F.A.Q.
We’ve tried to answer every question that may come up about living with inflammatory bowel disease. And we’ve tried to focus every video on a specific topic to help people find the answers they are looking for quickly. But understandably, it can be very hard to quickly find an answer to simple questions.
Below are the answers to some common questions we are asked by people all over the world. In no way let this F.A.Q. be a hindrance to contacting us! Feel free to contact Dennis or Nadia even if we’ve already answered the question before.
~Dennis and Nadia
Living with Inflammatory Bowel Disease
When were you diagnosed?
Dennis I was diagnosed with ulcerative colitis at age 21, during the summer between my third and fourth year of college.
Nadia I was 16, at the end of my sophomore year in high school. It was not a clear diagnosis.
How long did you live with IBD before surgery?
Dennis I lived with ulcerative colitis for almost a year before I had surgery.
Nadia I continue to live with Crohn’s colitis, but I lived with my diseased colon for 2 years before I had surgery.
What medicines have you taken?
Dennis I started with Asacol for four weeks. Then I switched to prednisone and azathiaprine. I was on azathiaprine for about 4 months. I was on and off prednisone for about 10 months. After I stopped the azathiaprine I was on Remicade for 5 months. I’ve also taken various pain medicines, acid-reducing medicines, and nausea-reducing medicines, but only for temporary periods of time.
Nadia I started with Sulfasalazine and had an allergic reaction so I switched to prednisone and Humira for 9 months. That didn’t work, so I switched to Remicade, which I’ve taken for about 2 years now and continue to take monthly. I take lots of vitamins, weekly Methotrexate injections, acid-reducing medicines, and various others related to other issues.
How sick were you before you decided on surgery?
Dennis I was feeling pretty well up until surgery. I had been in remission for about five months. I stopped the prednisone and it quickly became clear that the Remicade wouldn’t work for me. I went into surgery just as a flare up was starting. I didn’t have much urgency but I was going to the bathroom about 8 times a day.
Nadia I was on the cusp of colon cancer and toxic mega-colon. I was on bed rest for one month before surgery, I could barely move. If I would turn to lay on one side the urgency would hit. I really had no choice left, and surgery was a must.
Living with an Ileostomy
How long did you have an ileostomy?
Dennis Just over six months.
Nadia For the first time four months, then I got a reversal. My J-pouch had chronic pouchitis for the entire time I could use it, so I opted to go back to an ileostomy for a year. In one year, if my J-pouch heals, I will go back to using it; otherwise, I will live with a permanent ileostomy.
What kind of ileostomy did you have?
Dennis I had an end ileostomy for the first three months then a diverting loop ileostomy for the next three months.
Nadia I had a loop ileostomy the first time and have a loop ileostomy again the second time.
Where you on any medicine?
Dennis Following each surgery I was on pain medicine and prednisone for 3 weeks but then nothing.
Nadia Following each surgery, I still take Remicade, Methotrexate, vitamins (for mal-absorption), and antacids.
What brand of supplies did you use?
Dennis I used a Hollister two-piece system. I experimented with Coloplast’s two-piece system but didn’t like it. I never used filtered bags.
Nadia I always use Hollister. I have great success with their products. I have also tried ConvaTec which is very good as well—the only product by ConvaTec that did not work well with me was the low pressure adaptor.
Living with a J-Pouch
How often do you go to the bathroom?
Dennis For the first couple weeks I went to the bathroom 8-12 times during the day and 2-4 times during the night. By the third week my J-pouch was mostly working normal. I currently fluctuate between 5-8 times a day and 0-3 times during the night.
Nadia With my J-pouch, right after the construction surgery, I would go about 10 times a day for the first week, but after that about 6 times a day would be normal. Now, I have an ostomy, so I will update this question after I go back to my J-pouch.
Do you have any pain or urgency?
Dennis I have no pain or urgency when I use my j-pouch. Sometimes I get slight cramps that last for 5-10 seconds but that’s all. When I have high frequency, my skin gets damaged and that hurts, but the J-pouch itself doesn’t hurt.
Nadia I would have a little burning pain, and a lot of butt burn with the frequency. With the pouchitis, I would have a lot of urgency, but now I have an ileostomy, and I am not currently using my J-pouch; therefore, I have no pain or urgency with my J-pouch. I do have some mucus leakage sometimes—mostly when I use the bathroom.
Are you on any medicine?
Dennis I take no IBD medicines. I take Imodium every other day as a stool thickener.
Nadia I still take Remicade, Methotrexate, vitamins (for mal-absorption), and antacids.
Was it hard using your J-pouch in the beginning?
Dennis Nadia Though the frequency and stool consistency matched that of a flare up, there was never any pain or urgency so it wasn’t a hard recovery at all.
Do you have any regrets about the surgery?
Dennis I have no regrets and no complaints about the way my body works. I would do the surgery again, even though it isn’t a perfect solution.
Nadia I have no regrets other than I wish it would have worked the first time. I’m hoping it works the second time.
Surgery Questions
Where did you have your surgery?
Dennis At Mayo Clinic in Rochester, Minnesota.
Nadia At Froedtert Hospital/ Medical College of Wisconsin.
How many surgeries did you have?
Dennis First surgery: Removal of my colon, construction on an end ileostomy.
Second surgery: Removal of my rectum, construction of a J-pouch and a diverting loop ileostomy.
Third surgery: Takedown of the ileostomy to use the J-pouch.
Nadia First surgery: Hand-assisted total proctocolectomy with a loop ileostomy and ileoanal J-Pouch construction. (AKA removal of my colon and rectum, form loop ileostomy, and J-pouch construction-Yea, all in one 10-hour surgery)
Second Surgery: Takedown surgery to use J-pouch.
Third Surgery: Tonsilectomy to remove growth in throat.
Fourth Surgery: Loop ileostomy construction #2.
How long in between each surgery?
Dennis Three months between the first and second surgeries, and three months between the second and third surgeries.
Nadia Four months between the first and second surgeries. Thirteen months between the second and third surgeries. Eight months between the third and fourth surgeries.
How long was the recovery for each surgery?
Dennis I took about five weeks off of work following the first surgery, four weeks off of work following the second surgery, and two weeks off of work following the third surgery. The first recovery was the hardest and each recovery period got easier.
Nadia It took about 6-8 weeks to recover from my first surgery, but I did not get back to my 100% self. It took about three weeks to recover from my second surgery. It took about two weeks to recover from my third surgery. It took about 4-6 weeks to recover from my fourth surgery. The first recovery was the hardest and they kept getting easier.
How was the surgery performed?
Dennis Nadia The surgery was performed laparoscopically, meaning they made a minimum of cuts and used flexible tools and cameras to see. It makes for a quicker recovery and fewer scars.
How big are your scars?
Dennis I have a three inch horizontal scar about five inches below my belly button. I have a small indent above my belly button and a small mark a couple inches to the left of my belly button (those last two are because of the laparoscopic surgery). Where my ileostomy was I have another three inch horizontal scar, just to the right of my belly button.
Nadia I have one bikini line cut that is 5-6 inches horizontally—it’s barely noticeable. I have my ileostomy which will become a scar when I have my takedown in a year. I have two scars that are on my left side that are about an inch each. They inserted the laparoscopic probes into those two scars.
I’ve only been recently diagnosed with UC. The medication that was subscribed doesn’t really help and I’m currently eating the miminum food. The medical aid also doesn’t want to pay for everything. People at work not very considerate either – facing possible job loss at the moment. How do you deal with the emotional part if you’ve never been sick in your live and suddenly at 36 something is now wrong with you?
Dear Dennis, I just found your blog website, I had a colectomy with ileostomy in December 2008 and I am having the J pouch this monday 4-20-09, I have been reading like crazy and am terrified of the surgery since I read you come out of surgery with drainage tubes everywhere. Not to mention the possible complications. Please enlighten me on the post operative drainage tubes…..
Hi Olga,
I’m not sure what other’s experiences are, but this is how it happened with me. I had a drain tube after my j-pouch and after my takedown surgery, for about three days each. It was one plastic tube out of my left side (opposite my ileostomy) with a plastic ball on the end to collect fluid. The nurses emptied and measured the fluid several times a day. It was thin and red, kind of like cherry Kool-Aid. It had one stitch to keep it against my skin. It didn’t hurt or anything. I had to clip it to my clothes when I walked around so it didn’t tug out the stitch.
It only hurt when the doctor pulled it out. He came and cut the stitch then pulled it out in a second. It feels weird to have something pulled from your body but it isn’t traumatizing or anything. Then we put a pad on for the day. The next day I took the pad off and the hole was mostly filled it. I could shower with it open and everything and water didn’t bother it. In a couple weeks it was completely filled in.
Now I still have a tiny red mark on my skin where the drain was but it doesn’t hurt and the skin is smooth.
I hope this helps. Email me if you have any more questions!
Dennis
Am looking for elastuc mens’ pants, other than sweat pants for my brother, who had his colon removed in the past nine months. is there a spoecial product line or web site? Thank you
Hi Dennis, my 11 year old son has had uc for a year and a half and has never responded to medication. He first started on steroids and Imuran and Asacol and has been on Remicade infusions since May of this year and still nothing. We are considering surgery, and he is getting his 3rd colonoscopy this Monday and we are meeting with the surgeon on Thursday. I just found your site and want to thank you for sharing your story, I am still not sure about once the final surgery is done, do you live normally like you did before the disease or do you still have a bag? I am very concerned about going through with the surgery and what the long term effects will be. Thank you so much for all of the information you share with everyone!
Dennis,
I saw your video on swimming with an ileostomy using waterproof tape to prevent water seeping into the bag and to prevent possible waste leaving.
I have a better idea for you and it is quick, easy and no taping is involved.
I went to a sporting goods store and purchased a neoprene waistband. On TV they usually sell them as waist trimming belts. They have velcro for attachment and hold up underwater or in the shower. They are in the $12 to $18 range.
I have been using this method for swimming and showering for years. When I swim I wear a tank top so it covers the neoprene band. This way know one knows I have a ileostomy.
You may use this info to pass on to others on any of your sites that you post to.
Regards,
Dave
Hi Dennis
Thank you so much for sharing your videos and experience….it’s such a masive help.
I am going for a sub total colonectomy next month and I’m scared!!
When the surgery is done and the bag is in situ can you bath with it on or off. Do you still get tummy ache’s if you have bad food or not? So may questions….where to begin.
Do you feel worse or better soon after the surgery with losing the poorly bits?
Thank You so much Dennis your a star. Regards Viki
Hey Dennis,
I’ve been visiting your page off and on and other sites on the web, I was wondering what your opinions were and perhaps others, about having a 1 step takedown versus a 2 or 3 step takedown? I’m considering surgery within the next 2 months. Been living with UC for 5 years. Asacol no longer works, on colozal, canasa supository, and just recently on hydrocortisone enemas, I’ve been off and on prednisone and don’t like it one bit.
Thanks,
James
Hi James,
It sounds like you’ve been through a lot and surgery is a big decision. From my experience and from talking to others, the surgeon seems to have the most control over how many surgeries s/he does, so obviously whatever series of surgeries your surgeon feels comfortable doing takes presence over anything I say next. However, I personally believe that the 2 or 3 step surgeries are far better than the 1 step. The 1 step seems like too much at once, and I know sometimes people have problems because their J-pouch is expected to start working as it is also healing. Sometimes it can break open, even.
I know you skip the ileostomy with a 1 step, but I think the ileostomy stage is very important because you learn how your bowel movements work without your colon. You can see your stool and see the volume of it as it collects in the bag and you can feel the consistency of it. All of these things you can’t do with your J-pouch, since the stool is inside you. It sounds gross, but I think the ileostomy really is a good learning experience to prepare you for a J-pouch. Many people do a 2 step surgery and are fine with that. I did a three step and am glad I did, because we took it nice and slow and didn’t rush things too much, and I think it makes for a healthier J-pouch. But also in my case, I was on so much prednisone that my immune system was compromised and a 2 step process I might not have healed fast enough. So it depends, too, on what medicines you’ve been on.
If you have other questions let me know,
Dennis
hello Dennis,
I have J pouch surgery for a year now but am suffering from pouchitis.
I have taken Cipro and Flagyl antibiotics several times and that has helped me but the pouchitis keeps on coming back after I am off the antibiotics. I have tried probiotics and other home remedies but at this point there is no cure…or is there…I need help big time….
Hi Raihana,
I’m sorry you’re having continued problems with pouchitis. This is something you need to talk to your doctor about. I’m not sure exactly what the options are beyond antibiotics. Some people tell me diets rich in probiotics help them avoid pouchitis very well. I can’t confirm this myself but it might be worth looking into. Some people have chronic pouchitis and they go back to an ileostomy, but I’m not sure if there’s any more things you can do before taking such an extreme measure. If you find something that works well let me know.
Dennis
Hi Dennis,
This is a great web site. Thank you for taking the time to put it together. I was recently diagnosed with UC and for me the fatigue is the worst part. I know caffeine is off limits with UC. I was wondering if there was any methods you tried to combat the fatigue. Thanks.
Hi Adam,
I don’t know any particular methods for fighting fatigue. Same stuff you’ve heard before…try to sleep well, exercise, eat right and try to stay as healthy as you can. Though with UC, when you are in a flare up it is really hard to do any of that stuff. Reasonable perseverance was what I engaged in. After being diagnosed 3 years ago, I’ve had to get up at least once a night, often twice a night or more, to go to the bathroom. And after awhile, I just got used to having my sleep interrupted so frequently. Now I can make it through the day with few issues. As much as possible it’s important to try and stay on some sort of schedule with sleep.
~Dennis
My friend had anorexia for about 3 years. This has resulted in messing up her colon and rectum so much she will need surgery.
She only had this news today so I’ve been searching online for info so I’m up to date as possible.
Thank you so much for all your information you give (I found this via a Youtube video), you courage you have and that you prove that one doesn’t need to be embarrassed or have living with the bag etc destroy your life.
BB,
England
Thanks for sharing this. It’s incredible how many different reasons the colon and intestines can fail. This site is primarily for people with inflammatory bowel disease, but I learn all the time about others who have colon problems because of some other condition. I feel sorry for your friend and hope that she makes it through surgery okay! Let her know about this site and put her in contact with us!
Dennis
Hi Dennis,
I really admire your strength and all the info you have given. I lost my colon to UC back in Oct 09 It was a very trying time but I was finally able to manage the ileostomey, my problem was finding the right appliance that would not blow out, come to find out I needed the convex appliance and never had another problem. I just had the jpouch reconstruction last week. My dr was unable to re do the ileostomy because by small intestine was too short for both. So I have gone right into using my jpouch right away. My problem has been with many frequent stools resulting in severe anel pain, I have tried wet wipes, spraying water on it and patting dry as well as using zinc oxide. Is there anything else you could recommend using? Change my diet or use some other cream perhaps? I really value your opinion and have greatly appreciated all of you advice to date. Please let me know if you can, thanks so much and I am so happy you are doing so well. I can only pray that mine goes as well, April
I just happened to notice that my email was incorrect.
Hi Dennis,
My name is Kye Burns. I was diagnosed with UC 15 years ago, and I am strongly considering to have surgery. I have consultations this month with two surgeons. My question is what key questions you felt were important to ask your surgeon before you had surgery? Level of experience, number of J pouch surgeries, success rate etc… Thank you for the support you have provided those who have UC. Thank you. Kye Burns
Hi Kye,
I’m sorry to hear you are facing surgery and have been suffering with the disease so long. When I talked to my surgeon, I had questions more about the surgery than the surgeon himself. He told me upfront that he performs about a third of the the J-pouch surgeries at Mayo and has done hundreds of them, and that seemed good enough to me. He told me the success rate the hospital has overall and I felt no need to shop further for surgeons. Most people when they face surgery have very little choice about which surgeon they see, considering where they might live geographically.
Dennis
Thank you Dennis for the response. Your right, my main focus is with the surgery and I will have some questions. I will make my decision after my appointments. One is in USC and the other in San Diego where I live. I have tried everything in my power all these years to combat UC, and I will persevere. Thanks.
My mother had UC for over 30 years and recently had her total large colon and rectum removed due to cancer. My question is that she is using Hollister appliance but she keeps having “blow outs” up to 2 times or more a day. Is there a better appliance out there that she can try that doesn’t seen to have as many problems with leakage? She is emptying the appliance every hour to see if that helps with the blow outs but it doesn’t. She has tried the vented appliances but she said the blow outs are much worse. Any suggestions? She is really getting discouraged and I would love to help her get this figured out before her chemo and radiation start in 2 more weeks.
Sorry to hear about your mother’s problems. It’s probably not an issue with Hollister or any other company’s appliances per se: either it has to do with how she’s changing it or perhaps she just has the wrong set up. Trying calling the ostomy company, explain what’s going on, and they should be able to recommend something better. And if possible, see if she can visit with a WOC nurse. They are really helpful in fixing these sorts of problems. Everybody’s body is different so it’s hard to give a definitive answer.
~Dennis
I used the Hollister ones and had similar problems until I got the ‘Adapt barrier rings’ (also by hollister). These things were great, I never had a blow out after that in 4 months and you can keep the same appliance for 5 days or so before changing. Good luck.
I am trying to decide whether to go forward and have J pouch surgery after a year with an ileostomy.
I can’t help noticing a lot of slight down beat writing out there on the net.
Looking for positive stories and outcomes because that’s what I want to find. Not very scientific is it.
You seem quite happy with it Dennis. That’s good.
If you are considering j-pouch surgery – don’t be heavily influenced by what you see on the internet. I had my colon removed when I was 13 due to life-threatening UC, and during the wait-time to get my j-pouch done (it wasn’t even a consideration, it was just a matter of leaving me with an ileostomy until I was well enough to withstand major surgery), I did a lot of research online about j-pouches. All I seemed to come across were negative results. It left me very upset and discouraged. But of course, I wanted the j-pouch anyway, and a year later, it went ahead.
I’ve had a j-pouch now for 10 years. It’s a million times better than an ileostomy. Everything is internal, so you feel and look like a normal person again. Yeah you have to use the bathroom more times a day – but for the most part it’s pain free and you have complete control and continence. Plus there are lots of things you can do to “slow yourself down” – immodium, codeine, probiotics, etc. In my opinion, the j-pouch is the better option if your only alternative is an ileostomy. People who have success with it – which is the majority of people – don’t bother with posting on the internet. Same as anything – bad results get all the press. People with good j-pouches are off living their lives and not posting in forums. My gastroenterologist told me that the statistic is that 95% of people who have the j-pouch surgery are happy that they did so.
Remember – a jpouch surgery can be reversed, if needed. I would go ahead and give it a shot. Odds are, you’ll be happy with it.
NADIA, DO YOU TAKE ADEKS FOR MALABSORBTION?
Good, good website … just what I was looking for. Good luck to both of you and God bless.
Sincerely,
Bob B.
BOB BUTTS
Waterbury, Vermont
I am not sure where to post this but it is very important. The BMJ has just released a new article (embargoed until last Friday) on a very sensative issue that affects ostomates. After extensive studies here at the QE Hospital in Birmingham and Sloan Kettering in NY City, it has been revealed that ageism is playing a role in the aftercare, advice and counselling recieved by ostomates over 50 – it neglects intimacy a a general topic!! To see the full article and our detailed comments and prescriptive solutions please see http://thebowelmovement.co.uk/2011/10/as-the-bmj-reveals-that-ageism-plays-a-part-in-follow-up-consultations-on-intimacy-after-ostomical-surgery/