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19 replies

College and a JPouch

Mhg26Mhg26Member
Hey all it's been a while, but I thought I'd drop by the site again since it's one of the only places where I feel comfortable talking about life with a JPouch.

So I had my takedown in May 2012 and now I guess I'm doing pretty well. I was lucky enough to not have too many issues with the JPouch after a short adjustment period. Well to completely honest, it's hard to think that life itself after receiving a JPouch consists of only a small adjustment. In truth, it has been and will always be an incredibly large adjustment. Anyway, I have returned back to college in DC for the Fall semester of my junior year. For the past 12 months, whether I laid in a hospital bed or my own, I kept telling myself that this was where I belonged. I thought that coming back to college and getting my life back on track was what would make me happy again. While it has and still does make me feel a bit better, the sad truth of the matter is that I am not so happy.

I realized over the past few days and nights that although I'm technically "back on track" with my life plans, I'm absolutely terrified about it! Its starting to hit me that I'm really on my own again. It's so hard to think that after 18 months of depending on my parents and brother for everything, I'm really alone again. I have so many emotions exploding throughout my head about my past hardship, my present situation, and my uncertain future. I'm appreciative of my new life, but sometimes it's so frustrating dealing with a JPouch. I'm sure most of you can imagine how hard it is being a college student and having a JPouch. It's hard enough as a student with weekly classes, labs, homework, and papers. Add a JPouch to that equation and it becomes exceedingly overwhelming.

I've only been away from home for 1 week yet it feels like 1 month already. I should be studying organic chemistry or genetics, but all I can really think about is the question how can I possibly be independent, successful, and happy living the rest of my life with a handicap? Yes i said handicap. Normal people look at us Jpouchers or even IBDers and usually can't tell anything is wrong or different about us. But you and I both know that there is quite a lot that IS different about us. The average person doesn't need to be consciously and subconsciously thinking about where the bathroom is at all times. We pouchers and IBDers do. The average person doesn't need to worry about what to eat for breakfast, lunch, and dinner. We pouchers and IDBers do. The list could go on and on, but I don't need to remind you of that. The point is that we ARE different and that living with a JPouch and or IBD is no easy feat.

Being around so many enthusiastic and healthy young adults and teenagers is taking its toll on my psyche. In one week, I've managed to embarrass myself or make it awkward multiple times by telling other students that I just met that I have no colon. I'm beginning to think nobody my age and in school will truly understand. I'm worried that I won't make any more friends in college and also that I won't be able to go out and enjoy my 20's. I can't imagine any member of the opposite sex that would be attracted to me now. And most of all, I'm confused about my life. Before I got sick, I had a plan. I knew that I wanted to become a doctor and help others. I had tremendous drive and mental fortitude. Now, all I do is flip flop the thoughts in my head. I'm not so sure that I have what it takes to still become a doctor and achieve my goals. I have little self confidence and low self esteem. I guess my main point is- I'm terrified about my future. I wonder whether I'll be able to endure the rigors and demands of 2 more years of college along with an additional 4 years in medical school, 2-5 years of residency, and possibly a post-residency fellowship. I wonder where I'll be living and if I'll have a support group of friends or coworkers to lean on in times of need. I wonder about my stress levels and whether they might induce problems with my JPouch at any time in the future. I can't help but wonder about all these things, and whether or not I might just be better off finding some other type of career that is less stressful and that I can still enjoy doing while being comfortable. With so many uncertainties there are only a few things in my life that are certain: I miss my parents, my twin brother, my dog, and above all- my old life.

If you're still reading this I thank you for taking the time to read and listen to my rant. I appreciate it very much, and I'm open to any and all comments or advice.
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K ke353Member
I understand how you feel. I decided to come back home and go to school locally (even before surgery) but at some point I'll have to leave and I worry about taking care of myself. When we are sick and recovering from surgery, we rely so much on other people to take care of us. It's kind of weird to have to take care of yourself now. It's nice, but I don't feel confident I can sometimes. Honestly though, I felt they way you do about being away from home when I went away to college and I wasn't sick then! It's "normal" stuff we all have to adjust to.

You just have to stop thinking of yourself as a sick person or a person with different insides. It's much easier said than done because I'm still struggling! But you're still you. You probably think about things you didn't used to, but there's always things to think about and everyone has something. I was planning on going into nursing but I've wondered if my body could handle it (who knows what could go wrong...UC-related or not) but during all my time at the hospital, I've met nurses with UC and other chronic illnesses. I know a nurse with Crohn's and an ostomy. My surgeon actually had cancer. Doctors get sick too! If that's what you want to do, don't let it stop you. You know what it's like to be a patient so you would be a great doctor.
CTBarristerCTBarristerMember
quote:
You just have to stop thinking of yourself as a sick person or a person with different insides.


I agree with this. If you let it define you, then that is what people will think of you. "Oh yeah, the sick guy who has no colon." Is that how you want people referring to you?

I had UC when I was a college student at the University of Connecticut in the 1980s, and did not have my colectomy and J Pouch until 1992, right after I graduated law school. I had a "medical single" (single room with no roommate due to illness) and right across the dorm hall from the bathroom. I had some of the same feelings and concerns then as you guys do now. But I went on to graduate with honors, went to law school, made law review, and I am now 3 for 3 on bar exams and a practicing attorney for 20 years.

You have to define yourself a little differently. I don't buy the handicapped label. You are just someone who is a little different, just like someone who has diabetes is different, just like someone who has asthma is different. A J Pouch is not a roadblock to having a normal, successful, and happy life.
Mhg26Mhg26Member
Ke353 thanks for your input! I agree it's just a weird feeling to be thrown back into independent life. I'm managing okay, but I still have my doubts and fears. Also I had such a great support group at home so it's going to take some time for me to really get used to living on my own again and actually being happy with it.

It definitely is not easy to think of myself as normal but I know what you mean. And I'm glad to hear that you're still considering the nursing- it gives me hope and reassurance that my decision to continue on the Pre-medical path is still the right one. Thank you so much for saying that I would be a great doctor. It's funny I thought I was the only one who could see the connection between being a patient for so long and being a great doctor. I agree with you on that and it's a huge reason why I think I will be a good doctor. After all I've gone through, I still tell myself that there are so many others that aren't as fortunate as myself and that's why I want to still help others who are sick and in need.
Mhg26Mhg26Member
DJBHusky- thank you as well for the advice. You have a great point there! I guess I do need to just work on how I define myself. Wow your story gives me so much hope, and I'm really happy to hear that you have been successful in your life so far- even while battling UC. And I can't imagine what it must have been like to go to college in the 80s while living with UC! My hat goes off to you man. Thanks again for the advice it is much appreciated.
K ke353Member
quote:
Thank you so much for saying that I would be a great doctor. It's funny I thought I was the only one who could see the connection between being a patient for so long and being a great doctor. I agree with you on that and it's a huge reason why I think I will be a good doctor. After all I've gone through, I still tell myself that there are so many others that aren't as fortunate as myself and that's why I want to still help others who are sick and in need.


You're welcome! The best nurses I had were the ones who had been hospitalized before for whatever reason. They realize you don't want to be nagged, woken up all the time, or trapped in a room so they they'll walk or talk with you. I guess it's sad that I'm so grateful for my wonderful doctors because I think that should be standard! There are some people who I have to wonder how they got into the medical field.
Mhg26Mhg26Member
Ke353, True I definitely believe that! Pople that have been very ill before can just relate so much better to others who are ill. It's like an unwritten code or something. But I agree- I can't imagine how some the doctors I've met ever got into medicine or treating others. I was lucky to have a great surgeon and I'm thankful for it all the time.
LG little greenyMember
I know I'm posting a little late but i'm wondering if you've contacted the disabilities office at your school. Often they can provide accommodations for you (which sometimes can be as simple as more time during your three hour exams so you can go to the bathroom without missing exam time). Complementary alternative medicine has also been proven effective for stress reduction. I often found exercise and yoga helpful when completing my schooling to avoid the stress and anxiety.
S SimpleXMember
Also posting a little late.

Our situations sound eerily similar for the most part. I got the news that my colon had to come out during winter break of my freshman year. I did not return for my second semester due to the surgery; it was the hardest thing i have ever had to go through.

After takedown my life was absolutely miserable for a while. When things finally started to settle down, I enjoyed a good summer with my friends back home-always knowing I could go back home to my home and bathroom.

I have now started the fall semester of my Sophomore year 7 hours away from home. I'm not going to lie-so far, I have been EXTREMELY blessed. Things have been much different and I have been more cautious, but I've been doing very very well here. Imodium, Pepto Bismol, and Metamucil Wafers are my best friends. The metamucil wafers have made a huge difference and I recommend them highly.

I also have found social life hard. Drinking beer is especially hard for me, and going out for hours without a bathroom can get stressful. For me, the hardest part has been being on a different mental level from my peers now. With what I went through.. I don't think or act like my peers anymore. I'm more somber, quiet, and reserved because of what i've been through. It's not a bad thing, but on a college campus it can be.

Like I said, i've been blessed so far. Things have been going great in college and i pray they continue to. If you're not eating metamucil wafers, give them a try.

Hang in there. Try taking things one day at a time instead of worrying about the big picture.

As Alan Watt's would say, the point of a song is not to get to the end. The point of a dance is not to arrive somewhere, you just dance.

Life is a musical thing, and you're supposed to sing and dance while the music is being played. Don't worry about your end-game right now. Just try and enjoy the blessings of each day.

Things have a way of working themselves out.
suebearsuebearMember
You're still fairly early in recovery and with time your feelings of being disabled might fade away. The first year is difficult; there is much for your pouch to learn, and predictability comes with time. I have never considered myself disabled, in the early days I considered myself in a long recovery. Most of the time I don't think of myself as being any different than the next person.

Do go see the Office of Students with Disabilities on your campus. They will provide you with a wealth of support to help make your college life easier.

Sue Big Grin
D DanielGMember
Hey,
I have just started university 5 weeks ago and have had my pouch formation surgery but not takedown yet. I get what you're saying about the psychological block but can't understand why you tell people so early in your relationship with them.. Take a **** load of Imodium and go get wasted with everyone else, members of the opposite sex don't know about it so go chat them up as if you were "normal". I'm at university and loving it and as far as I'm concerned it's only going to get better after takedown.
Mhg26Mhg26Member
Wow this is a late response but thank you all for your advice and positive words. I am definitely doing a little better by now. I'm still continuing to adapt to my JPouch and I'm learning day by day about what my body can and can't do. My mental state has also improved as I've gotten used to living by myself again.
On another positive note, in regards to returning to the college academic level-I feel smarter than ever. I was worried that my initial lack of focus would disrupt my studies and cause me to perform poorer than I used to perform in my classes before I ever got sick. However, while occasionally my focus strays, for the most part, I've been doing very well in all of my classes. And most of my classes are very difficult subjects like organic chemistry, advanced molecular biology, and genetics. I'm starting to think that maybe I still can and should make the necessary sacrifices, apply for medical school, and use my intelligence and will to succeed to help others in need. The only few things stopping me are the facts that although I seem to be fit for a career in either scientific research or medicine, I'm just not so happy anymore living each day with my face in a book. Ive been working so hard and putting all of my time into my studies that all the stress, poor nights of sleep, and lack of a social life is starting to take its toll on me both mentally and physically.

I wake up each morning and I really wonder if the scientific field is truly where I belong, or where my heart lies. While I do love science, most days I tell myself that while I'm good at it, I don't think I'd be happy with a scientific career.

Now where the JPouch comes in: I still have those days where I just do not feel like sitting in the bathroom 7-8 times. The pouch has mainly been good, aside from a few bad days with some butt burn and occasional aches and pains etc. Yet, the conscious and subconscious bathroom thoughts still linger and will not seem to dissipate. I find myself surfing the web in the traces of free time that I have and gazing at magnificent pictures of exotic destinations and beautiful places in the world. My eyes begin to drip like the rivers and waterfalls that I gaze upon in the exotic pictures. And the depressing and somber thoughts come into my head. Unfortunately, I agree with the thoughts, and I tell myself that I probably will never be comfortable traveling to these exotic destinations or be able to actually lay my eyes upon many of these beautiful sites. If you ask why, the answer is obvious; my JPouch, I just don't see myself taking a day long adventure through mountains, trekking jungles,or watching the sun set on a remote tropical island with my feet in the sand. I don't see myself travelling hours on hours to remote areas and spending the night under the stars with someone special. There are so many things like these on my bucket list, and because of my new body, I just can't lie to myself. I don't know if I'll ever be able to honestly accept certain facts about the new me or that my JPouch is a lot of who I am now.

I'm still worried about the future, as you all can see- if you're still reading. I worry daily about meeting the right woman who will accept these things about me. I worry about my health, my career, and whether I'll be able to be sufficient on my own since I did just turn 22 a few days ago. I'm not getting any younger. Most of all, I worry about my happiness, because when it comes down to it, the person who needs to feel good about waking up every day and living is no one else but myself.

Sorry for my continued rant and stress laden response. I thank you few people who took the time out of your own busy lives to read this and look forward to posting again.
L LCMember
Hi Mhg26,

I totally understand where you are coming from. I had my surgeries in middle school and high school and started college early because my high school didn't like how much I was absent. I lived at home during undergrad because of my medical problems and had to make a lot of sacrifices socially to do well in my classes and stay healthy. I learned very fast that my pouch doesn't handle lots of drinking and staying up cramming for exams. On the bright side, if you are disciplined with your health and coursework you will be WAY ahead of your peers when you hit medical school or graduate school. If you are worried about medical school and surviving the long hours, have you thought about research? It also takes long hours but those hours are very flexible. I hate hospitals so I decided against an MD and I am working on my PhD.

Also there is no reason you can't travel. I love traveling and hiking. Sure the pouch is an added stress during travel especially in places where its hard to ask for a bathroom but hiking is great! If there aren't a lot of people around, you can go where ever you like with a great view! Just remember to carry TP, a bag for dirty paper, and some hand sanitizer. Also if you are in the jungle check for snakes. I spent a month in Costa Rica without any problems.
LG little greenyMember
Firstly, I think everyone has those moments where school seems too daunting to continue, both with a pouch a without. I found that stress played a HUGE factor in making my symptoms worse and increasing my trips to the bathroom. I also remember feeling like I was either studying or in the bathroom. My advice is to keep your head up, don't give up your dreams and remember to take some time to do something you love every day (even if it's just for an hour). Keep your goals small and manageable so you can feel success more often. Doing grad school, law school, med school or any other professional degree is not out of reach just because you have a j pouch.

Secondly, you WILL find someone who loves you for who you are, you just have to learn to love yourself (pouch and all) and recognize that you do deserve to be loved. When you are feel that you are losing hope take some time to ask yourself why you are feeling that way. Sometimes all it takes is changing your frame of reference.

I feel like my experience with being sick/hospitalized has made me provide a higher level of care to my patients. I know what it feels like to be at the other side of the hospital bed and how they are feeling.

It may seem like a long road now, but it goes by fast. Recovery is slow and you will continue to see improvements even years after your surgery as you habituate and develop coping strategies.
If you have any questions at all feel free to message me. I was in your shoes not too long ago.
CTBarristerCTBarristerMember
quote:
you just have to learn to love yourself (pouch and all) and recognize that you do deserve to be loved


Yes, I agree. From his posts I think MHG26 has some self esteem issues he is working through or needs to work through. It's not uncommon for someone young and learning to deal with health related issues. It may take time and maturation but eventually there will be a realization that this is not a handicap and it does not make one different than anyone else or incapable of traveling or having relationships.

As far as graduate school I went to law school, made law review and then passed the Connecticut and New York bar exams on the first shot - all during my last 3 years with deteriorating UC, culminating in J Pouch surgery in 1992. Basically once you are in graduate school you will find out quickly whether you are cut out for it or not. There is a certain threshold level of intelligence, and of commitment, that is needed to succeed.
Last edited by CTBarrister
Mhg26Mhg26Member
Thank you CT Barrister, Little Greeny, and LC for your kind words and truly inspiring advice. I agree with the most of what each of you had to say- especially the fact that I do deserve love and a happy, fun life like anyone else. While I know that we pouchers aren't really all that different from others, I can't help but take pride in myself in knowing that we are different, and that it's that difference that truly makes us stronger than most people. It sounds like all 3 of you have had some very tough mountains to climb at some point in your lives, metaphorically and maybe literally for some of you. I don't know about you guys, but one thing is for damned sure: when I finish my finals in the next 3 weeks and get the best grades I've ever had for a college semester while also taking the hardest classes I've ever had, I certainly will feel like I am truly a warrior and an incredibly driven individual who has what it takes to do anything. I think that coming back to college for my toughest year (3rd) and doing better than I ever have before after everything that I went through, with the dramatic lifestyle changes I have endured, is a testament to what kind of person I am in life. If that doesn't show any medical school in the entire country or even future employer that I am fit for whatever I am applying for, I don't know anyone who really is. Boom! Lol

I'm 110% positive that I definitely have the intelligence level to go to medical or graduate school. I also know that I now have a sense of empathy for others that has become like a sixth sense for me. I find enjoyment in relating to any and everyone, giving people who look like they need a smile a smile, just being genuinely friendly and thankful for the new life I have. Although I flip flop with my emotions more than usual these days, it's also understandable I guess while I'm still learning to acclimatize to the new me.

LC- I know where you're coming from also lol. But wow- to have to go through something like UC and these surgeries in middle school must have truly been a pain in the ass, pun intended. Your really must have some amazing will power and drive to get through high school with a JPouch. I know how dumb and immature high school kids can be. I give a lot of credit to you for hanging in there for so long and now working on your PhD! Congrats on that- and what are you working on exactly? Im still thinking about it, although I'm just not sure I'm cut out for a career in research. Also awesome to hear about the month in Costa Rica! Glad to see a fellow poucher doing well- it gives me hope.

Greeny- I completely agree with you on the crazy amounts of stress and having those iffy moments. Thanks for the advice, and I do believe that while challenging, this JPouch is just something to accept in my life and learn as much about as I live day to day. Wow it's great to hear you say that about your patients. I honestly feel the same way which is why I think I would make a very good doctor. I wish every doctor out there really knew what it felt like to be opened up in surgery or to be sick in bed, unable to do the simplest things for at least a short time in their lives. Although its probably a horrible wish, I think it would give most of them a taste of their own medicine, literally lol.

CTBarrister-- I definitely have some self esteem issues that I'm working on now. And yes it lies solely on the fact that I've gone through a rapid transformation in the past 20 months and it's just still relatively early on in the full recovery. When I say full recovery, I mean not only physically recovering from the surgeries and acclimatizing to the JPouch, but also mentally getting back my confidence and constructive thinking.

Thank you all again for your responses. This site really is one of the most helpful sites I've ever seen. There are so many acts of altruism and true kindness that it really makes me believe that there are a lot of amazing and caring people out there.
L LCMember
I am still early in my program (I did a MS too and worked) but I am planning on focusing on immune development. I did vaccine research for a year but I want to graduate in 5 years so that's out for a thesis Big Grin Feel free to PM me if you have questions about grad schools in the DC area. I also have experience with NIH and FDA programs.

Also, I totally understand the blurting out "Hi, I don't have a colon!". I was that way at first and I think I was a bit hysterical. Now I only tell close colleagues, select professors (nothing gets them off your back about missing class like "sooo, I have a medical condition and don't have a colon and I can get a medical disability letter if you want to be an ass about it"), and researchers I want to work under. My husband was really amused when I first told him (back when we were just friends) and read up on it. Turns out his IBS is much more severe than my pouch problems. It's worked out though. We both know the best bathrooms on campus and we agreed to pay a fortune for a 2 bathroom apartment Big Grin
Mhg26Mhg26Member
That's cool sounds like you also have some good experience under your belt. How long did your Masters take you? I'm thinking I may end up just doing something like that but we'll see. I'm still confused about things. And that's great about your husband understanding- but sucks that he has to deal with the IBS. I'm he sure definitely knows how we feel and vice versa. I'm glad its working out for you though.

I really hope I can get my confidence back soon so I can attempt to meet new women. It sucks since I've always been pretty shy around the opposite sex and don't exactly consider myself the best looking guy. Now its just much worse because of the JPouch and spending a good amount of time in the bathroom. It's so hard these days to really attract someone to you with so many other more attractive and healthier men walking around campus. It's frustrating, I know I have a lot to offer and some good life experience to share with someone special. I just want to have that amazing feeling of getting to really know someone, holding hands, cuddling, and sharing memories together. The happiest I've ever been was when I was in high school, and I had such an a amazing girlfriend for several years. We really had something special, but I graduated and we both have gone our separate ways. I want more than anything to have that feeling again with someone new, yet I just don't see that happening for me anytime soon. Frowner

Any tips that you (or anyone reading this) have for meeting new people, having a productive relationship, or dating while having a JPouch?
L LCMember
My MS took 2 years. I liked it because it because it gave me a taste of grad school, got me a great fellowship, and both got me into my super competitive PhD program. The bad part is that it costs a small fortune. Masters degrees aren't typically funded by the NIH so you have to get loans. I went to an affordable in-state school for undergrad so my parents paid for my first year, and I used my college savings plan to pay for the second year (reduced tuition). I did my masters at Hopkins. If you want time off and some experience I would look for NIH IRTA fellowships especially since you are already in the DC area. They are meant for post-baccs who want experience to get into med school or a PhD program and you get paid (not very much for the area but OK) and have health insurance (super great!). I was obsessed with student health insurance plans when I was looking at PhD programs and the NIH has the best.

I can't tell you much about relationships. I met my husband in grad school, we were friends for 7 months, and then he asked me out. I had already complained to him about my health problems and I knew about his. I haven't dated anyone else. I turned guys down in undergrad because I didn't want to put in the effort and I was nervous about what they would think. Turns out, for my husband at least, he could care less about all my scars (mine are really big because I had a perforation).
Mhg26Mhg26Member
LC that sounds nice- also like you really knew what you wanted to do which is always a good thing. I'm still pretty unsure about which path I want to take but I guess I still have some time to figure it out. Plus, after going through hell last year and everything that led to the JPouch, recoveries, etc, I think I really want to take some time off after I graduate to just do some fun things for myself.

I had a little time this past summer after my takedown to relax but it was also a summer in which I couldn't really do too much as I wanted to take it easy and learn how to get used to the new system. Also, it seemed like as soon as I really got back to full strength, it was time to head right back to college and return to studying hard again. I guess I feel like I honestly didn't get much of a break for myself and just really need to do some fun things that Ive always dreamt about doing- like becoming a ski bum for a season and living in the west or traveling etc.

And that's awesome that you went to Hopkins- such a tough school to get into you must be pretty darn smart then. I feel the same way about the health insurance thing- I like to feel like I'm covered completely, especially after going through the UC , ugh. Also lucky to find someone who could relate to you and accept you for who you are. Scars are just scars and really not too big of a deal, although I do know how you feel. Im nervous for next summer and potentially going to the beach or any future swimming events with new people, but I guess it's only normal to feel that way. I'm so glad to hear its working out though with you and your husband. I feel like young adults these days are just very shallow about dating and even in choosing who they want to talk to and meet. Unfortunately, I seem to constantly think of myself as one of those people who these members of the opposite sex have no interest in meeting or talking to. I say that only because I usually don't have very much luck with dating or meeting new women (even before I was sick). It's not like I think I'm ugly or anything. I just don't think I'm more than average in the looks department, and I know that the low confidence levels don't exactly help my cause either. Frowner

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