’).

    Reading comments, I am astonished that anyone could live years with this disease. For me it was sudden and severe, I was diagnosed in March 2007 and had exhausted all my options by December 2007. My doctors were surprised my colon hadn’t perforated when they took it out in February.

    My plan with my surgeon is to do the reconnection next summer right as school ends (I am a teacher) and the take down right before school starts again. I was angsting over doing the j-pouch or forever staying with my ‘bob’ (big ole bag) and saw a comment by a poster in a livejournal community who shared this link with me.

    Learning about 2 people who seem to have successful j-pouches is a comfort to me, since what I usually find in spport groups are people who well, need the support.

    Thank you!

  23. Megan said

    Hi Jessica,

    Glad you are living well with “bob” and how exciting to have the option for a jpouch. I think it is a common question to wonder if one should just stay problem free with the ostomy or try for the jpouch. On http://www.jpouch.org forum boards this question is asked a lot and it seems most people give the same advice that is you can try for the jpouch and if it works out you’ll live pretty much “normal” again, and if it doesn’t work then it is back to the bag. And the statistic I’ve heard (not sure of source) is that 90% of jpouch are successful.

    There are many good outcomes that you can find on places like jpouch.org, below is a link to long term jpouchers and “calling all good reports”

    https://ucstory.wordpress.com/2008/10/03/long-term-j-pouchers/

    Also, it is still not too late to photograph and document your story. I’m sure others thought our documentation of Mark’s story was a bit much, but we knew it was something we needed to do.

    Take care,
    Megan

  24. Suzanne said

    Hi Mark & Megan

    I am the wife/caregiver of husband who suffered since 1985 with UC. We’ve been married 24 years – 23 with ulcerative colitis. He has had several gastro docs,various meds and hospitalizations through the years. About 10 years ago we went to the city (Philadelphia) to top docs. When they suggested surgery 10 years ago we didn’t do it. But then things got worse, then better, then worse. Always a roller coaster ride it seems. Last year he tried Remicade and it worked great. He was awesome last summer and feeling on top of the world. Then just after the holidays last year he got “uc sick” again and nothing helped. We were always waiting on the next dr appointment or the next remicade treatment. Then in April he started bleeding really bad and constant. He started losing serious weight and was constantly dehydrated. He lost 40 pounds and looked like death. It was awful. By June he was near deaths door until our doc looked us both in the eye and said “surgery” is the only answer. Within one week he had the first of 3 surgeries. They could not do the combined 1 and 2 because his blood count was so low – he required 6 transfusions. Talk about scary. He was in the ICU for 5 days and then hospital for another 5. I searched every possible website searching for answers to everything that was going on. I found your website through jpouch.org. I have been reading your blog every since. I am responding today because we are in the “middle of the road” portion of this journey. He had his 2nd surgery in late September and we are awaiting the date for his January “take down”. We have had so many ups and downs, I’m not sure what way we are facing today. I am amazed at how one day can be really good and the next unbelievably bad. I have been the supportive wife through the whole thing, but I’m starting to lose my patience now. I’m just plain tired of all of this and just want it to end. I know this is not a good attitude, but I really can’t talk to anyone about how I feel, because mostly no one can relate and/or have their own problems. After reading Megan’s comments today in one of your posts, I was overcome with joy that she pinpointed exactly how I am feeling. I feel so selfish, but at the same time, this is a together disease and I feel like I have it too. Everytime I try to open up and say what I am feeling, my husband always says “well imagine how I feel”. Were the two of you ever in that spot? How do you get past it? What do you do when it all seems to overwhelming? I need a break, but don’t know how to go about getting it. He is home right now and counts the minutes till I get home from work. He calls me all day long at work. He relies on me 120% for everything. Last weekend, we spent every waking (and sleeping) moment together. I love him dearly, but how do I get my feelings across without hurting his? I guess I just need a little pep talk from another married couple going through the very same thing. You two are the only ones I know. – even if its through a blog. Any encouraging words for the supportive but tired and overwhelmed wife? Thanks in advance.

    Suzanne from NJ – Nov. 2008

  25. Megan said

    Hi Suzanne,

    Well, I hear you and I bet there are many partners out there who hear you! I think first I’d recommend you also share your concerns on http://www.jpouch.org as a “wife” and see if others don’t have supportive words. But as for Mark and I, we have experienced many times of therapy either together and at times separately b/c we would have different phases of “coping” with what he was or we were going through. But to be honest with you, there were many years (about 4 years) where the disease was ALL ABOUT MARK – and Mark really only thought about Mark and didn’t grasp how it could be affecting me. Sounds a lot like what your husband will say as “well imagine how I feel” – but Mark learned I had a breaking point, and this point was me literally breaking emotionally and he had to for the first time step up and help me get better, it was no longer about only him. And after that phase in our life (a really hard phase) we became a team and have never gone back to a mind set of his disease, after that it was our disease and we were in it together – he took care of me and I took care of him.

    I think the main thing is that somehow your husband needs to understand in a gentleness that his being sick is affecting and hard on you, but there is a fine balance that he needs to know it isn’t a negative thing, but that if he works with you, the two of you can cope with this much easier since it ins’t about him.

    I think you might want to show him our blog, show him our conversation here, and let him know that part of the whole reason I wanted to make this blog was to also show how involved family members are involved and affected, but also how much they can be supported, but also, how much support the family needs too.

    The most important thing is that you MUST put you first no matter b/c if you aren’t stable/healthy then you guys have double the trouble (so to speak). Also, if he learns you are putting you first, he may learn or see how integral your well-being is?!

    Stay in touch and if ever needed feel free to private message us at mdhilton@gmail.com

    Megan

  26. juan said

    Hi, your blog is very helpfull, I had UC, the surgeons had to remove my entire colon and part of my rectun ’cause the medications didn’t work,now we are talking about the j-pouch surgery but i start developing abcsess around the anus,i had fever for about two days or more so i had to go to the ER, i had a surgery to drain the abcess i was on antibiotics too, now my doctor told me i have a fistula, i had a surgery today again ’cause a new abcsess formed in the same place so they had to empty it again, they put me something in the place where they made the cut to close from inside out, now my doctor told me i can’t have a j-pouch because of the abcsess,he thinks i have cronh’s disease but the absess formed from the rectum and not from the anus, i think the absess formed cause i still have UC in my rectum, this can be posible in UC? I’m not taking any medication for this part of my rectum, i’m confuse,the surgeons told me that UC doesn’t develop abcsess around the anus.,and it can be cronh’s disease,i still want the j-pouch, please i would like somebody help me.

  27. mark said

    Hi Juan,

    So sorry to hear about the difficulties you are having – just as you think you are getting healthy you form the abscess and fistula which I’ve heard can be painful.

    I do not really know much about getting what the abscess means and if it means chrons or what. But I can tell you that you should DEFINATELY, write the same thing you wrote here on the forum board at http://www.jpouch.org there you’ll find many others who will know your situation and be better able to help you.

    I love http://www.jpouch.org and you’ll find the people on the forum board are excellent support and information!

    Mark

  28. carter99 said

    Hey guys,

    Just wanted to say “Hello.” I havent posted in a while and I realize it’s about time for an update. This semester has been tough and I havent had a whole lot of time. But it’s almost over with and I will start working on an update on my progress. I hope you guys are doing well out on the west coast. Happy Thanksgiving.

    Carter

  29. Stephanie P. said

    Hi Mark, Megan and and all UC/Crohn’s sufferers,

    My name is Stephanie and I am 19 years old. I have been struggling with UC/Crohn’s for the last 3 years. I have been in and out of the hospital non stop and on October 2008, after much suffering and consideration, I decided to have my entire colon removed. I was told it was going to be two surgeries but unfortunately I had some complications and the surgeon was not able to create the j pouch. The procedure is now a three step procedure. I have been waiting since then with a TEMPORARY ILEOSTOMY. I was so scared because they did not know how long i had to stay with it. As a girl it was very difficult and i have suffered with major depression. I have an amazing boyfriend who is extremely supportive. Honestly if it was not for him nor my family, i would not be here. I am not going to go into details on how sick i was because you know, from first hand experience.

    This Christmas I received an amazing miracle, i went to my surgeon (who may i add is amazing) and he said in january we are going to attempt again to make the J pouch. Hopefully by the ending of march I will join you living with a J pouch. With me though i have to cross my fingers because there is a possibility I have crohn’s disease and therefore I’m always at risk for a flare up for the rest of my intestines.

    I was reading some of the blogs and something caught my attention, the intimacy topic. When I decided to have surgery my boyfriend was very supportive and pushed me all the way. He said he could not bare to see me in pain anymore, running to the bathroom 25 times a day and constantly tired and pale. The last thing on both of our minds was intimacy. I was scared on how the ileostomy would look and effect my social life. But i had no choice i could barely walk to the bathroom from the dehydration. My doctors told me i didn’t have an option, the colon had to go. I was basically forced to have it removed. When i woke up for surgery I asked my mom to show me a picture of my stoma. Both my parents decided that wasn’t a good idea not did they tell me i was so swollen the j pouch was not able to be formed. My boyfriend being the honest one who could never lie to me took a picture of my stoma and showed it to me. That was the first time i had seen a stoma because i didn’t want to see a picture on the internet because i knew myself and i wouldn’t have gone through with the surgery. Prior to this I am not going to lie, I know i was a very shallow person. I was one of the plastic high school girls who everyone pretended to love but hated as you got older. Yeah that was me. I believe i was given an ileostomy to teach me a lesson and boy did it. I honestly have a new prospective on life.

    Well anyways, I am trailing off the subject. My boyfriend was convinced we were not going to be intimate because he was so scared to hurt me. Honestly, that did not last 4 weeks. When my stitches started to dissolve and I was feeling better I started to tease him. He said no way. He held his ground. Again that didn’t last, not even a minute. Yes he was petrified about hurting me, ( i had just had an organ removed and a gut pulled out of me less that four and a half weeks before) but we were careful on not putting weight anywhere near my stomach. Yes my sex drive was completely shot but i thought I would force myself as a reward towards him (never telling him that part of course) and being so great. But as soon as we went back to normal my drive can back naturally. I don’t think i would have had the self confidence is he hadn’t sat with me and had a heart to heart talk on our emotional bond and how we could overcome anything. I was still very uncomfortable. I started ordering the mini closed end pouches. They were the size on my wafer and i have adapted to clipping it off the wafer and emptying it out that way. Since they are skin color the output is not seen and it makes me feel a lot better.

    I am going to tell you about an embarrassing situation and how amazing my boyfriend is. One day we were having a spontaneous intimate moment in his brother’s office when we were alone one night (on a white couch). I have very sensitive skin and had been suffering since the beginning with having trouble with the glue sticking on properly. I had just put a fresh bag and apparently the glue didn’t dry right, and since i use the mini bags it fills up quick. I had just eaten, so i was semi full, and between the loose glue and the movement my bag leaked all over Omar. I mean everywhere! And all over the couch. I started to cry hysterical. I was so embarrassed, angry and frustrated. I couldn’t react i didn’t know what to do. I was scared about what omar was thinking even though i know he is understand but at the end of the day he’s human and I was even grossed out. While i stood there, naked, in shock, and full of crap omar started cleaning everything up and even helped clean me. He tapped napkins around my stomach, told me to stop crying and went to the vending machine to by coke and water. he cleaned the couch as much as possible and then spilled coke all over it. He took me home we showered, i put a fresh bag on and went back to the office with soap and cleaning products. We cleaned the white couch as much as possible and he told his brother he spilled coke. Until this day they still have the couch and i avoid it as much as possible. But, it doesn’t freak Omar out. On the contrary, he is super supportive. That put a massive bump on my confidence but he wouldn’t have it. He made sure i was strong and overcame everything.

    I have had my ileostomy now over a year and hopefully that will come off soon but my stoma did not stop me from doing anything. My family and boyfriend was dedicated to finding ways around EVERYTHING for me. I even went scuba diving. I would wear swim suits with my friends and they couldn’t tell. My mom and i went on a mission on shopping for trendy, sexy one pieces. When i would wear the mini bag it was impossible for anyone to see anything!!! To be comfortable i bought maternity jeans for skinny women and would wear those on my swollen days with a cute top and no one would know. At work i just informed them of my situation because i was going to need time off and my boss would not believe me. I had to lift my shirt and show him. He was in shock!!! I showed him the documents from my surgeon and he didn’t know how to respond. If you look at me you cannot tell.

    Even though it was hard to notice, I have major problems with depression. I take medication for it but sometimes it overpowers me. My therapist and psychiatrist think i will overcome it once my ileostomy is removed. I also have to learn how to manage my stress and be less of a control freak ( a work in progress) I cannot stress school, my job and control everything if i do not want a flare up. I will be on medication for the rest of my life. We’ll see what happens….. On January 5th they tell my the date for the creation of the j pouch and then 8 weeks later the takedown. So i have a lot to overcome but i know with my family and omar on my side i can conquer anything. (and god of course)

  30. mark said

    Hi Stephanie,

    Thanks for posting on the blog, you’ve really been through a lot and it sounds like you and those around have really grown from your situation to be more compassionate and gentle individuals. I know Megan always says that her experiences with dealing with all this stuff has made her more aware of others and more kind and patient. And yes, intimacy during UC, and with the surgery changes is a challenge for most people and it does take a strong and understand partner to accept the new changes. We are lucky to have understanding partners.

    Wishing you all the best with your jpouch surgery and recovery. Keep us posted on your recovery!
    Mark

  31. Stephanie P. said

    Mark:
    i wanted to ask you how are you doing now with the j pouch?

  32. […] Mark. And to Megan and Mark.. if you happen upon this link, know I through kudos to you both!)  UC Story w pics Share and […]

  33. Bryan said

    This can happen to anyone! I was diagnoised in November of 2009 and ended up having the first surgery performed on Feb. 8, 2010. I am a professional athelete and did not think this would happen to me. I didnt even know what this disease was before I came down with UC. I have started a Crohns and Colitis Foundation to help out others in my situation called Rise and Conquer. Please take the time to visit my website and read my story! http://www.riseandconquer.org
    If I can help anyone then let me know!

  34. Jennifer said

    Hello Mark & Megan!

    I discovered this site by accident; I’m a nursing student & was doing a quick google search on UC & came across this site & your journey. I just wanted to drop a quick line & thank you for sharing your story with the world! I’ve had a few patients in the hospital undergoing similar procedures who are very scared about the unknown, and I think it is wonderful that you’re willing to share your experience with others. I know others will be able to gain valuable information & encouragement from reading about your experiences! Your optimism & openness is inspiring, and taught me a lot. Thank you again, and all the best!

    Jennifer

  35. Marc-Antoine said

    Hi, I also had this sugery had it also gave me a new better life!

    Have you ever tried medical marijuana? I have heard alot of good about it but I have not asked my doctor about it yet…

  36. chu said

    Dear Mark and Megan
    I road your blog and it can help other people who have same situation with you so I want to used your picture to teach my student and told them about your story. thank you for your story

  37. April Dawn said

    Greetings! This page comes up a lot and I just now read it. Bad April.
    I was diagnosed with UC in 2003. Had my colonectomy in 2009. I was supposed to have the J-Pouch done 6 months later. Unfortunately there some complications and it was postponed. Now it is April, 2012, and I am ready.
    I noticed that you are also in Oregon. I live in Portland and had my surgery at Providence. I was wondering who the surgeon was and the hospital. I am not sure if I want the same surgeon.

  38. Jen said

    Fantastic site. Thankyou thankyou thankyou!! God bless you both xxx

  39. visit the web is a very rewarding experience for me.

  40. Jess Cohan said

    This website is a really great tool for people who are considering surgery as well as their families. Thank you so much for sharing! I am working on a patient education project for ulcerative colitis. I am having a really hard time trying to find good pictures to use. If you have any interest in possibly contributing some pictures to my project (we can alter them in any way you would like), please feel free to email me. Thank you again – this website is a great resource!
    Sincerely,
    Jess

  41. Mark & Megan – I am an instructional designer on the RX-TN Grant (awarded by the US DOL and intended to provide easier access to healthcare career training). We would like to use some of your photos and refer students to your website in a presentation we are developing for Occupational Therapy Assistants. If this sounds like something you might consider allowing us to do, please email me and I will send you the specific photos we are interested in using, a copy of the slides we would eventually publish with the photos, and a more detailed description of the grant.
    thank you so much –
    Miriam Larson
    milarso1@vt.edu

  42. Kuzyk said

    I’m encouraged this site through my personal relative. Now i’m will no longer confident whether or not this particular release can be prepared through him or her as no one else realize like particular pertaining to my personal issues. That you are excellent! Thanks a lot!

  43. I read your blog.. its amazing. you having very good content. very helpful to all.
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  44. Dewayne said

    Thank you for the good writeup. It in fact was a amusement account it.
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  45. […] About Us « UC to J-Pouch Story – May 14, 2008 at 6:20 pm. Mark & Megan. I have read about you on the J Pouch site. I think documenting your surgery was a wonderful idea. I was diagnosed with …… […]

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