Take down in 10 days!!!!

by on Friday, May 27, 2011 9:24
This entry is filed under: Coping/Support

Hey ya’ll. There is a lot of update on so bear with me. As a lot of you know, I was traveling to Cleveland Clinic to have my surgeries, and used to rave about how wonderful they were. Well over the last year, they slowly became less than wonderful. (more details about this on my other blog). Long story short, for my last and hopefully final surgery, I am switching surgeons and clinics. I was so scared to change especially this far in, but I did my research, consulted my jpouch friends and found someone that isn’t willing to give me extra unnecessary surgeries (like Cleveland).

Soon to be "ex bag lady"

I want you urge you all to take control and be your own advocate. Just because our doctors are “in charge” of our medical cases, doesn’t mean they always know best. Get second opinions the whole duration of surgeries if you’d like, and if your surgeon stops working for you, find someone who will. Switching is scary, but I really think I’m making a great choice. I guess we’ll see. Which bring me to this….

10 DAYS!! This has been 15 months in the making! I have had complications, extra surgeries, stoma problems, blah balh balhla…but in 10 days, I shall be pooping out of my butt like the rest of the world!!

So to all my jpouch people: I’m trying to make a list of the essentials for post op. I know there is some butt cream or something, and depends pads? I have no clue. What are the “must haves” for after your butt is hooked up again?

Thanks to Mark and Megan for this site..it has helped me a lot through this journey…and I’m sure it will also through the next chapter.

-Jackie

bloodpooptears.wordpress.com

 

 

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36 Responses to “Take down in 10 days!!!!”

  1. avatar

    judy says:

    June 1st, 2011 at 7:56 am

    I am going on 24 years post surgery. My surgeon suggested putting corn starch around the anus and I do think it gave my a great deal of relief. After a few years as number of bowel movements decreased it was no longer necessary. He also suggested using a small amount of toilet paper or gause wadded up and kept against that area. I will say 24 years later I still need to do that because even the smallest amount of leakage does cause irritation.

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    Pam says:

    June 6th, 2011 at 5:32 am

    Stock up on medicated wipes and hemroid cream. The medicated wipes help clean the anal area and are soft (unlike most toilet paper). Buy the large packages and purchase the individuals for your handbag when you are out you will always be covered. The hemroid cream is medicated and helps control irritation from runny stool. Good luck.

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    Dennis says:

    June 13th, 2011 at 3:44 pm

    Hey how is it going after your takedown. if you would like to chat just email me. I am male and 39 and have had my j pouch for about one year and four months. I can give you hints and tricks. I can give you some fresh perspectives at a time when you really need them.(p.s. the burning does become managible)

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    James Reply:

    Dennis 
    I could use some advise I have an ileostomy and 2 years ago went in in Dallas to do the take down it seemed fine then it began to fail and very nearly killed me. I was months in the hospital and was sent home finally and my wife told me yesterday back then they sent me home to die. I had 5 nurses at the time but I got better dlowly. I hate the pouch and i fear the jpouch and another failure because I know it will kill me. I feel like less than myself and have never recovered from feeling this change. I feel alone and I hate dealing with this stoma and the many trips to the bathroom. I sleep very little and have lost 45 pounds. That is the one thing I actually approve of. I am 53 years old and I was a very hard worker but now ever since I got sick I havecslowed and never improved I used to pain art work and I used to build flutes and I just have no energy or desire to do the things I love. We are considering the Cleveland clinic to attempt take down 2 but to put my wife through that I feel would be hard for me to do. If complications arose I could not bear it. I have lost 2 years of my life over this and my memory of the events is blank but hers is not. I am the only reason in my family to have this issue as far as I know and I also suffer with ankulosing spondylitis and constant pain every day. I get up and do my best though every day but my heart says just give up. I’m lost and confused and I really don’t want to live with this stoma the rest of my life. 

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  4. avatar

    Dennis says:

    June 13th, 2011 at 3:46 pm

    let ne know if you need my email or such

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  5. avatar

    g says:

    June 30th, 2011 at 10:13 am

    Calmoseptine ointment is the best thing you can buy. I get it through ebay, cheaper then farmacy. Hope u doing well.

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  6. avatar

    Rita Pruitt says:

    July 18th, 2011 at 8:44 am

    I’m getting ready to have my take down at the end of Aug-2011 and I’m scaried to death of everything I’m reading. I’m just tried of going through pain and hospital stays. I’m reading a lot on the net and not good things. I’m open for any discussions. Thanks for listening.

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    Dennis Reply:

    Relax first, most of the responses on the web are based on poeple who have trouble. there is a high percentage of people who do well and do not complain about every day issues. Tell me more about your fears, time with the bag, issues you may have had. In return I will tell you of my experieces over time. Let me know of your concerns. Also are they doing laproscopic? What is your age? (younger people tend to respond better)

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    Rita Reply:

    Hi Dennis,
    I’m 47 and had a lleostomy at the end of May. I’ve had UC for 3 years but never had many problems until Sept 6, 2010. That’s when things changed and my life was never the same. A month after my surgery I ended up in the ER because I was in such pain that pain pills wouldn’t help. I had a lot of fluid billed up around the pouch. When they did the scan not only did they find that but also a blood clot. So now on warfaim and they put a filter in. Which was very painful at the time. I have to use a cream everyday to make sure that I can continue to release the fluid. I’m trying so hard to be positive but when I think of going back to have another surgery and to be in more pain again. I’m just so scared. Thanks for taking the time to listen and response. I’ll read more of the other stories.

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    Dennis Reply:

    Have they done a pouch study with barrium to determine if there are any leaks? Is the fluid build up you are talking about the muccus that builds up in the pouch. or is it ouside of the pouch? I waited four months before my takedown. I went to Dr. Bruce Harms in Madison WI.

  7. avatar

    Dennis says:

    July 18th, 2011 at 3:00 pm

    Hey Rita , Take some time to read the net bloggers to the right. they are more complete stories. In general the j-pouch is not perfect, but it is soooooooooooooo much better than having UC.

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  8. avatar

    Jackie Z. says:

    July 21st, 2011 at 11:36 am

    Hey Everyone,

    The quick update is that everything is going swimmingly. I wanted to thank you all for your comments. And to Rita…(not to do self promotiom) but read my other blog that I listed above. And if you ever want to chat…email me. I have lots to say about this jpouch…and most of it is all good.

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    Rita says:

    July 21st, 2011 at 5:16 pm

    Hi Jackie,
    I would really like to talk more with you about the Jpouch and your expericene. I’m just so scared but I don’t want to have the bag for long. I guess I’m just starting to feel better and the though of more pain. I didn’t see your email address.

    Thanks Rita

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  10. avatar

    Danielle says:

    September 24th, 2011 at 7:59 am

    Everybody,

    I had my take down 8/12 & have had serious butt burn and I’m not able to hold the BM’s. I’m having to take several (20+) trips to the bathroom, either to release a little poop or to change the pad I’m wearing to not soil my clothes. Since you have gone through this, when will things get better? I did start taking immodium yesterday before dinner & things were better, but I was still up throughout the night with leakage issues and/or needing to use the restroom. I know this gets better…how long did this issue last for you and what other advice do you have??

    Thanks,
    Danielle

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    Dennis Reply:

    Feb. 15th 2009 was my takedown and it took six weeks to get into a rythem. Right now your body is adjusting to the new system. My questions/ comments to you are: 1. Are you taking any vitamins or supplements? 2. Start eating ALOT more carbs. They will swell in the digestive track and slow your system down and alow it to learn how to work.3. Protiens of animal source will turn to liqiud when digested( being milk, meat, fat.etc.) they tend to burn on the way out. Balance eating theses food with carbs. 4. Initialy get alot of salt into your system.Ssoup & crackers are easy and reduce the amount of water intake. (forces body to try to absorb the digestive fluids in the small intestine). Pop is bad or anything else with lots of sugars. The stomach valve opens up and lets sugar liquid through. Your diet though is trial and error. Watch what you eat and the following stool reaction after. There is a possibility you might have developed Pouchitis with your new pouch.It is very tender and can get infected easily. See your doctor he will most likely givre you Flagyl(spelling ?) Prilosec has helped me with my acid level, but diet control forces you to eat healthier Please read all of the blogs to the right. use their experience to help yourself adapt.

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    Danielle Reply:

    Dennis,

    Wow! Thx for the inside information. Most of your response, I haven’t heard before. I’m not taking any vitamins/supplements, but before te surgeries I was taking once a day chewables. Do you think it be ok to reasons taking them? I’m eating quite a lot of carbs (plain bagels, English muffins, bread, pasta, potatoes, etc), however it doesn’t seem to be working/helping. I took 2 chewable immodium this morning and am going to see how that affects things today & take 2 more before dinner. Thank you for your insight. On the Pouchitis, I heard one of the symptoms is blood and abdominal pain…i don’t I’ve those, but could it still be a possibility?

    Thx again,
    Danielle

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    Sandra Reply:

    Hi Danielle, I had my surgery on 9/14/09 and it was a frustrating 6 mos. Lots of trips, butt burn, blockages but I got through it and my pouch adjusted, I adjusted and everything is so great now. Patience is key. You might want to try taking fiber supplements to slow things down, like metamucil wafers. Experiment and you’ll find what works. Congrats on joining the j- pouch club. Check out jpouch.org. There is a great forum on there.

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    Dennis Reply:

    Danielle,
    First of all if you have pouchitis most of the tricks don’t work. If you can feel your pouch right now and it feels irritated, you most likely have pouchitis.You do not have to blood and severe pain to be infected. Think about a cut on your finger, when infected does it bleed? Most likely not but you know it is sore. Please bring the concern up to your Doctor, if your pouchitis gets really bad you could loose your pouch. I have had pouchitis once and I thought it was going to be this grand pain but it wasn’t. Two days after being on the anti-biotic, my pouchits did start to hurt bad and my abdomen swelled it took four days for the pills to work. I currently take gummi vitamins now, but about only once every four days. Gummi’s are easy for the body to absorb. Too many vitamins will give you kidney stones. They really suck, mainly because your urine amount is reduced and you can’t drink and absorb enough water to flush it out. Immodium will work, but start trying diet after a while. The body will adapt. If you are too reliable on immodium, your systsem will start being reliable on it. Use it for now until your system starts behaving and then try to wean youself slowly. You diet will always be a dance. Eat, and learn how your body reacts. Everybody is different, but yet everybody is similar. Kandoo wipes helped me alot, unscented only, the higher moisture content helped clean better plus they are smaller. One trick that hepled me heal my butt burn was baby powder. Once you are done cleaning with the wet wipe, pat dry with a towel. Put some powder on some TP and pat it on all around the area. DO NOT use gold bond. The medication used in that numbs around your but and you will leak more. My worst accident was then. YUCK. Any way good luck,
    Dennis

  11. avatar

    rita says:

    September 25th, 2011 at 12:14 pm

    Hi everybody
    I haven’t been on for awhile. I just had my j-pouch take down on Tuesday (9/20/11). I just come home Friday and I’m trying to eat but nothing is staying down and if it does it’s hurting in my gut until it passes through. The doctor had said if I had any more problems to go back to liquicks. I just stop taking any pain pills because they said that can slow things down. I’m just so hungry but scared to eat anything. Please give any advice.

    Thanks, Rita

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    Dennis Reply:

    Rita,
    soup and crackers, oatmeal. reduce water amount but more often. Chunky soup worked for me, I cannot stand chicken noodle now.Eat lots of crackers. Keep your salt up(soup and crackers) and your sugar up(oatmeal with honey). Keep off of supplements for now, they will be an irritant. Italian bread and a little bit of butter. Bulk up your diet with gentle Carbs. Good luck, it will get better.
    Good luck Rita

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  12. avatar

    Danielle says:

    September 25th, 2011 at 6:57 pm

    Dennis/Sandra –

    Thx for your insight and experience. Last night I had a baked potatoe for dinner with butter/sour cream (just a little if each). I took 2 immodium before dinner an 1 more before bed. Last night I got up 2 times and had the best sleep!! This morning, I took 2 more immodium and a Tsp of benefiber before lunch and 2 more immodium before dinner. Today, I’ve gone to the bathroom about 6 times and things look like they are slowly down. The color coming out is no longer yellow, but brown!! Seems that I’m digesting a bit more. Is this supposed to happen? Tomorrow, like you said Dennis, I’m going to tale less immodium and see what happens.
    Is it ok to take 4-5 immodium a day? When ur system gets to ‘normal,’ what color is ur poop?

    I will start taking gummy vitamins again next week…hopefully, the system will start to kick in and it won’t upset anything. Thx also for the tricks..I’ll try baby powder later tonight.

    Thx again!
    Danielle

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    Dennis Reply:

    Danielle,
    Keep on taking your immodium until you stabelize. You will know when to reduce, your little voice will tell you. I am 1 1/2 year past takedown and I average 6-8 times a day. Yes the stool comes out brown and should have a flora starting. There is no perfect diet, just eat and learn, learn, learn. Control your water intake, keep up you salts for now until your body learns to absorb both better.

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    Danielle Reply:

    You mentioned to Rita to eat oatmeal? Is that ok to eat now? I thought this couldn’t be eaten fir awhile. Thx again!!

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    Dennis Reply:

    Oatmeal is VERY soft on the digestive track. Have at it. You will notice in you stool. Good flushing agent when things seem out of wack.

  13. avatar

    Rita says:

    September 26th, 2011 at 8:18 pm

    Dennis thank you so much for the help. I haven’t tried the oatmeal yet but will soon. The crackers have really helped. I’m starting to feel better. Now I’m trying to see how long it should take the food to come out because I ate at 7 this morning and took until 8 tonight for some of it to come out but I still feel bloated. I take that different foods digest differently. But how long does the process really take? When can I start eating real food (ribs, pizza or a stake)? I’m just so tried of pain, I not sure what to do anymore. Also my wound is open were my stoma was because the doctor says it has to heal from the inside out. That is to take 4-6 weeks for it to heal. I will take any and all advice. So much to learn.

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    Dennis Reply:

    Rita,
    My food takes about 6 hours to go through, but that is my system. Different foods take different times, there is no magic numberThe one trick is to watch how thick the stool is an balance it with your water intake. Always try to keek a semi-loose stool. Too thick, is hard to push out and blockages may be allowed to occur. Too thin and nutrition tends to be washed away. Since you are fresh with your takedown, your system will have trouble absorbing salt and sugar. When your body adapts, intake will normal out. Eat soft foods for around a month, If you eat something your body does not like, it will let you know! Salty soup,crackers and sweet oatmeal should help you feel better. Canned vegetable are great and easy for you to digest. Chew it well. Tombstone pizza I can handle well. Pizza hut is difficult. You are different, eat and learn!!!!!!!! You can eat whatever you want right now, just lessen the quantity. Remember to always eat food WITH CARBS! Animal protien turns to liquid in your system. Tend to eat only carbs first Bread and potatoes work well. Ease your way into your favorite foods. Your diet is your own. If you have high acid trouble let me know, I have tricks for that also. As far as your stoma, when I was at UW Madison hospital they stapled the stoma area shut and staples were taken out around two weeks later. As long as every thing is clean, all will heal at the same time. Sugar & salt should help you, right now you need both Oatmeal with honey, and soup and crackers. You will learn to listen to your body better as you eat everyday.

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    Danielle Reply:

    What about fish? How does that respond to you? Another question I have is about the oatmeal, what kind have you found is best? Instant, steel cut or regular?

    Thx!

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    Dennis Reply:

    Deep fried foods can offer trouble. Do not eat the lemon! High protien and fat content creates high acid stool. MCD’S fish sandwich OK. I like regular oatmeal myself, with honey. Honey seems to be an easier sugar to digest. Add raisins or other stuff. Eat and learn though, you will digest differently than I do. You acid triggers will vary day to day. We are all different but much alike.

  14. avatar

    Rita says:

    September 27th, 2011 at 5:52 pm

    Dennis,
    Thank you so much for all the help. I’m having hard time today so I haven’t eaten much. Just been resting but have a lot BM’s today.

    Thanks, Rita

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    Dennis Reply:

    http://www.vsl3.com/
    this helped me get my sytem back on track. VSL3 DS worked well for me.

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  15. avatar

    Wendy says:

    October 22nd, 2011 at 6:36 pm

    Here’s my story and some tricks I ‘ve learned over the years. Well, I may be one of the early patients to have the j-pouch surgery done. I have had my j-pouch since 1994, a whopping 17 years. Had it done at the Mayo Clinic. It was the best thing I could have done for my ulcerative colitis. I had some problems at first, sore bottom and a few bladder infections but over the years it has become second nature to have a j-pouch and it has made my life so much better. So here is what I have learned over the years: Invest in a hand held shower nozzle. If you need just a quick clean-up it can save so much time rather than taking a full shower. And everyone knows that a clean bottom is the name of the game. Also through experiments I have learned that if I don’t want to get up in the middle of the night to use the bathroom, I drink lots of fluids in the morning and during lunch. Then I restrict my liquid intake with my last meal of the day. No beverages, soups or runny anything with the evening meal. Also if I eat supper earlier in the late afternoon it’s a plus. I have retrained myself to drink lots of fluids to keep hydrated. And overall I can eat ANYTHING and have put the pounds on because of it. Food is my friend now :) I still have symptoms of the disease like sore joints every once in a while for a few days, mostly the elbows and knees. It’s really weird because that used to be my first symptom before the bloody stools would start. Now no blood, yippy! Life is so worth living now. I leave you with this funny note…don’t forget to invest in the toilet paper companies in your portfolio, seems like there is getting to be more and more of us with a J-pouch out there! 😉

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    Ryan Donohue says:

    October 27th, 2011 at 7:09 am

    Hello, I’m a 27 year old male from CT. I started having problems when I was 17. After i lost 80 pounds or so and a few doctors and surgeries I am back to pretty good health. I go about 10 times a day but that’s awesome compared to what I went through in my early years! how are you doing now?

    Ryan Donohue

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  17. avatar

    Heather says:

    December 31st, 2011 at 4:59 pm

    Hi Wendy,
    I’ve also had a J pouch long term, since 1991, things were fine, until the specialist wanted to put in some PTQ implants as he thought they would cut the amount of bms(about 10 x daily), they are some kind of material implanted into the anal sphincter muscle, since then I’ve been in hell as they have broken up, migrated to other muscles, and reject in bits and pieces, I rejected one after 3 months, then 3 more have been surgincally removed, since Jan 09. They never decreased the number of bms either, just cause alot pain. I also get sore joints, and only now are the docs starting to say its related to UC, rheumotoid arthritis, I have to have a blood count soon, also as I had pain intermittently I didn’t think it was anything much. On another site I go on a few people who have had their J pouch removed have also lost all other symptoms, like arthritis, its something I have been thinking about lately, get rid of the implants and hopefully arthritis too, is there an end to this disease!

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    Wendy Reply:

    Hi Heather,
    Sorry to hear you’ve had so much trouble. I have not heard of PTQ implants before, maybe because I haven’t had too many problems. My Dr. also checked me for rheumatoid arthritis and was negative. He said because UC is an immune disorder that it can have many effects on the body and not all people are the same. The body just one day decides to attack itself and in our case it has attacked the intestines and joints. Sucks huh? When my joints hurt I have found that hot baths help. Sometimes my Dr. puts me on a 7 day prednisone pack if it is real severe and it helps a lot. That does not happen very often so I’m lucky with that. Talk to your Dr. about this treatment if your test for RA also comes back negative and the pain is real bad. And maybe getting rid of all the implants will also help you. Hope the future is brighter for you as there is no end to this disease, only controlling the symptoms is our best answer. Keep me informed on how you’re doing and keep your chin up!

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    Heather Reply:

    Hi Wendy, thanks for your reply, been lazy and still haven’t got the blood count done, but arranged the bone scan and physio so I’m getting to it(slowly), bit sick of all the bad news, recently my eye went really red, so had to see my eye specialist, only went there a month ago and he said see you in 12 months, then I’m back after a month, turns out I had a episcleritis(spelling)attack, due to the UC, just made my day, I see him as I inherited glaucoma from maternal side, got UC from paternal side, generousity aye!
    I also get flare ups of erytherma nodusom, on the lower legs normally, its a really red and sore lump(mine also gets itchy)that comes up and slowly goes down, leaving a bruised look also UC related. I don’t like to take steriods due to the glaucoma so try my best to avoid them. Had a recent EUA and got a lung infection courtesy of the non-sterile equipment used, and the doc told me to take steriods, but I just suffered til it went, completely against them, terrible side effects, my friend got brittle bones due to them, tho I expect a short course is fairly harmless. The idea of putting warmth againts the aching joints helps so thanks for the input, here’s hoping to a complete cure for IBD!!!!! Heather

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  18. avatar

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    June 27th, 2014 at 11:07 am

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