We have a long comment from Cynthia C. and she has a handful of really great questions for the jpouch community. Would you take a few minutes to read her post and see her questions at the end.

Thanks so much!

Megan & Mark

# Cynthia C. Cynthia C. says: February 23rd, 2010 at 11:52 am

Hello Everyone, My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time. First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done. I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer! It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP. What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill. Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me. Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay. By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!! My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illeostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life. The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird. Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time. Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back. So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not! I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

2)Advice on clothes!

3)What type of bag works best for you?

4)When can I expect to feel normal, with no more pain from surgery?

5)Did any of you have back pain after surgery? My back is killing me!

6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off. Okay, I’ll leave it at that for now.

Sorry this is so long! Thanks! Best, Cindy

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• November 10, 2009 -- Just Dance! (8)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

Dave Barry's Colonoscopy Certificate

Everyone’s favorite humor columnist, Dave Barry, has a great piece on Colonoscopies that a co-worker recently dug up and sent to Brevin. Too long to reproduce here, there are some highlights that I’m sure we all can relate to (especially in the case of his hospital descriptions). Since I was in the hospital 47,000 times last year, and I work as a web consultant for that hospital — I have to go to meetings there, too, eek — these are my favorite parts:

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the hell the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Check out the full article over at the Miami Herald where you can download and print your very own Dave Barry Colonoscopy Certificate (displayed above),  and happy 4th everyone!

These posts might also help out:

• February 8, 2010 -- A little insight on my insides. (13)
• April 5, 2010 -- Home from Surgery #1 (1)
• February 25, 2010 -- Commenter with Questions (13)
• February 13, 2010 -- Take a walk in my shoes (93)

A fan of the 1970s television series “The Six Million Dollar Man,” Spence said he had an epiphany when looking at his cell phone camera and realizing something that small could fit into his empty eye socket…

The camera he’ll install was originally designed for colonoscopies.

link

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• September 8, 2009 -- Colitis by Numbers: Days Since Module Tracks Flares, Tapers, and more (1)
• July 22, 2009 -- Jpouch Life is on Twitter (0)
• July 3, 2009 -- Dave Barry’s Insight into the Colonoscopy (2)

Pouchoscopy has been added to Wikipedia

Reading Abby’s update from yesterday made me realize: there’s no Wikipedia page for pouchoscopy! This might not seem like a big deal, but when you consider that Wikipedia results are typically in the top 3 on Google for any term-specific search, you can begin to see why it’s important.

Well, luckily it’s a wiki, so I did a little poking around and found a few articles that use the term pouchoscopy, articles from respected medical journals. Hopefully the new Wikipedia entry is approved by the many administrators and users of the great online encyclopedia, and it stays there to help future J-pouchers.

You can read the new article here, and see my edits to the J-pouch entry here (I clarified the three-part surgery, ’cause that’s what I had), and see the last sentence in colonoscopy referencing the pouchoscopy here.

Mark and Megan have done a great job de-mystifying these diseases through their photos and this site. I hope my contribution to Wikipedia adds another level of transparency to these diseases much the same way.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• February 25, 2010 -- Commenter with Questions (13)
• February 13, 2010 -- Take a walk in my shoes (93)

Results are in

I have a kwazillion questions to ask the surgeon candidate. A kwazillion. Scientists maintain that’s a real number when it comes to questions regarding anything related to a scalpel. I’m currently compiling a list, spanning all areas from the ileostomy bag and the recovery process to insurance coverage and surgery experience. Each time I think of something, I add it to this list. If I don’t break the surgeon down into tears from the mass amount of questions on the list, I obviously don’t have enough questions. There are a few questions I won’t ask the surgeon about having a J-Pouch, though. Questions I won’t ask the surgeon:

1 ) Can I tell my friends I’m half android with a J-Pouch? Or is it half cyborg?
2 ) With the J-Pouch, will I still get nauseous from watching CW ads for 090210 and Gossip Girl?
3 ) Is it true I can time-travel with the J-Pouch if I eat enough chili?
4 ) What are we looking at for the percentage gain in Chick Magnetism with a J-Pouch?
5 ) Did you cry at the end of Titanic? The Notebook?
6 ) Since I weigh less (hello, I’m missing a colon), am I better at Pop-Lock dance routines?
7 ) Do J-Pouchers get discounts?
8 ) Are you House?

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)
• January 25, 2009 -- Jessalynn (10)