From Science Now:

All those Lucky Charms and Big Macs that people in the developed world scarf down could explain why they are more susceptible to allergies, autoimmune disorders, and inflammatory bowel disease than residents of agrarian societies. New research suggests that people living in rural Africa have a healthier mix of microbes in their guts than do their Western counterparts, which may protect them from the intestinal diseases that are common in modern developed countries.

These posts might also help out:

• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• June 15, 2009 -- Teen Diagnoses her Crohn’s Disease (1)
• November 4, 2010 -- Fear Monger, MD (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)

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)

Weight: When I had UC, my weight would fluctuate as I had flare ups. When I got out of the first surgery, I was coming in at a 152 pounds. Now, I’m sitting around a 183 pounds and, here is the best part, it no longer fluctuates all over the place. I’m super proud of this achievement. It means my body is stable for the first time in 8 years!!

Poop: I still go more than an average person, but come on, people. Come on. During UC I had constant pains and had to run to the bathroom every hour or so. I now don’t have to rush or anything. It’s all rather casual now. My stool is also more controlled now (you know: solid, smells like flowers, wins awards).

Diet: I have less restrictions now than when I had UC. I started slowly, sampling various foods and transitioning my diet to new food groups. So far, everything is good. I do avoid a few certain styles of food because, well, the results were mixed. Leafy salad, corn, and Mexican food aren’t on my Favorites List, but there hasn’t been a food that totally wrecked me. For those concerned about Mexican food: no, you won’t have to sacrifice the deliciousness. But I do recommend you pace yourself ha.

Fiber: BeneFiber is awesome. I don’t have to take it as often. In fact, I haven’t’ taken it in over a month. Instead, I just take it when I’m going to try a new food or eat something that I know will cause issues (looking right at you, soup).

Meds: Aside from the occasional Pro Biotic (VSL #3) and multi-vitamin, I currently don’t take any medicine. For someone who used to take 12 Asacol tablets a day on top of other fun pills for many many years, this is extremely liberating. Weird, almost. But I feel like I earned this freedom by going through with the surgery.

Exercise: I go the gym 6 days a week. I’m not trying to get buff or win World’s Strongest Man, regardless of what my previous claims might have implied. Instead, I’m just really, really, really excited about being healthy again and am trying to maintain my health by helping my body out.

Scars: Check it out:

Aside from the large scar that I've had since I was a wee baby, you can barely tell.

Team Challenge: I learned about this from fellow j-pouch community member Elise. Team Challenge is having a fund-raiser half-marathon this December in Las Vegas for the CCFA and I’ve been training dangit. When I had UC, I couldn’t run unless it was straight to the bathroom. Now, get this, I can drive to the city, train, come back, and THEN use the bathroom. And when I say “train” I mean pretty long distances. This past weekend was 5 miles walking and 5 miles running. I’ve never run 5 miles in my life, ever. It’s soooo motivating to be surrounded by a team members all gunning for the same cause: finding cures for UC and Crohn’s. And yes, I’ve been raising funds. All of my fund raising goes straight to the cause: YOU. I’m doing this for everyone affected by UC or Crohn’s. I hope to make you all proud! Here is my fundraiser page. Lizz you better donate a grand or I’m sending you “questionable” pictures.

Training for a %$#ing half marathon.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)

Once in the actual appointment, it went pretty fast. To be honest, the only complications I currently have are not related to the J-Pouch at all. The two biggest issues I have right now are my irritated skin (I have super sensitive skin that loves to flare up when I’m within a thousand yards of anything that remotely resembles a seasonal allergy) and one lapro scar that isn’t fully healed. The doc can’t do anything about my skin of course, but she did look at my lapro scar and isn’t too concerned. The wound just needs to heal up, since it seems that it pulled open a little, unlike the other ones. The skin just needs to close up. I currently cover it with a saline-soaked gauze thing, but the doc recommends I use a vitamin A and D topical on it. Just as she said that, she went “Oh wait here’s something better! Try honey!” Apparently you take honey and mix in sugar until it’s the consistency of a paste. Cover the wound in that, cover with gauze, and let it heal. I then added “Sweet! I can then finish off the left-overs!”, at which point we both laughed and high-fived each other. Ok, we didn’t high-five, but she did look at me weird when I mentioned I could eat the left-overs. I just hope I don’t attract bees and … and bears. Or even worse, bees the size of bears.

She then, how can I put this, used her finger to see how my J-Pouch was feeling… from within. As I lay there on my side, wondering why I didn’t have a rape-whistle handy, she said I’m healing up well and seem to be on track for takedown. Not too shabby, methinks. The first week in July I’ll go in for an x-ray and they’ll verify if everything is where it should be, progress-wise. The take-down will then be scheduled the week afterwards, so the rough plan right now is I’m going back for round two in the second week of July!

So yeah, a pretty successful post-op, except for the part where I forgot to ask about my diet. When can I eat sausage again?!
Until then, my stoma and I will continue to solve mysteries each week. This previous week’s adventure is below:

On a side note, a special shout out to Elise, who is about to escape the hospital.

These posts might also help out:

• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• June 10, 2009 -- The First Surgery: One Month Later (9)
• June 6, 2009 -- Let’s just call it … IBD (8)
• July 20, 2011 -- 2 Years Post TakeDown (6)

The Scars:

I’m amazed by how well the laproscopic scars healed up. They look like tiny papercuts. Well, except for one. The largest of the lapro scars (on the left, below the previously existing scar) is still healing and has a long way to go. It might get infected, so to avoid this I have the band-aid on. This particular scar is a jerk when you compare it to the other ones. The large, main scar above the pubic bone is healing up nicely. The small purple spot is where the JP Drain was. Not too shabby, considering they shoved a tube in there. All in all, I welcome the 6 new scars (it will be 7 once the takedown surgery patches up the stoma). I’m still bloated and lost some definition, but I think it’s hilarious that the LoveNox injections I give myself in the love handles (for a tiny blood clot incident) are leaving more marks than a massive surgery. Yay, fear of needles!

1) Lapro: super tiny and disappearing; 2 and 3) Lapro: almost gone; 4) JP-Drain; 5) The Big One; 6) Oh look an intestine sticking out; 7) Lapro: Band-Aid protecting scar

The Stoma:

Do you feel left out for not having an ileostomy? Do you get made fun of for not having a stoma? Well I’m here to help! Simply glue a red Dots candy to your stomach! It’s pretty much the same. Expect my Dots candy likes to poo when startled. And to poo just for fun.

The medical community is telling me that my stoma is fairly tiny. I guess there are varying sizes? It’s between 7/8″ and 1″. The stoma’s opening itself is close to the surface of the skin, so this causes skin irritation close to that area. I haven’t named my stoma yet, although the name Stomie “Squirt” Stoma, P.I. is winning so far. I’m open for suggestions! I do have a character profile in place. Stomie “Squirt” Stoma, P.I. solves mysteries each week with it’s crazy detective and observational skills. Sort of like Murder, She Wrote but with more.. poo. Last week we solved the mystery of the missing Pringles! It turns out I ate all of them.

Left: Eww gross yuck ewww; Right: Yay!

The Ileostomy Bag And J-Pouch:
One month, zero leaks. Yes, I realize the leaks are inevitable and I came close to getting leaks. But I have had no emergency patch jobs yet. To make up for this, my body (who is holding a grudge against me for not enjoying cheese cake during my hospital stay) is sometimes leaking through the bum when I sleep. Apparently when you sleep, your muscles are relaxed and you can have discharge through the J-Pouch. It’s not regular clock-work leakage, and it’s not exactly gallons of fluid, but I play it safe and have a pad thingy available when I go snore away. How common is this for folk with the j-pouch? Will the leakage stop once my bum clenching muscles wake up?

The Home Nurses and Costco:
For some magical reason, my insurance covered all of the surgery and hospital bills but won’t cover the actual ileostomy bag supplies. I’ll have to pay out of pocket for these goodies, but until then am blessed with Home Nurses and what I can only describe as the equivalent of Costco’s sample stations, but it’s Ileostomy Bag samples. They bring in all of these samples for me to try. I’m still finding out what works best for me (a convex two piece velcro baggy seems ok so far), and I’m enjoying the free samples while I can. When I’m going to buy the supplies, I’l be dang sure it’s the kind of supplies I like. I have a belt strap thing that helps keep the bag hugged to the body, but are there any other crazy goodies I should know of? Any hot tips? These bags don’t seem to hold their shape, so I’m always cautious about half holding the bag when I walk around. And for those with ileo bag experience, how did you uh… exactly empty it? If you’re too high up from the toilet bowl, it will splash toilet bowl water everywhere. In order to get close to the bowl, you have to kneel or aim veeerryyyy carefully. What gives?

Left: Newly changed bag with the awesome strap/belt thing; Right: My interpretation of 30 minutes later

Diet
Oh Bratwurst. I miss you. And any sausage with casing, for that matter, which just happens to be my favorite food. But nay, I shall not become depressed! Instead, I’ll drown my sorrow in meatloaf. I’m still having inconsistencies with my poo. Sometimes it’s thick-ish, sometimes it’s pretty liquidy. I’m still finding that balance as to what works, but out of curiosity, what fiber supplement works best? BeneFiber? MetaMucil? Colon-Blow?

The healing process is an amazing thing. I can’t wait to see what my progress is a month from now.

These posts might also help out:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• February 25, 2010 -- Commenter with Questions (13)
• December 21, 2009 -- Update (6)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)

Jacobs didn’t take care of himself when he was out of rehab. He chained-smoked, ate poorly and soon developed ulcerative colitis, a stomach ailment involving the chornic inflammation of the large instestine (his father died from complications relating to this disease). “It was really debilitating,” says Jacobs. “I was in a lot of pain, and it kept getting worse, with more outbreaks and flare-ups. I lost so much time every day in the bathroom, uncomfortable and ill.” He relasped in 2006, but decided to try a different way to address his problem: He hired a nutritionist who advised a drastic lifestyle change, with no sugar, dairy, coffee or flour, plus exceercise, macrobiotic food, a nap and sunshine every afternoon. “Instead of Wendy’s five times a day at weird hours, and Coca-Cola after Coca-Cola, now I’m drinking six bottles of water, green vegetable juice and wheat-grass shots iwth giners,” he says laughing.

(Grigoriadis, 2008, p. 136)

Here is a video with an interview with Marc Jacobs, showing how he eats healthy, he even takes VSL#3…

Video from Style.com of the fall/winter 2007 Marc Jacobs Fashion Show below.  People living with UC achieve great things. Hopefully, Marc will do public advocacy for UC since it affects him and affected his father.

Reference:  Grigoriadis, V. (2008, November 27). The deep shallowness of Marc Jacobs. Rolling Stone, Issue 1066, p 61-65, 136.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• August 4, 2010 -- Western Diet Causes Inflammatory Bowel Disease (0)
• March 27, 2010 -- Colston Thomas Mills (4)