Commenter with Questions

by on Thursday, February 25, 2010 12:28
This entry is filed under: Coping/Support

Hey Readers!

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

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13 Responses to “Commenter with Questions”

  1. avatar

    Jamie says:

    February 25th, 2010 at 2:53 pm

    Hi there – Welcome to the no colon club! here are my thoughts.
    1. I wore tank tops under all my t-shirts to help hold my bag in place.
    2. I wore maternity pants because my stoma was in a bad place as well. Let me tell you there are some hot maternity denim designs out there! There is even designer denim with the maternity band (Rock Republic and Paige denim). I landed on a pair of Gap Maternity jeans for about 50$. They looked super cute and nobody could tell that they were maternity and it allowed for my bag to expand and limit pressure on my stoma. 3. I wore hollister i think but tried them all. 4. I didnt feel good until about 2 months after surgery and then it was time for my next surgery! I like you was very sick (lost 40 lbs) so it took a while to get my strength back. 5. I had back pain but i think it was because my belly hurt too much to stand up straight so i walked hunched over holding a pillow to my belly. 6. I didnt feel weird after i stopped steriods and i had been on them a long time (~ 1 year). I think if you taper slow enough you should be ok but may be emotionally volatile.

    Good Luck!

    [Reply]

  2. avatar

    Mark says:

    February 25th, 2010 at 7:16 pm

    Hi, I used the phoenix belt which you can see in the bottom of this post. I liked it but after I got used to the bag, I didn’t use it and just tucked the bag into my pants and went on normally http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/ I used the two piece bag and that worked really well for me – you can see my bag set up here: http://www.jpouch.net/photos/surgery-1/ Advice on clothes – for me everything was normal, I didn’t have to do anything different, but that may be different for various people. You can see on those above web journal blogs my timeframe for feeling good. But overall I felt great pretty quickly after surgery.

    [Reply]

  3. avatar

    Colin says:

    February 25th, 2010 at 10:32 pm

    [ 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. ]

    I was given an elastic strap that hooks onto each end of my ileo bag at the time of my first surgery. You can buy the same thing on medical supply sites for pretty cheap, I’d imagine (It’s just cheap material and plastic) but it works like a charm. It keeps me feeling like my bag isn’t going to pull off from the weight of the stool inside it.

    [ 2)Advice on clothes! ]

    SWEAT PANTS AND COMFY “TRACK PANTS”! You’ll need pants with elastic bands that you feel comfortable in, at least initially. They’ll be your best friend because you’re going to do a lot of lounging around.

    I’m three months out of surgery #1 (of 3) and I am able to wear jeans and khakis when I need to, but I feel way more comfortable in sweats or track pants.

    [ 3)What type of bag works best for you? ]

    I was given a two-piece set by the Cleveland Clinic when they performed my surgery on me and that’s what I’ve stuck with. I like the ability to “burp” the bag to get some gas out when I need to.

    Basically, one part sticks to my stomach and the bag clicks onto that part like a piece of Tupperware.

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

    I more or less felt fine after a month or so. I had some exhaustion issues, but I was basically okay.

    You have to keep in mind that you’ll be between major surgeries and, even when you’re all done, you’ll still have just had a major surgery. You should expect to feel okay to live your life, but you’re going to have some aches and pains here or there for a few months after each surgery.

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

    Yes, I had pain in the small of my back for a month or so after my first surgery. It went away, though, and I’m fine now.

    [ 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. ]

    Yeah, weaning off of steroids is super difficult, especially the longer you’ve been on them. I experienced stiffness, soreness and a general feeling of exhaustion/depression for quite some time after I had weaned off of them.

    I’m perfectly fine now, but it took awhile.

    [Reply]

  4. avatar

    Denise Duhamel says:

    February 26th, 2010 at 7:23 am

    Hi guys, I had the j-pouch surgery last year with the take down in January of 2009 and I’ve been feeling great since the surgery but I have a question that maybe some you may be able to answer. Recently, I’ve been experiencing some pain, burning, itching and bleeding in the inside of the anus, I don’t know what it is, if it’s a fistula or an abscess but it really hurts and I would like to know how to treat it. I’m from a small town and had my surgery in Toronto about 5 hours away from home and I find it really hard to get some answers because none of the doctors here know how to treat my symptoms. I always have to call my surgeon’s office in Toronto and sometimes it takes them a week to get back to me. Anyway, if anyone knows what I’m talking about or have experienced similar symptoms let me know how you dealt with it. One thing that has changed in my diet is that I’m on anti-biotics for a sinus infection and I’m wondering if that is the cause. thanks

    [Reply]

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    Kanaka Reply:

    Daniel,
    There is nothing to worry about. I went thru the same thing a few months after my take down. Its basically, your stool is leaking on to your anus and thats causing all this. Following is what helped me:
    1. Increase your fiber intake. I am taking benefiber (4-5 tsps a day)
    2. Drink lots of water.Atleast 8-9 glasses.
    3. Take imodium–see and work with benefiber to figure what works best for u. I usually take .5 to 1 imodium every day
    4. Shower the anus literally and it helps
    5. Wash with water after every bm and then pat it dry with tissue. Then apply desitin or anything cream with zinc oxide.
    6. Also, my doc prescribed me a fungal steroid to help reduce the itching. I had posted it earlier to someone..so search and you should be able to find it.

    GL and email me at kanakab at hotmail.com if you have questions.

    [Reply]

    avatar

    Mark Reply:

    Denise, sorry to hear, that sounds really uncomfortable. I don’t know the symptoms of abcess or fistula, but it also could be an internal hemmorhoid. You know, you should go post over at http://www.jpouch.org and see if Jan Dollar (ex-nurse) can give you some insight, she might know your symptoms better.

    [Reply]

  5. avatar

    ML says:

    February 26th, 2010 at 9:45 pm

    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. A: First i would see if you can get on the pouches with the velcro closure on the bottom. They wrap up into themselves so there is no annoying clip. I had to use the clip for a short time due to when I reordered my pouches they were out of stock. UGH! For a way to cover the bag I choose to use the bella band. You having been pregnant may know of this as the band that helps keep your jeans/pants up when you can button them anymore. They come in cute colors and arent super expensive. they peak a boo from under most tops which is still a pretty OK current look so I dealt with it that way. My jeans wouldnt close either, luckily for me my surgery lead me back to my skinny jeans but the damn stoma wouldnt let me close them all the way with out complete discomfort.

    2)Advice on clothes! A: Unless I was going out I just wore sweats around the house…we are still in winter prior to my take down (2.9.10) so sweats and the bag worked out well for home with my babies. I also got lucky that sweaters were a little big now and loose so when I wore dressy pants I teamed it up with sweater and bella band. This got me through. With summer comming up you’ll probably be able to find some cute sun dresses to wear that you wont seem notice the bag with. But I cant vouch for that.

    3)What type of bag works best for you? A: I had a two piece and LOVED the velcro closure on the pouch!!!!

    4)When can I expect to feel normal, with no more pain from surgery? A: I never felt totally normal with the pouch. I always felt kinda not real. But I think that might have changed or I would have gotten into counseling to help me get past it if it was not going to be temporary. But as far as pain, the pain got better after about 8 week for me. I was always kinda sore and still a bit swollen near the stoma site. I would look down and there was always this little bump there but I think that goes down it time as it did decrease by week 12 but still there. I felt almost pain free by week 11 with one week left to go.

    5)Did any of you have back pain after surgery? My back is killing me! A: YES! I was on the table for over 7 hours so most of the pain came from that is what I was told. But than I could never get comfortable. I couldnt sleep on my sides for so long I think I finally could around week 10 lie on my sides. Being stuck on your back for weeks was torture and seemed to add to my pain. So I propped myself up on pillows and what seemed to help was having pillows under my legs. Prop your heals and calves up and tuck some pillows around your sides so you feel like you have arm rests but they are kinda under your back. I think I also found the flatest pillow in the house and put that under my back where it made the stem of a T from my head pillows. I also used two head pillows. I was surrounded by pillows but it worked for me. My husband joked that I was building my own castle around 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. A: I wasnt on steriods prior to surgery but when I did use them way back in 2004 and 05 for short periods of time I weaned slowly and got ambien to help me sleep at night. Those steriods made me nocturnal and helped me to gain some unwanted pounds that are now finally gone!!!

    I hope some of this helps. I do swear by the bella band and the velcro pouches!!
    Stop by my blog if you’d like and read my story. Hardest part for me was dealing with mommy guilt post surgery number one but surgery number one was SO life changing that it was just all so emotional. My second (take down) has been much easier emotionally and not so much mommy guilt but I think it was because I was better equipped to handle the experience or to know what to expect from say hospital stay or what to tell my little people. ML

    [Reply]

    avatar

    Anthony Reply:

    Google stealth belt…it really made a huge difference for me I know this post is way late but if you haven’t heard of it by now check it out!!

    [Reply]

  6. avatar

    Nikki says:

    March 24th, 2010 at 7:57 am

    Hi Megan, I was diagnosed with UC when I was a senion in high school and struggled with it for about 5 years I was in and out of the hospital. then in 2005 I had my first child and to my surprise had a healthy pregnancy with no flairs! However that all changed after I had my son. I had the worst flair ever and long story short I had my surgery. I had to have a bag for only 5 month before I was able to have my jpouch surgery. I know that is a short time so I shouldnt complain but it was the longest 5 months of my life. But in that short time I did learn so things that might help you.

    First – the bag I used – I am a petite women, only 5 ft so I used a pedriatic bag it was shorter so it didnt hang down between my legs like the adult bag. It had to be emptied more than the adult bag but for me I was changing the adult bag just as often anyway b/c I felt heavy. and the other thing that made my like easier was I used the disposible bag by holister, they are more expensive but in stead of cleaning it out you just remove it and put in a bag and throw it away. since they did cost more I only used then when I left the house, I used the others when I was just at home.

    Second- for clothes- I was lucky b/c my bags was just above where most of my jeans fit me.

    To hide the bag I either wore a long fitted tank top ( I got mine at old navy, the layering tank) or I used a tube top down around my belly, that really helped and it was a cheap alternative to buying something from the medical suppy. I also found I was more comfortable in “intimate situations” with husband with the tube top on.

    After my jpouch surgery my life got much better!! I have my pouch for four years now and my health has been great- better than ever! I have since had two more children with healthy problem free pregnancies. It is safe to say that my fertility was not compromised in the surgeries!!

    I hope that this helps and I left alot out so if you have anymore questions feel free to ask. I would love to talk and help you. I didnt have anyone to talk to when I went threw it and it would have really helped me I think.

    Best of Luck

    Nikki

    [Reply]

  7. avatar

    Flashing Beacon · says:

    November 15th, 2010 at 12:52 am

    i got pregnant a couple of months ago and right now i am choosing the right kind of maternity clothes that is comfortable ‘`-

    [Reply]

  8. avatar

    Myrtie Dorame says:

    May 3rd, 2011 at 4:14 am

    It’s a pity you don’t have a donate button! I’d most certainly donate to this outstanding blog! I suppose for now i’ll settle for book-marking and adding your RSS feed to my Google account. I look forward to brand new updates and will share this site with my Facebook group. Chat soon!

    [Reply]

    avatar

    Jackie Z. Reply:

    Hey Myrtie, I wanted to let you know that I blog for this site, and also run my own blog devoted to surgeries and Jpouch things. its bloodpooptears.wordpress.com. I talk about my experience and do some product reviews too. Also..what is your facebook group?

    Thanks.

    [Reply]

  9. avatar

    Bado Laddi says:

    May 17th, 2011 at 6:20 am

    thanx so much for this article ,very nice post …I’ll come back here oneday !!! …

    [Reply]

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