Contact Us
We’re always looking to talk to people about their medical issues, so don’t be shy, contact us! You can leave comments on any of the posts and we’ll respond to them. Or, send us an email!
Email Nadia at:
Nadia@UCVlog.com
Email Dennis at:
Dennis@UCVlog.com
When you contact us, be sure to tell us your story with colitis, Crohn’s disease, or any other medical conditions you have related to the digestive tract. Tell me how old you are, how long you’ve been suffering with it, and what successes and failures you’ve had with treatment and medicine.
If you have your own blog or videos, let us know and we’d be happy to check it out. Who knows? Maybe we’ll trade links and help share our experiences with the rest of the world.
If you ever come across any medical news stories or research stories or of anything else you think is relevant to the IBD community, send us a link!
Communication is essential to dealing with disease, and unfortunately for most of us, we don’t know anybody or have meet anybody in person who’s had IBD and who understands what we are going through. But through the magic of the Internet, we can find support!
Hi Dennis~
I just have to tell you something. Do you watch the show ‘The Big Bang Theory’? I LOVE that show, it cracks me up. I look forward to watching it every Monday. You really remind me of Sheldon — looks and personality (although you’re not nerdy).
Hope you’re doing as well as possible :)
~Jennifer
Haha, for some reason, I thought this message was going to be sent to you via email — oops!!
I also forgot to tell you something. I was getting my nails done yesterday. I’ve only been to this lady twice — she was recommended by a friend. I’ve been looking for a certain type of product and just happened to find her (what’s the point?!?). Anyway, she was telling me about her daughter-in-law (is that too many hyphens? Is that how you spell hyphen?) and she was saying it’s amazing she got pregnant because she has COLITIS!! Seriously, I’d never heard of it before you. So, I told her your story :) Is that the same as UC?
It snowed here last night. Be well.
~Jennifer
Hi Jennifer,
I have not seen that show although I looked it up to see if I resembled him. Maybe? Although, I can’t promise I’m not nerdy at times. I like space documentaries, anime, old videogames, and samurai swords, so that makes me a nerd in many ways.
And yes, colitis is usually short-term for ulcerative colitis. Though technically, there are different names for colitis depending on how it affects the colon. I had pancolitis, meaning it was throughout my entire colon.
Hi Dennis, I just wanted to tell you how amazing your blog is. It has given me the oppertunity to understand what life for someone with a stoma is like, and the struggles that you have faced. I’m a nursing student and your experience can help me and other nursing students, know how to help and teach others about how to care for an ileostomy, and hopefully better understand the struggles and fears they face. I wish you the best of luck with your upcoming procedure.
-Vanessa
Hi Dennis, I want you to know, I do know what you are going through. I had Crohn’s Colitis, which is very much like Ulcerative Colitis. I had my bowels let go in public several times. It is very embarrassing and upsetting. I have had an ileostomy now for 10 years! It does get better! I do still have Crohn’s though, but it is remission.
As for swimming, as a woman, I do wear a 2 piece suit, but a tankini suit, so that it hides the pouch somewhat. I have had leaks, bags pulling off, etc. If you can imagine it, I’ve been through it.
If you want to talk privately about any part of ileostomies and problems with the colitis, just email me at pswone@hotmail.com. I am also on facebook. Kelly Reading Doherty.
Good luck, and Merry Christmas!
i love my ileostomy, ok not funny i know, i really hate it
Hi Dennis
I had my my j-pouch operation on January 12, 2009. i started questing internet after my discharge. ur blog is quite useful.
my takedown will take place in 2-3 months times.
i will be in touch with you. good going
my email is capricorn_king@hotmail.com
Hello Dennis, Trust you are well, your blog is helpful. i am going in for surgery in 3 weeks, ive had my STC but unfortunately my rectum is still diseased. They will remove it and form my j pouch. Did you have any joint pain after your STC? Glad your visits to toilet settled quickly, hope for the same once i get the takedown in 3 or 4 months!!! Did you have any complications i.e. diseased stump after STC? Tanks for doing the blog,its kept me in a positive frame of mind. Good health to you and yours for the longest time. Slainte(cheers) Alan Mackay Scotland.
Hi my name is Tarek
i was curious to see how bad things could of been for be but was inspired by the courage of everyone on this site.
i was diagnosed in 2004 and medicated until 05. i was one of the fortunate ones not to require surgery. i took up boxing in 07 and it greatly reduced any pain and i eat healty as is. sometimes i get the cramps but i feel fortunate compared to the many sufferes out there.
i can’t help but wonder how things could of turned out and am greatful for the support of people on this site should the future be unfortunate god forbid
you guys motivate me
cheers Dennis
Hi Dennis~
I have had UC since January 1981 — 28 years! I just came from a consultation with a colorectal surgeon. The whole idea of surgery is upsetting to me, so I want to thank you for sharing your experience on You Tube. I’m especially grateful for the episode that shows your scars. This horrid disease has had a profound impact on my life, yet I have been terrified of surgery. It’s only recently that I’ve come to terms of having surgery and have begun the discussion with my gastroenterologist and now with a surgeon. Thank you again.
Dennis,
I am so happy that I found your site!!! I was diagnosed with UC at 16 ( just turned 30 last month) and have decided to finally have surgery next month. I am terribly scared, but you have brought so much comfort in just watching your videos and knowing someone else has been there, done that, and is a survivor! I really appreciate your honesty and all the work it must take to keep up this site. Please know that you really are making a difference in other peoples lives-especially mine! Take care and thanks again.
Blair
hey dennis! i just wanted to thank you – i’m a nursing student, and your videos are really informative & helpful to me. thank you very much! good luck & more power to you.
Hi Dennis,
I saw your videos on youtube and I thought you might like to post some of the videos at http://www.stoma-innovation.com. It is a new website (I am one of the admins) where you can participate at a Stoma Innovation Contest. One of the topics is:”Create a video/pictures/text telling how you have come to accept your stoma.” The best will get 1000€. Basically you can upload any solution that improves stoma products. It might have a great impact for the future and you can help others. This is a chance to become a co-innovator and get feedback from experts and users from all over the world.
It would be great to see your video on the website!
Take care!
Sandra
I salute your spirit, you write in your blog that be free to tell you any problem related to ulectra colitis.Its a great work to humanity and i think you are doing a great work.Hope you keep up the good going—————————————————
travis
Find the latest news about Colon Cancer, Irritable Bowel Syndrome and Colitis. Discuss Colon related issues with members of the Colon Health Community.
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WOW Dennis! This site is AWESOME! Thanks for posting the info. on Camp Oasis – There are sooo many kids and parents out there who need support and camp is the perfect place to start! LIZ
Hi Dennis,
Great blog and videos. I completed my full set of the operations (I now have a fully working internal pouch) October 2007. When I was going through the process of understanding my options (over and above my consultant and surgeon) I really struggled to find good positive factual information about UC and various procedures. Your blog is spot on.
I now lead a very normal life and since surgery got married and we have 14 month old twin girls.
I wanted to know whether you have formal links into the UK at the moment? Would be keen to communicate more in private email.
Andy
Hi Dennis,
You have touched on most all of the j-pouch subjects except butt burn. I am 7 weeks out from my take down surgery and have been having issues with this subject. Calmoseptine ointment has been my life saver, but I was wondering if it gets better over time as the pouch adjusts or is this something that we all have to learn to live with?
I would appreciate your thougts.
Thank you,
Bill
Hey Bill,
I’ve been holding off on this topic so I had a chance to try some different ointments. I’m not sure if any one is better than the other. But I notice the burn comes and goes in phases. During periods with more watery stool, it hurts more since the stool is more acidic. But if you can get into a period with thicker stool for a few days, the pain goes away and might be gone for a week or two. This definitely does get better with time. I often have burning every time I go to the bathroom, but now it usually just lasts for a minute or so.
Stay in touch,
Dennis
Dear Sir,
Glad to meet you. Sir, I have a colonoscopy operationed patinent. I am living in India. How can I obtain colonoscopy material such as: colostomy base plates, pouch, end clips etc. I am poor man but something educated, hence I can find you. I want to know about places in india mostly in maharashtra where I can obtain such material cheaply. If possible I want price list likely to be purchase.
Waiting for your answer.
Hi,
I’m not sure what you are asking for. If you are looking for colonoscopy supplies I can’t help you. Those are supplies in hospitals. Are you looking for colostomy supplies, as in you have a colostomy bag that you wear? I have no clue where such supplies are purchased in India or for what cost. I just know about American supplies. I did look at Hollister’s website and they only list one address for New Delhi where supplies can be purchased from. Maybe you want to check it out? The address is: http://www.hollister.com/distributor/country.asp?countryid=28
Sorry I can’t be of more help.
Dennis
Hey Dennis,
I have found your website very informative and your video blogs are brilliant. Im 23 years old just like yourself and after suffering with UC for three years I had an emergency colectomy in January 09 after I no longer responded to treatment. I had no choice.
I have been offered the ileo-anal pouch but to be honest the idea terrifys me. My ileostomy is working so well Im afraid of tempting fate and things going terrible wrong. I have had a few complications following my surgery and feel that I should just be grantful for what I have rather than always wanting more. Im just grateful to be alive with no more emergency dashes to the toilet.
Did you have any doubts before your surgery or were you just excited about being rid of the bag? Did you ever think about not having the J pouch?
From sarah
Hello Dennis, do you know if the chances of colon cancer are totally eradicated after full takedown jpouch surgery? alan
Alan,
There is still a very very very small chance of colon cancer. There is a tiny layer of mucus around your anus that is part of the colon system. That tiny layer, like a square inch in area, could still have colitis and could still get cancer. But it’s a fraction of a percent chance, from what I understand. Unless they performed a mucusectomy with you, you still have that layer. I have it as well. Keeping it in place is supposed to help your body tell when it needs to have a bowel movement. It’s nothing to worry about, from what I’m told, just something to keep in mind. You might want to ask your surgeon about it.
Dennis
I just want to say that it is hard to watch this even though I watched majority of it. While watching, I was very sad inside,felt like crying and I asked myself why would someone so young, brave, intelligent, and so much high attention to detail skill go through such a horrible diesase. I thought I had it bad. I take hypertension and cholesterol medications and was complaining until I watched most of your videos and became speechless. By the special grace of God you will live for a very long time in life. I will always keep you in prayers and everyone in the world that have UC too. Thanks for being very brave and I pray that this horrible disease will allow you to attend college and become an expert or professional in whatever you decide to read. The sky is your limit.
Hello Dennis, i hope you are well. i had my takedown surgery on tuesday 5th of May. All seems well at the moment. i am concerned about what you said about the loperamide(immodium), as my consultant in hospital prescribed me loperamide to help slow down and thicken my stool. i am only 4 days out of my surgery (1 day out of hospital) and would like to know if you took loperamide just after your takedown at all. Cheers.
Hi Alan,
My surgeon told me not to take any stool thickeners until at least a month after surgery. He didn’t want my stool building up in my intestines and stressing the sewed up intestines. So I didn’t take anything. It’s difficult to work through but the less you can use stool thickeners the better, in my book. It’s important to try and teach your j-pouch how to absorb water on its own.
Dennis
I had j-pouch surgery in september. I had to beg for the surgery because I was so young (15). FOR THOSE ABOUT TO GET J-POUCH SURGERY: You will be offered either a PCA or an epidoral. Take the epidoral. I took the PCA, and I had strange dreems and uncontrolable emotions. Although i’ve been off of it for 7 months, I still think about it sometimes.
Dear Sir,
I am a member of the Japan Ostomy Association.
I saw a youtube video which you made.
I would like your permission to show this video to other patients
in the meeting of the patient.
I’m sorry in poor English.
so I understand only Spanish and Japanese.
Toshio
Hi Dennis! My name is Holly & my 20-month year old son was born with Hirschsprung’s Disease which affects the colon. I won’t bore you with his long story but I did want to tell you I was so glad to find you on youtube.com. Your videos helped my husband and I alot as our son is now ready to go swimming for the first time and we weren’t sure if there were any waterproof ostomy guards or what exactly to do about protecting it. With him being so young, as a Mom, I was curious as to what all he was feeling having a stoma, if feeling anything at all so that one video on stoma sounds/feelings was interesting. Thanks for being so brave and helpful with this website and your input on youtube. God bless!! -The Mom- :)
hola Deniss!!!
En verdad mis respetos, me gustaria tener tanto la valentia de hablar de lo que te ha pasado y compartirlo a tanta gente, mi nombre es Norma, yo pase por algo bastante similar a lo tuyo me diagnosticaron CU en el 2005 fueron 3 años entre hospitales y todo eso ami me practicaron 5 cirugias y pase por lo mismo que tu a diferencia que a mi; mi reservorio no me funciono, despues de muchos intentos y estudios, optaron por dejarme una ileostomia permanente, me gustaria mucho estar en contacto contigo, o con personas con nuestra misma situación, siempre es más facil hablarlo con alguien que siente lo mismo que tu…
y de acuerdo contigo… seguir luchando..
Lo que no mata te fortalece….
Denisse hola!
In truth my respects, I would like to have both the courage to talk about what has happened and you share so many people, my name is Norma, I go for something quite similar to yours I was diagnosed with UC in 2005 were 3 years between hospitals and so I practiced ami 5 surgeries and go through the same thing to you that I, my pool is not my work, after many attempts and studies, chose to leave a permanent ileostomy, I would like to be contacted, or people with our same situation, it is always easier to talk with someone who feels the same as your …
and agree with you … keep fighting ..
What does not kill you strengthens ….
Do not go near the English I’m from Mexico I hope the translator helped me jajajaja
Denisse hola!
In truth my respects, I would like to have both the courage to talk about what has happened and you share so many people, my name is Norma, I go for something quite similar to yours I was diagnosed with UC in 2005 were 3 years between hospitals and so I practiced ami 5 surgeries and go through the same thing to you that I, my pool is not my work, after many attempts and studies, chose to leave a permanent ileostomy, I would like to be contacted, or people with our same situation, it is always easier to talk with someone who feels the same as your …
and agree with you … keep fighting ..
What does not kill you strengthens ….
Do not go near the English I’m from Mexico I hope the translator helped me jajajaja
Hello, nice to meet you Dennis, i am a 15 year old boy who has just battled with colitus for 3 years and won it with surgery. I find your videos and imput very helpfull to get past my complications and shame. Thank you again for sending the message out to all of us, and know that you are helping others with the smae terrible problem.
Hi Dennis. I wanted to thank you so much for this vlog. I just had my first surgery 1 week ago and I’m still in the hospital recovering. I started searching around youtube for “ostomy pouch” and saw some of your videos. I shared your vlog with my ostomy care nurse here and she really liked all you had to say. I am slowly making my way through your videos. I think I am on the same surgery path that you’ve just walked. It’s so great to see the thoughts of someone walking ahead of me. Thank you so much for what you’ve done!!
Leah
Chicago, IL
Hi Dennis, I just discovered this site about a week ago. I am 24 years old and was diagnosed with Ulcerative Colitis at the end of June after having a colonoscopy which followed about a month or so of progressing symptoms. At first I did not understand colitis and thought it would be something I would just take medicine for, heal quickly, and be done with. I was placed on Asacol taking 8 pills a day and soon got very down about the whole situation when the bleeding and frequency seemed to increase each day. I made moderate adjustments to my diet on my own. After almost 2 months of that, the doctor put me on Prednisone. Prednisone cut back the number of times a day I have to go, and after awhile, the blood seemed to disappear too. I just feel very exhausted constantly and still go about 4 times a day with diarrhea. I don’t like to be on medication (especially the prednisone), I am tapering off, and I am so afraid that the blood will start again. I am also wanting desprately to not have diarrhea. Over the past week and a half, I have become very strict with my diet. My in-laws recommended a book and a website (www.karenhurd.com) and I read it and was excited on the news about diet. She talks very simple about everything and her theories make sense to me so I was excited. It is hard to get that information out of a doctor b/c both the doctors I have gone to tell me diet doesn’t matter. I decided to follow the diet which deals with “healing foods” the first few days (white rice, white bread, rice milk, rice crispies, etc) which really does wear you out (I am a thin person…have always been…and I am fairly active so I lost weight really fast and lost all energy and felt awful). It is more of sustaining foods than energy foods. Anyways, she has you slowly add things (plain white chicken…easy to digest, etc) and by a certain day, you begin to add legumes. It is just that up until this point, nothing I ate before I started this diet seemed to make it worse, it just didn’t make it better as far as the diarrhea. The diet up until now has not changed a thing. I don’t know if beans are supposed to give you a solid stool? I read so much on the internet and it just seems like there are some foods where people have totally opposite stances on the same food. To me, I would love to be able to fix it with diet, get off medicines, and never have any surgery. It’s just that when nothing gets better, even some family members look at you and talk to you like you must be doing something wrong because something is supposed to work. I was wondering if you had any thoughts on nutrition and diet and its effectiveness. Do you know of anyone who has ever had this and it has never come back? (Just wishful thinking?) Also, when people advise a patient not to eat fiber during a flare up, does that mean they aren’t to eat it only when they are bleeding or is diarrhea considered part of the flare up still? I thought soluble fiber was essential to a solid stool, but I don’t know much on the subject.
I really appreciate your site. It is nice to see people with colitis who can still be so happy and live good lives. It is a real encouragement.
Denise a friend of mine said i should get in contact with you!my name is malik saunders iam a father,author,and a survivor.i was in a auto vers moving truck accident in oct2004.the seatbelt tightened up and ripped my diaphram apart.i had a total collectomy.i lost my colon and more than half my small intestine.i fractured my lower back and was placed in a induced coma for 7days with multiple blood transfusions.i have been surviving on T.P.N for the last 5yrs.the T.P.N is going to damage my kiddneys and liver sooner or later{is what they tell me}!so i have been talking with my g.i. dr about this new transplant.they attach a peice of small intestine on to mine so i can absorb more!have you or anyone on this site heard of this intestine transplant?also i wrote a book titled “serendipity”memoirs from the fith floor.{blurb.com)i travel through out california talking about the dangers of cars.6,000 teens a year are criticaly wounded or found dead!mistamalik@hotmail.com/ please check out my poetry shows on face book!may god bless you and heal you!
My partner had illeostomy op 6/11 and his bowels are not working as yet 12/11. Do you know how long this takes? He doesn’t seem to be doing as well as I had hoped at this point. Green sick etc. very uncomfortable still Thanks all for your stories they have helped me through an awful few weeks! Tough times at the mo, he is not accepting it very well. Any ideas on what I should be doing a home to make it ready and comfortable fot him when he comes out of hospital. Not much out there for partners of ostomys. Thanks. Angie
hi i saw your videos on you tube and am very curious if you might be able to lend some advice. i have been struggling with my body for about three and half years. ihad rectum cancer, they removed the rectum and i had a temp. colostomy put in. for the last two plus years i have tried to just say it will get better but nothing really did. i had a third colonoscopy done two weeks ago and they found extensive radtation damage from the prior treatment. i am just so miserable i go to the bathroom constantly it sucks. i have to things when you have the ilesotomy did you get use to it? i will find out next week what the doctors think and what to do. it just sucks not knowing what can help you with this i have no control at all. i thnk must best option is a colostomy i hope their is a better alternative but at this point i just want to have a life again.
Hi Dennis,
I stumbled across your Vlog on Facebook have been reading your posts on this website. Im so happy someone with some real life experience is putting information out there instead of ppl who have no idea what you go thru each and every mintute of every day! Its a tiring disease not just physically but mentally.
I live in Australia and turn 34 in a weeks time. I have had Ulcerative Colitis since I was 10 years old when I went thru numerous surgeries and spent a very long time in hospital – a year I think it was. I can tell you I have been thru it all!
My story is long winded so I wont bore you with any details but I just wanted to thank you for being so honest and candid about your experience. I am still learning with UC – there is always something new to learn. I just hope one day there is a greater advancement in medical help for us UC sufferers because it really is something that you suffer!
Wishing you health
Karen…..
Hi there Dennis
I’m a nursing student starting a clinical placement in a surgery ward where people will have surgery for bowel cancer and I was curious to know about ostomies and I thankfully came across your site. It is very clear, straight forward and gets to the hard facts. I realize what you are going through is very vulnerable information to share and I am glad you are courageous enough in putting the videos up because a lot of people are going through what you are too. Keep up the good work and keep fighting!! Your videos are an encouragement and I’ll go through more of them as time progresses to learn more about your journey!
Blessings,
Michelle
Hi Dennis,
I’m a 38 year old male and I have had UC for 23+ years and now I have the j pouch. I had the surgery about 2 years ago and Im feeling great, yes there is alot of ups and downs but over all I feel great. If you would like to hear my long journey story, let me tell what a ride it has been. Email me and I will tell you all about it.
Thanks,
Marco
The first poem that I ever wrote about UC…I’m sure that some of you can relate.
The Monster
I’m so hungry, but I can’t eat. The monster smiles.
I’m so tired, but sleep won’t come. The monster laughs gleefully.
A million knives constantly stabbing me
twisting, mocking,
slowly taking away my ability to overcome
the overwhelming pain.
I look at my friends
their entire lives ahead, futures bright.
Late nights, homework, companionship.
I get to spend late nights
with a monster.
I guess you can say,
that we are the closest of friends.
As much as I try
to avoid my encounters with the monster,
he always seems to find me.
Waiting, lurking in the shadows.
Keeping up appearances.
The monster and I share everything,
intimate details of our lives.
The more he tries to overwhelm me
the more I try to resist. Yet, he keeps moving in closer…
like a cat stalking its prey.
How powerful is this monster?
I guess only time will tell.
They say that what doesn’t kill you,
makes you stronger.
Well what happens when you
run out of strength? When you can
no longer pretend that everything’s okay?
When through the mask of a smile that you wear,
people can sense the sadness,
frustration,
exhaustion,
the burden that you bear?
Where does this moment of clarity
leave you?
In the waiting arms of your very best friend.
Did you receive my comment and questions on new web site?
My daughter was diagnosed with UC in April and as it is still difficult I would like to talk to someone from the camp. We live in Van Nuys, CA.
Thank you
Jon Savitch
Hello,
I really want to thank you so much. I have had UC for 20 years. It has been a very lonely and painful challenge in my life. Especially when I was first diagnosed, many children do not have any clue what I was going through and therefore were very cruel to me. I have recently found out that it is time to have the colon removed. I knew the day would come, but I kept thinking i had more time, but recently I have had a very bad flare up that has left me very ill. i have had many fisure’s due to the constant trips to the bathroom. A few days ago I had my consult with my surgeon. Though Im sure she is a very smart lady, she lacked in the bedside manner and I left the office crying, feeling scared and alone. She had told me I would leak with a j-pouch and life will not be the same. The thought of leaking… would I smell? would my husband ever want to touch me? would I wear a diaper along with my 10 month old daughter. I thought my life was over at 30. I was depressed and weepy for a few days. untilI found your website and videos. I felt not so alone anymore. My whole life i never had anyone who could understand what I went through. places I worked would get mad cause I had to call in sick, they thought I was weak cause I only had a little stomach ache, even in trips to the emergency room in so much pain from a flare up, and a anal fissure, the nurses were not to nice to me and didnt understand why I was there.
When i found this site it was like a prayer had been answered. finally people who understand and who have gone through this surgery and can tell me a real person’s view on it. I felt so much better. though Im still scared I may leak, or smell, I dont feel as my life is over. I feel like my life will be better and I will feel so much better to not be in pain all the time, I cant imagine what that is like. I cannot tell you what a blessing it is to have this support. You should be very proud for what you two have done, it means so much to a person like me who has felt very alone most of her life in this struggle. It has really inspired me to help. I want to be able to help others who are struggling. I do belong to my local CCFA and have done the take steps walks, but I want to do more. If you know of any way I can help please let me know.
thank you with all my heart I could never repay you for what you have done for me.
God Bless
Hey Dennis, and Nadia…
I’ve spoke to Dennis online, as I’ve uploaded a handful of videos on how to care for a prolapsed ileostomy… anyhow; I just had my corrective surgery, and all went extremely well. I now have a couple boxes, and I’ll put in an order for one more, as it’s free for now from Shields in California. I would like to donate these supplies… please, if you have any info that would expedite this.. email me.
Love John
Hi John! If you are looking to donate your supplies we would be more than happy to take them!! Send them to my address, and I will make sure the people of Haiti will receive your supplies. I’m organizing a shipment to go out in October! They will be taken straight to the people by doctors and nurses who are going to help with the redevelopment.
Here is the link to the address and more information: http://ucvlog.com/donation/
Thanks again! Hope this helps!
~Nadia
Dear Dennis and Nadia,
I have heard both of you talk about school. I am currently going through a medical program. It is a short program, 8 months, I am currently having another flare up and am told I need to have the surgery soon. I have heard that my school does not allow a leave of absence and that i would have to drop and start up where i left off but still pay for everything all over. I was told it could be hard to get loans once you drop. Have you had trouble with this? i am 29 years old and have a husband and child so I do not live with my parents and my loans are all I have to get me through school. I only have 4 months left, but my Doctors say I need to have the surgery now. I wasnt sure what my rights are and if you two could help me with this. Thank you so much for all the help you have given.
thank you
Jennifer M.
It makes me so proud to see your site! I am 55, diagnosed with Ulcerative Colitis at 17, had a complete colectomy with an experimental S pounch in 1982…No one back then wanted to hear about my adsesses or fistulas orleaky ostomy bags…it was all poop related and not spoken of. The two of you are talking about issues that face so many people, young and old, and have had nowhere to turn. I’m at work and I’m tearing up writing this to you. Please, if you ever hear of any oher old-timers with early pouches, let me know because I’ve been told most are dead or have had them reversed back to illiostomies. And if I can ever help someone else…I’m in Kansas City and I’ve spoken with people for years about the fear, pain, and depression living with IBD. You’re amazing people! And I’m so glad I found you.
Hi Dennis,
Hope you don’t mind me asking about your weight?
In the videos you look quite thin, is this the result of UC or the JPouch, or have you always been slender as your normal body weight?
Not saying you look ill :)
Thanks very much for the site.
Adam,
Check out my video “Weight Problems” to get the full story on my up and down weight.
But my entire life I’ve always been at the very bottom of what’s considered a healthy weight for somebody my size. And people ask about it pretty much every week in my everyday life, but it’s nothing concerning. I get by just fine and am pretty active physically. It’s just one of those genetic things, I guess!
Dennis
Hello Guys,
My name is Gal, I am 26 and i live in Miami FL. I had UC for 10 years-a very severe one. During one of my many hospitalizations my colon was perforated during a colonoscopy, which required an emergency surgery, and ultimately 3 total surgeries that ended me up with a J-Pouch. Because I had 3 surgeries and not the “usual” 2 , i was living with a stoma for a full year. Now I have the J pouch for little over two years and things are great (touch wood!) eating EVERYTHING, not taking any medications,working out like crazy everyday and enjoying life. I do go to the Bathroom about 7-10 daily, and do have minor accidents during night time, but overall i am in complete control, able to hold it for quite a while, and fortunately never had to deal with pouchaidis.
You guys are great, and i command you for building this website and sharing your story. I am always willing to help, and share my story and my experiences that i had throughout this entire process. In addition, if you are ever in the Miami area, I will be more than happy to buy you a cup of coffee :)
Stay healthy!
Gal
Hi my name is malik saunders{supermistamalik}in oct 04,i was in a near fatal car accident nthat left me in a induced coma for seven days.I awoke to a illeostomy{seatbelt damaged my organs}and a line in my chest for T.P.N (nutrition,electrolytes,vitamins}The T.P.N. runs for 18hrs a day it is keeping me alive.I have been back and forthe to UCLA dicussing a small bowel transplant.This has been a six year journey.I travel through out the united states talking to kids about ostomies and the dangers of cars.I wrote a memoir titled “serendipity” memoirs from the fith floor you van preview it at blurb.com.
please feel free to contact me for any help you need to educate people about ostomies.Also check out my you tube/supermistamalik or malik saunders story.
Hi Nadia an Dennis,
I have talked to you all b4. I just had my colon removed and take down surgery. WOW it ended up being a lot harder than i ever imagined. i was in the hospital for a month. i had complications with my bag and had to end up having my take down surgery earlier than expected. After a month in the hospital and 24 hours of drugs. When I came home i have been not only trying to get used to my j pouch and how it functions, but depression and coming off the pain meds has been so bad. They now have me on meds to help the coming down easier. My question is did you have any issues such as this. The depression. I cant explain, I mean im feeling better trying to get back to normal, and part of it I get. See im almost 30 and I have a husband and a 16 month old daughter. My poor husband has had to be a single parent, go to work to try and bring in enough money for the two of us to not loose our home, take care of our child, clean however he can…. I feel so bad that I cant help him, which is part of the depression. The other part, I just dont feel like me, if that makes sense. i was in this hospital for a month on so many drugs, with all I had was my nurses. I get here in the real world and I dont feel as though i fit anymore. I used to be the life of the party, I was an actress, i just got my degree in medical office specialty, I was the joke maker. now i have a hard time laughing. will this pass? did you have any of these happen to you? Help!!!!!
thanks
Hi Jennifer,
It sounds like you’ve been through a lot, and I’m really sorry to hear about your struggles. I’ve heard of other people in your same situation having problems with depression and whatnot. Nadia and I weren’t in the same situation as you after surgery, since we’re both single and without kids and a house and all that, so that stress wasn’t there.
Have you seen if there’s a CCFA support group in your area? Check on CCFA.org and put in your state. It might help to meet with other people in person. The pain after surgery does go away, but about the depression I’m not sure.
Sorry I can’t be of more help! We wish you the best in your recovery.
~Dennis
Hi Dennis,
My daughter sent me your message about your ulcertive colitis and thought I would be interested. I am 64 years old and have suffered with colitis for 17 years. They tried every kind of med on me that they had. Even some IV’s that cost $7,000.00 each time. These IV’s made all my joints hurt so bad that I could hardly move after a couple of months of these treatments. I was trying to find some type of natural product to help me. My daughter found what she thought was a good product and got me started on it. I was on it for a little over 5 months when I had my last colonoscopy and for the 1st time in 17 years, my colon was clear and healthy. They found no signs of colitis. I have felt so much better since taking this product, I only wish I had heard about it years ago. An Internal Medicine Doctor in Minneapolis area developed the product some 12 years ago and the stories of people having been helped are astounding. The product is “Vibe” and the company is Eniva. You can go on the internet and check it out. They don’t claim to heal or cure anything but only claim that their liquid nutrional product is all cell ready and helps the cells take care of your body. In my case and many many more, it has made a life changing difference. I was also border line diabetic and other issues and my labs came back all super. I no longer have problems with my lab work. I know this might sound way out there to you but I can only pass on what has happened to me and my family. We have had several good results with this product. Even our grand children have had such good results that they tell their friends and several of them are on it now too. People that knew me before, ask what has happened to me since I look so much healther and they can tell the difference right away. I couldn’t even go shopping with my wife if I didn’t know where the bathrooms were and how many toilets were in them. I now have my life back and can do just about anything I want to do. I can only say “Thank God for Dr. Ben”. He is the doctor that developed the product. He and his wife, a cardiologist at the University of Minnesota. He worked on finding a product to help his father, who was suffering from a heart condition. He felt there had to be something that could help him and he worked until he developed the product and his father is still alive and well today. Again, all I can say is go on their web site “Eniva” and they are located in Anoka, MN. They are having a huge conference there this week-end and people from all over the United States and other countries are coming to share their wonderful stories. I can hardly wait to go and hear all of them. I only hope you can share this info with someone that might be able to be helped yet. It is unreal. Sorry, it wasn’t in time to help you. God bless.
Larry Speidel – Wahpeton, ND
Hi Dennis & Nadia,
I just discovered this site and want to say THANK YOU for doing what you’re doing! I was diagnosed with severe UC (pancolitis) in 2009 at the age of 31. After 6 months the medications still weren’t working and my doctor told me to start thinking about removal of my colon. Finally, just when I’d almost decided to do it, something kicked in and I finally got better. I’ve been in remission now for about 5 months (knock on wood!) and I’m doing everything I can to stay that way. I know UC is very unpredictable and we don’t know what sets it off, but I’m staying on all of my meds at full strength (minus the prednisone), eating an anti-inflammatory diet, and taking a bunch of anti-inflammatory supplements (Vitamin D, Fish Oil, Co-Q10, etc.).
You are providing a service that is truly needed, and you’re doing it with a great sense of humor and upbeat attitude. High quality people like you deserve to be applauded. Thank you!
-Amanda
I am looking for a organization that will help my wife with her ostomy supplies. She can not afford Medicare or medicade. Iam my witts end watching her suffer by not changing it propely. She’s a 5 time cancer surviar and really needs help.
hi guys i just had my j pouch disconnected i have had ten months of sheer hell,i now have my ileostomy back i have a life back im not stuck on the toilet or soaking in the bath and i have put on weight i can almost eat anything,after a lot of the last nine months in and out of hospital they decided to tell me i had a big floppy dysfunctional j pooch , i did want it to work but it just was not for me,if i had of kept going i would have died i had lost 20kg.
Dennis, I am a nurse currently taking classes to specialize in ostomies. Your videos are WONDERFUL! Thanks.
Hi, My name ie Preston. I watched 3 or 4 of your videos and would like to talk to you. If you could e-mail me your phone number or a e-mail I could e-mail you my phone number I would appreciate it. It’s about documentary that I’m working on.
Thanks,
Preston
Hi guys. Dennis, I have been watching your videos and tonight looked some of them up again after getting into some slight frustration due to j-pouch issues. I had my takedown surgery almost 4 weeks ago. It’s been a challenge with diet, burning/irritation, etc and the internet has not been the biggest help – except for what you’re doing. I just wanted to thank you for providing such a clear & motivational voice on living with a j-pouch and all that entails. You’ve motivated me to be patient and also confident. Thanks so much,
Steve
P.S. – Question for you. Are we able to absorb capsules/pills such as ginkgo biloba or herbs/supplements? There is a lot of talk about chewable multivitamins/etc and I’ve been unable to determine if that includes all types of pills.
Like you, I wasn’t happy with the talk on the forums of living off bananas & peanut butter – if this process has taught me anything it’s that healthy eating is very important and I don’t want to get malnourished just because I want to control output.
Hi Steve,
I’m not 100% sure, but I think by the time pills and supplements get to your colon (or to the end of the intestine, in our cases) that everything should be dissolved. I’m not familiar with supplements, so I’m not sure if there are supplements that are slow dissolving and might causes issues. A quick call to your doctor, or a question during your next meeting, should clear up if pills dissolve fully.
Dennis
Hi Dennis and Nadia. I hope you both are doing well. I just have some questions regarding the jpouch. I had UC for 6 (long) years and just had surgery at the end of July to remove my colon. I had some complications after the surgery and ending up having the takedown surgery at the end of August (1 month sooner than the expected date of Sept). So my questions are: 1. About how long did it take before your stool began to have a little more form? Currently, mine is liquid more often than not. 2. Will I always need to eat foods that thicken the stool? 3. How can I tell if I have pouchitis if my stool is always liquid? I don’t have blood like I did with UC but I do have the extreme bowel noises (like gushing water) the same as I did when my UC was bad (not that it was ever “good” except for the year I was diagnosed). 4. Does taking immodium help with “stretching” the pouch so it can hold more stool?
Thanks for all your videos and very useful informatio, they have helped me out A LOT!!!
Jessica
Hi Jessica,
Thanks for writing. I’m sorry to hear about the complications.
1) I’m not sure if the stool thickness question has a definitive answer. Mine took about 3 or 4 weeks to get thicker, but it’s always been loose for me. Other people I’ve known with J-pouches have really compact stool and never have to take stool thickening medicine.
2) You’ll have to experiment with stool thickening foods. After eating lots of them over the past three years, I’ve come to the conclusion that they don’t do anything for me.
3) I can tell pouchitis by increased frequency, blood in my stool, and leaking at night. When I’m “normal” my frequency is more manageable, there’s no blood, and I can make it through the night without an accident. I can also tell I have pouchitis when imodium stops working for me.
4) I tried for my first year or so to take as little Imodium as possible. I wanted to encourage my pouch to stretch out and hold more stool. The experiment never worked. I still take imodium almost every day. Your pouch will stretch over time: no need to force it yourself. Research has found, unfortunately, that a larger pouch doesn’t always equate to greater holding capacity (that’s why a lot of doctors don’t make S-pouches or W-pouches anymore, which are technically bigger than a J-pouch but don’t really give a person greater holding capacity. Your body still has the urge to go, whether the pouch is full or not).
I hope this helps! Keep watching our videos and asking us questions.
~Dennis
Nadia, if u r still having problems stop eating all
Grains, even rice, and see if you feel better. Give it about 1 month. I had problems with my j pouch until I cut all grains out for good. All grains meaning with and without gluten.
Denis and Nadia: Yours and other ostomates videos on you tube are so cool. You took a very serious issue and put a new spin on it. I especially like Jess Grosmans video from Times Square saying that having an Ostomy is cool. now to the seriousnes of the matter. I am a very healthy person. My family has a history of colon disease with my late grandmother having a perforated colon and my late grandfather having polyps in his colon. With your information and the information from others, I have came to the conclusion that I too want an illiostomy for myself. I want to be able to show those that need the surgery and are hesitent to go through with it, that a person that did not need it went through it. I feel that this is a calling from God to better myself by helping others. I want to become a cool kid just like all of you by getting an ostomy of my very own.
Hi Christy,
Thanks for the compliments. I don’t think you’ve really thought this through or have the proper perspective on colon diseases. Yes, an ostomy is liveable and it doesn’t have to affect life much at all. But it’s not something anybody elects to have. I seriously doubt you will be able to find a decent, reputable surgeon who will give you an ostomy with no need.
The colon isn’t an essential organ, sure, but that doesn’t mean it serves no purpose. Having an ostomy permanently changes your digestive system, and many people have some problems, mild to serious, at some point in life.
You do not want an ostomy, and I think you should go before the Lord in prayer agin. It might be easy to think an ostomy is cool when you don’t really understand what it’s like to live with a bowel disease.
What you are saying trivializes bowel diseases and the many people who watch this vlog facing ostomy surgery would not be encouraged by an outsider coming in and pretending than an ostomy is no big deal.
~Dennis