F.A.Q.
I’ve tried to answer every question that may come up about living with colitis through this vlog. And I’ve tried to focus every video on a specific topic to help people find the answers they are looking for quicker. But understandably, it can be very hard to quickly find an answer to simple questions.
Below are the answers to some common questions I am asked by people all over the world. In no way let this F.A.Q. be a hindrance to contacting me! Feel free to continue asking me questions, even if I’ve already answered the question before.
~Dennis
Living with Colitis
When were you diagnosed with colitis?
I was 21, during the summer between my third and fourth year of college.
How long did you live with colitis?
I lived with colitis for almost a year before I decided to undergo surgery.
What medicines have you taken?
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.
How sick were you before you decided on surgery?
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.
Living with an Ileostomy
How long did you have an ileostomy?
Just over six months.
What kind of ileostomy did you have?
I had an end ileostomy for the first three months then a diverting loop ileostomy for the next three months.
Where you on any medicine?
Following each surgery I was on pain medicine and prednisone for 3 weeks but then nothing.
What brand of supplies did you use?
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.
Living with a J-Pouch
How often do you go to the bathroom?
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 4-6 times a day and 0-2 times during the night.
Do you have any pain or urgency?
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.
Are you on any medicine?
I am medicine-free. Occasionally I take Imodium as a stool thickener, but I am trying to get my j-pouch to regulate itself.
Was it hard using your j-pouch in the beginning?
Though the frequency and stool consistency matched that of colitis, there was never any pain or urgency so it wasn’t a hard recovery at all.
Do you have any regrets about the surgery?
I have no regrets and no complaints about the way my body works. I would do the surgery again.
Surgery Questions
Where did you have your surgery?
At Mayo Clinic in Rochester, Minnesota.
How many surgeries did you have?
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.
How long in between each surgery?
Three months between the first and second and three months between the second and third.
How long was the recovery for each surgery?
I took about 5 weeks off of work following the first surgery, 4 weeks off of work following the second surgery, and 2 weeks off of work following the third surgery. The first recovery was the hardest and they kept getting easier.
How was the surgery performed?
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?
I have a three inch horizontal scar about four 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 3 inch horizontal scar, just to the right of my belly button.
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.