Scott Ellis and Lisa Ellis

Recorded May 7, 2008 Archived May 7, 2008 38:01 minutes
0:00 / 0:00
Id: DDD000032

Description

Scott Ellis is interviewed by his sister Lisa Ellis about living with Colitis and his iliostomy.

Subject Log / Time Code

Colitis iliostomy, ulcerative colitis, symptoms medication, steroids.
SE won the Great Comeback Award. Rolf Benirschke, NFL player who suffered from Crohn’s disease, his career, playing through the illness.
Description of the disease, operation, to create the iliostomy.
Their mother, drill sargeant, Donna Reed, tough Irish personality prevented them from feeling sorry for themselves.

Participants

  • Scott Ellis
  • Lisa Ellis

Venue / Recording Kit

Partnership Type

Fee for Service

Transcript

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00:01 I'm Lisa Ellis. I'm 46 years old. Today is May 7th 2008 and we're at the Enfield public library, and I'm here with my brother Scott.

00:12 My name is Scott Ellis. I'm 36 years old. It's May 7th 2008 at the Enfield public library in Enfield, Connecticut. And I'm with my sister Lisa.

00:23 Can I ask you to come today so that we could have talked a little bit about our history together? Cuz even though there's two other siblings in our family you and I have quite a bit in common. We both have suffered from colitis and we both have iliostomies. Can you tell me a little bit about your illness and

00:41 It's been a blast. I can second that a little fuzzy for me. I don't know if it's just kind of blocking out all the fun times or if it's just really I'm getting that old is around about my ninth birthday 8th night some around about in there than it was originally diagnosed with what's called ulcerative colitis, which is now and one of the in the family of what's called inflammatory bowel disease which encompasses whole bunch of fun stuff. Not really well known in society. Not exactly one of the water cooler conversation kind of stuff in elementary school obviously and it started out with the normal signs and symptoms, you know, the real bad cramping and losing weight and not having any energy and loose stools.

01:41 Unfortunately, you know why you get the blood in the stool and whatnot, which was an indicator and going to Specialists after that, too.

01:51 Determine that that's what it was which started me on a regimen of medicines which at times were just maintenance or non-existent and other times really weird the billeting and great things like prednisone can play Havoc with you about 15 and things got it flared up which I did really well. I was able to pursue Outdoor Sports backpacking camping swimming Varsity swimming in high school and the other flare-up that caused me to spend about two and a half months in St. Francis Hospital in Hartford on the Pediatric Ward on complete bowel rest, which doesn't sound too.

02:43 Too intimidating. But for those that don't know complete bowel rest with mean absolutely nothing other than a few ice chips every other day by mouth during that time. I don't think you were rough didn't want to see anybody didn't want to talk to anybody. I want to know nothing after slicer one of those sodas and by the time 2 months into what that's all I wanted. I would have killed for one of those. I don't know why but that was what was on TV and I could meet with that ended up in what's called an ileostomy the start of about 10 surgeries, which removes the large intestine and the tried to Monkey around and do some stuff and avoid what's the only asked me which is

03:33 The stoma which stone is any kind of thing that's supposed to be inside your body, but they yank out to the surface for a little bit and yell most people know if like tracheal stoma switch for the tracheostomies and now that ended up when I was 19 with when they finished up with everything and kick me out for good and then really haven't been problems really no problems whatsoever a couple years later. I followed suit little bit of a different reason, but I had something bunch of the colon wall and

04:09 Massive infection and really had no choice

04:12 Little bit similar, but it was nice because I had already experienced it so I know a little bit of what to expect but and I know that I've always been pretty open about it, you know not been something.

04:34 You know if the comes up in conversation, I would tell people about it was.

04:39 Something that I didn't really keep hitting too much. So I didn't go out and shout it, you know everybody but I know that up until a couple of years ago, you weren't quite as open about it and would rather not even talk about it too much with me because I know I tell you I was got this they got this new stuff. Why don't you try and he's like no, I'm all set with what I have and with the stuff you've been using for about 20 years. Do you think brought about the change that you know, especially the last two years with a lot of things change for me? I had two things kind of impact my life more than two things, but we really important things that impacted my life that changed my entire perception on just daily living and just everything your first was becoming a parent.

05:37 That obviously really changes your outlook on things that should and second was September 11th and 3rd Capital before that. I was briefly separated from my wife from our last couple months and it just really made me understand and appreciate how important life is and that you know, it's it's not a big deal and there's really there's nothing to be ashamed of and when I shared it with guys working on my group and my fire house which was probably about three years ago. And the only reaction was just one of you know support couple guys were just in a couple the other Mattox on my group or just interested in a medically any issues if I was ever injured of those anything now just like they would be guys that maybe had hypertension guys that had them, you know, I've gone through chemotherapy or something for different cancers.

06:37 I have it there like did you just get it and I'm like nah, I've had it for over 15 years it like you're kidding me, you know, and then also you find out the people that have it that you know of right there's been a couple people that we've been surprised to find out that they also had ostomy you then.

06:53 It's been it since pretty neat with my line of work. It's kind of giving me a little bit more which I didn't realize and kind of a responsibility on my part to can let people know that it doesn't some people would look at it as something that would you know.

07:11 Turn you into a homebody or or Destroyer your life and really doesn't spin on it where to me. I talked to a couple people and I'm like, yeah, it's life-altering. All right. Yeah, you don't have to worry about where the nearest bathroom is. You have to worry about taking any medication. You don't have to let you know there's so many things that you now don't have to worry about that. It's life-altering for the better and I think you've found that out to this year in particular to you had something great happen to you that I'm very proud of you are named the great comeback Award winner. Can you tell us a little bit about what that award was? I know it's been around for a little bit. I didn't really know too much about it until it's been around since 1983 when

08:05 I can I can call him this now and a couple people I can call us now that because of this program guy by the name of Rolf benirschke who was a former New England her up until is probably 10 to 12 birthday. When his dad was a physician move them all out the San Diego. He was a NFL All-Star for the San Diego Chargers and run about his first it was his rookie season. He contracted Crohn's disease, which is what you had one for that. My sister has in them similar to ulcerative colitis just a little bit nastier cuz it can attack more than just a large intestine.

08:52 He contracted that and play two seasons really sick to really amazing Seasons, but he played it really sick and finally on a trip to the Denver Broncos phone number correctly Perforating is bow, which means it's just basically split open because you have been so diseased and it causes all sorts of wonderful attractions was not being able to come back from that and he was wearing actually two at the time ask me appliances on his on his waist and I he was able actually to try out for his position again the following year get it back and went on to at least five more amazing Seasons include, you know all star and Hall of Fame and all-time leading kicker points pointer for the NFL. Just a great great guy. He starts his programme says, you know what I found out

09:52 That so many people would call me when a sports writer would talk about what I had when I'd go to play, you know, wherever and people say, you know, you're the only other person I ever knew that had this and he realized he needed to let people know that there's a lot of people out there that have it let everybody know about each other and came up this program because it was so much Spotlight on him you no coming back from me all these surgeries and almost death to go on to play in the NFL continue in the NFL and then a Hollywood career after that. They started this program and it slowly built it tagged on with a small company the time that was making ostomy appliances is called the

10:34 Computech. That was the original name and they were bought out a few years ago by Bristol-Myers and Squibb and big conglomerate, but they really have bankrolled the whole thing and and done a lot with it. So, dating last year with seeing stuff on the website says I started exploring things. I want to find out about new stuff and whatnot. And I found this website from convatec and they had a little

11:01 Fill in the blank kind of thing for some reward program and I figured well, you know, I feel this thing out. I'll get on there mail unless maybe I'll get a few samples finally got a phone call from this guy Ross about a week and a half later and I have no clue who this guy was but that I was being considered for the Regional Eastern region on a recipient because of which I thought was just me going about my life for all these years. He thought it was pretty important for people to know that a guy can go through all this come out at 19 get his health back compete for a civil service job in the fire service do well in a very competitive market that actually get offered a job go through 16 weeks of recruit School.

11:56 Passed out and then continue on for 14 15 years his career firefighter and meeting and marrying a wonderful lady along the way and having two great kids. So people that make the media to that have asked me if they tend to be people that are older and I don't think people realize that there are people out there that live with these for 20 + 30 years, you know, and I think that's probably give me a couple more on that one. Hoping to make it past 50 you and I really haven't had any problems with her earlier. So do you think that that's the reason why they they picked you to be the national award winner because you're such an example to maybe some kids starting out now with dinner.

12:45 IBS and you know that he was a kid, here's a guy that you know suffered it from since he was nine and it's been able to achieve his dream because

12:54 Well, I guess you're sort of stuck in our family if if you're born into our family got to be a firefighter have something to do with the fire service. So even if some people told me I should look at the traditional College route to maybe a teacher instead cuz it's so physically demanding Young Thug mansion.

13:28 They stood at first either, you know, I just didn't care. I think that's what happens to a lot of people once they get better. They just move on and I just that's exactly what I did. I think one of the reasons one of the huge reasons is the simple fact that they need somebody that

13:51 Is a non-traditional kind of thing in an in a disease that nobody talks about and there's absolutely no real National push to have any kind of awareness which we know when our society we only way to get research money. The only way that any kind of dollars flow to understand or try to find a cure for something is for it to be talked about when I've done some of my speaking the things I was reference is breast cancer awareness 20 years ago. If you talked about breast cancer people to move around in their seat didn't want to discuss it with me and wouldn't talk about it. People didn't do checks sudden. They were huge pushes for awareness from some pretty famous. People are people out there who willing to talk about suffering breast cancer mastectomy and Prosthetics and stuff and all of a sudden it became a huge public issue when it became, okay in our society to talk about it and have awareness days and raised from

14:51 Irritable bowel Evan understand it sometimes um, you know,

15:07 Some insurance companies don't want to cover all the supplies that you need not realizing that. Okay. It's something that you need to survive. There's no choice in it. And I know that you've gone and spoken to the legislature in in Connecticut trying to make them realize that you know, if you have an ileostomy, there's really no choice here Health Care system for next 5 hours and I don't think that's going to work but this suffice to say that they just don't get it Connecticut. We're lucky in Connecticut, the legislator legislative branch a few years ago had enough foresight to at least make a leap from the fact that they passed the administrative law for insurance companies that if you provide and this one was a this was just amazing that no offense to any legislators were listening to this but this was amazing that some of our elected officials could actually make this

16:04 Bleep, but if you're going to provide surgery that results in an ileostomy or colonoscopies colostrum colostomy, then you have to provide the support afterwards which you know for most people would probably be a no-brainer. But then again we're dealing with insurance companies and politicians. So it needed to be a law which I know it probably cost about $800 a month $0.06 is for all the supplies and stuff and depending on How likely is it? You know, it's a catch-22 situation. There are if you are uninsured a lot of these companies will provide discounted there's a nonprofit groups that provide discounted stuffer free supplies.

16:54 And a lot of the focus now is in the developing countries.

16:58 There wasn't a huge demand for a few years ago demographically. We're lucky in the developed Nations that that's where Crohn's and ulcerative colitis seems to land. So I mean, I guess it's a good thing in that at least in developed countries. We have generally somewhat of the the ability to provide for these things where as you know, you look at some of the young male third world Nations, they can barely keep clean water and sanitary facilities. So demographically, it's good that they're not a huge portion of what you know, where this this type of stuff careers.

17:38 You know what? It's just in the awareness is just such a huge issue my friend Rob Hill from British Columbia from Vancouver. Just got taken off of one Camp above base camp at Mount Everest. He was climbing at that was the last of the Seven Summits from to do he has a ileostomy and Crohn's colitis his flare-up. Unfortunately brought on by brought on by altitude sickness in a few other things unfortunately stopped is a scent short, but he'll he'll be coming back and he's the same age as me and he's just he's a little bit crazier. I think you from doing or pursuing or anyting

18:26 Not really that I can think of. There's only one glaring thing. And if anybody in the Pentagon ever happens to listen listen to these tapes or you know old gwf, you're you're tapping into these ones to with you Patriot Act my friend listen to this one. There are tons of people who have ostomies that have gone on to things like me fire fighting police officers state troopers. And in those capacities that have done, you know, amazing things rescue swimmer. Like I am guys that do if you know explosive Ordnance disposal bomb techs. There's only one thing that you're not allowed to do and that's served in the military because the military says well, that's just one of the things that we've had in here for forty years back when off Timmy's were first being performed in the appliances were prehistoric it best. They've never Revisited it.

19:26 Maybe you know, I'm just going out on a limb here. You know, I don't see the huge lines at your recruiting offices anymore. Perhaps maybe you should think about that one, but that's about the only thing good cuz I can't hang.

19:51 What will he hears that hears the dime store tour of the anatomy and physiology of a ileostomy. There's a couple but what would happens is been in my particular case the disease which was ulcerative colitis also rates the lining of the large intestine, which is the last stop before the rectum before things leave your body and what ends up happening in my case is my large intestine kind of lost the war so they had to cut it out completely. I'm using an old Bill Cosby record that I had their eyes. But I don't know the kid wonderful man with his tonsils they lost the war so they had to cut it out. And what they have to do is then they take a bit than end piece of it and they actually bring it out through an opening in nam actually bring it out through an opening in your abdomen and the first time if it's specially if it's emergency you really don't get much.

20:51 Say where it comes out. It's generally around the belly button, maybe 5 6 in off to either side once they make it permanent. If they in fact to make it permanent, they give you a better idea or you can choose where you want it below your belt line where you wear your pants if you're an older guy in Florida, I think it's a little bit higher cuz the pant line tends to be a little bit higher on those shorts, but I can put it off so that they can be in the right spot. That's what you figure should think about a butt and it's about as if you take your knuckle and you make a knuckle like you're going to punch somebody like my wife does when I really get her angry look at that knuckle and that's about the size of what the the protrusion through your skin is and it again it looks just like a mucous membrane, you know, it's yeah, it's usually read that sweet kind of the color you wanted to be that's a good thing and it only protrudes about maybe an inch and 1/2 inch from most people. So what then has to happen,

21:51 As they make what they call appliances or and what happens to your skin and you change it every couple days and there's a collection bag which you know, I I would say she my metrics really stink. I'm I'm guessing maybe 1/4 liter, you know how the size and that is where your bodily wastes are diverted to you empty the same. It's basically it's just a replacement for the the rectum mail and that large intestine. So it just reverse it. And that's how you get rid of the stuff that we all want to get rid of that hard thing to to wait usually and you can pick the time in which makes it nice considering, you know, for 10 years of my life. It was in all the bathroom really ruled.

22:51 And that's the thing is this is a result of usually two different types of things one is the inflammatory bowel disease, which just you know, debilitates people. They have to know every bathroom is cuz it's one of the the definite symptoms of it is urgency and need needing to to move your bowels. And the second is Witcher 2 coming more, because of detection. Thanks to Katie Couric for colon cancer. So that tends to be where they have to cut out parts of the colon and obviously the large intestine that can be a result of it. So having that really again, it's it's more of a psychological thing, you know, the basic of your question was well, how is that going to stop you from doing something and my answer is frankly and I can say that with a lot of assurance really it's not going to but unless you unless you let it and unless you let people tell you it will we were talking before about surgeons and Physicians?

23:50 You're lucky the surgeon that I had is an amazing guy and you know, very positive about stuff didn't he was saying this is this is going to be the best thing that could happen to you right now. There are lots of Surgeons. I talked with people talk with kids their surgeons are telling him. It's going to end their life, you know, they're going to be a shut-in people. They tend to take a look at it is this is a last resort. The last thing you want to do is have this because it's a stigma and I know I would have definitely done that but yeah, dr. Walters was a unbelievable because when I was diagnosed with rectal cancer, he's on his head out of this is nothing we can beat it and that's the attitude I had and I'm almost five years out, but I think that we've been very fortunate with all the the Physicians that we've had. There's a lot of fortunately as I've gotten more active with advocacy groups throughout the state and then this was great.

24:50 Comeback switches International talking with friends people all over the world. That's not always the case. A lot of people out of Surgeons a lot of healthcare professionals project. I think their own misunderstandings are stigmas about it on to these people in and kind of give him a negative attitude about it, even before it occurs or tell them, you know, this is the worst thing that could happen if the last resort don't do it and what ends up happening is the baby comes so horribly sick that it tends to be radical surgery at that point. It takes them so long to get healthy after it because of things like peritonitis and new infections and you know that they lose incredible amount of weight.

25:33 Unfortunately it be you don't take any medications for that. I mean nothing, you know, I take it for high blood pressure, but nothing because of the ileostomy or anything, which is nice because if you have Crohn's or colitis ulcerative colitis, there's so much medication that you're on and you have to watch what you eat and we know we should watch a little bit of some of the stuff that we shouldn't eat. But you know, it's not like what it was. What would you guys have a good sense of humor and relative Health in terms of activity to let me know as your parents taught you to bounce back from something that could be really debilitating.

26:16 I'm not I think some of its family. I think a lot of it was friends. I had in a very close family to me to Caruso's then we're like a second family and you know my parents and every it was I don't think we've ever had a defeatist attitude and I don't think my parents ever let us use it as an excuse either in the you know, we grew up in a three-bedroom ranch with one bathroom. So try to figure that out with two people with colitis there for a while that was you know, I never allowed us to use it as an as an excuse to request and I was 25 when I had my surgery, so I was out of the house, but I know they were still I went through sophomore Junior and Senior year with Deo in that course of time 8 of the 10 surgeries, and I never I didn't stay back I didn't

27:13 I think you know why I probably would have done maybe a little bit better and especially my jio of my sophomore year not being out for half a year, but I went through and did well and I attributed lot of that. Again Neil like said to my parents tonight my siblings and you're my mom is she so you just it's her way, you know, and so just choose a little mix of I don't know if you ever watched full metal jacket that Marie with arly Ermey the drill sergeant little bit of him little bit of Donna Reed and I'll throw in a couple others in there could be very nurturing very caring very loving but also there was no BS going on either, you know, if you know it in the thing is is having that there were you know, there was no thought of this is going to I'm not going to pour some of the garage right on time because she wouldn't have allowed anything else.

28:13 And it wasn't one of these where you're just going to do it there was obviously the support and caring and all the other stuff just you're not going to use it as a crutch and I was out for half a semester and that's that's where having the senior drill instructor kind of thing. You know, you were not going to knock it, but you were supposed to get in a teacher's some of the administrators. I know try to tap dance around the few things in the I wasn't happening.

28:48 You know, I can always carry, you know extras around cuz you never know when you're going to need to change it and stuff. But I think I don't know if it was one of my nephews Derek. I'll just a short time ago said to me. So I said something about having an ass to me cuz you know, I forgot all about that, you know, and that's a great thing and you know, there are funny moments that come up. I don't know I used to dispatch the police and fire department in a very small room and you know people eat people have been on normal functions and something would happen and I'm like, you know what it's not me because I can't do that, you know, so you know that you can make my poor daughter. I'm home because with my schedule the fireman I do a lot of mutual is our exchanges of shifts so I can be home during the day during the week. My wife works full-time a be home with the kids and that meant you no potty training and all the normal things that most people would associate with the mom duties. I was very lucky to be able to do

29:49 My son wasn't a huge issue. You know, there's a lot of obviously a lot of a similar Plumbing going on there and you know, it was easy to do my poor daughter was confused enough when we going to the bathroom and tolls or Stop & Shop or whatever and she first one is know why she couldn't use that cool toilet that you know only had a call back to it the little mint in the center, but we explain that and then she wanted to know what in God's name was that thing. That was very nice. She she already didn't have something that Dad had and then there was another thing to it in a little pouch hanging off think she felt cheated for a while, but she she realizes it's Daddy's Boo Boo and now that's that's just the way it is and you know, what if my three and nine year old could care less. Why do I care my one niece and it wasn't too long ago. She said to me to know that you poop just the same way as my daddy does and I'm like, yeah, we do, you know, so, you know, I think if they can like I said if they can be

30:49 It's not a big deal. And again, it's it's your attitude towards it as you go through life. I think to I've had you know unique exposure to my job to a giant cross section of demographic old, you know, social ethnic backgrounds that I have the honor and privilege to protect and you know, I I I come home from work and I started in the city while I manic which is to put it in reference for anybody from outside of Connecticut. It's not too far from our Indian casinos. And I think everybody can understand that but it's kind of a really beat down City. It's taking its lumps and working there and now where I am in the downtown area of our our community I got no problems. I have absolutely no problems. You know, I have a home I have food everyday. I have a job. I can go to my kids are healthy, you know, this is not even a bump.

31:49 Speed bump on the road of life. There are people that have problems and that reminds me everyday at me now with you no friends of mine that are serving overseas.

31:59 You know people that are coming home.

32:02 You know from our endeavors against the worldwide terrorism, you know, I don't have problems 343 of my brothers that you know, they don't get to come home anymore after 9/11. I don't know problems. I got no problems. What advice or what would you think that somebody who's facing ask me surgery should know first find out everything you can about it. You know this great websites CCF. Ma. Org, you know what I'll just leave these are things that are dated to this this time for anyone were recording this information, but find out the most you can about it be your own patient advocate.

32:51 Don't you know in with any of it? Don't take anybody else's word for stuff. You know what learn about yourself understanding yourself definitely talk to people your own age that are for that meeting for the end. It was there was some people there just that most of them are older and you know, they're obviously going through different issues. Even you and I was with 10 years of age between us what you know, you were dealing with what I was dealing with is different. So it is you're right. It is important talk to somebody who who has it. That's your own age and how you need to understand what's going to affect you in or not going to affect you and talk to somebody that you can actually you know,

33:36 And I'll fill yourself with somebody you understand what they're going through and they can understand what you are. I mean, you know, if you're a you know concert pianist don't go talk to a construction worker has one I would talk to somebody in the Arts who has one and you know, you can if for no other reason you're here you have something in common how to live with it. I mean, I know we both come up with shortcut, you know, they told me to wear the pouch down my leg and I'm like, yeah, I know I don't think that's going to work, you know, so you can come up with different ways and I think that that's what I mean. That's where I have you know, where the people that I talked to Rolf who's a NFL quarterback NFL kicker, you know, very physically demanding, you know.

34:22 You know, I'm Rob Hill, you know who is a mountain climber my buddy Tom from Lancashire England who took a firefighter career firefighter. They are, you know, we all have stuff in common. We can talk about things that are specific to what you know what we encountered than that and that's supportive for us.

34:42 I just want you to know to Scott that I'm proud of you and we came and then we've had our differences at times and I don't always see eye-to-eye, but I'm right so, you know, what's going to happen with that you have learned to to sometimes agree to disagree but I think with this thing come it's great because we've been able to bounce a couple things off each other in the slushy lately share things and realize it myself but you know, there's a there is to know some things that just by talking about it. It's going to do a lot of good so

35:26 And it makes me feel better too. And it sits with everything else knowing I always prove to myself I could do anything I wanted and I proved that to myself and then to the rest of the world, but I think I needed also to prove to myself or prove that.

35:43 To myself that no one else are most people decent people could care less and that I've had affirmed. I mean it's a firehouse that I work in. So we're all about seven eight years old maturity level of the comments the comments fly and it's it's all out of you know, it's it's all out of mutual respect and admiration. You know, I mean, I call a guy who's at bypass surgery, you know, bypass bobber Tommy two valves. We had a pig valve put in its own that because we hate the guy that's cuz we love him so well for the movie with what was his name Will Smith Bagger Vance so that got to fix to me by bypass valve bypass Bob and that kind of stuck but the volume we just have a good time and you know, the fact that it was it was very healthy to be able to two.

36:42 Bei I guess reveal saw something that was very personal to me to a group of people like that outside of my obviously my immediate family because when you have people that even if you have major disagreements with two minutes later, you know, that's the person that's going to keep you from going through a roof or go through the roof with you down to the basement meal people that and we got a daily basis risk our lives for and with each other. You know, what is it reaffirms the fact that you know, like I said, it's it's not a big deal is way too short absolutely certainly something like this. Is that something you can absolutely live with and I wouldn't be living without it. We always have choices in life. It's just can't you know, it's like one of those civil service exams, you know, there's four right answers. But which one's the best in I had a couple choices and there definitely was one that was the best and that was the one to

37:42 Continue living cell

37:45 Right decision, I think so. I'm glad you were first a little bit ago.

37:53 I want to tell you that I love you and thanks for doing this and being the best brother. Thank you.