Hi! In January of 2015, I was diagnosed with an autoimmune disease called Ulcerative Colitis (you may be more familiar with the "big sister" of UC called Crohn's Disease). The disease attacks my colon (aka large intestine) and rectum, making eating anything ultimately a painful experience and going to the bathroom (for #2) all of the time inevitable. Note that there is no cure for these diseases and only remedies to try and put people into remission.

For a while, I was managing the symptoms of the disease with certain pills but in October of 2015, I got into a really bad "flare" (i.e. disease becomes extremely active) and had to switch medications. Ever since then, I tried new medications to try and control the disease but nothing really helped.

I was admitted to the hospital in August of 2016 due to a high fever and flare and during that time, picked up a very nasty intestinal infection that undid all of my medical progress...which leads us to here!

I just had the first of three surgeries performed that are geared to remove the large intestine and rectum in order to get my life back on track. So for the next 6 months, I will be pooping into a bag that is attached to the side of my stomach.

Proof...may be kind of gross

The main reason for doing this AMA is to bring more awareness to these IBD diseases that you can't really see (I can hide this bag underneath a sweater and prior to the bag, it's a matter of hiding my emotions). It is a physically and emotionally draining disease that has taken any sort of quality of life I had and completely destroyed it and ideally, I will get my life back on track soon enough. For others, maintaining a quality of life is more difficult since medicines don't work or surgery isn't an option. Please be mindful of others around you because if I learned anything from this experience, it's that you really have no idea what other people may be going through.

Thanks in advance for the questions!

Edit: Formatting

Edit 2: Thanks for the support and questions. Feel free to ask more, I'll get back to them later!

Comments: 137 • Responses: 54  • Date: 

volcompt13 karma

You say "in the next 6 months". I though you will have to permanently do that. Am I correct?

Also, how well can you cover that under clothes? I remember knowing someone for several years who had such a thing and I only got to know years later when my dad told me. I remember some funny smell on his car but not in him.

Does the bag preclude you from doing any stuff? Sports?

drumdude9214 karma

It depends on the disease...to summarize my surgery, this video really helps. Mine is temporary because basically, they are making me a new rectum (the storage unit that holds poop). While this process is in the works, I poop in the bag.

And it can hide in my waistband pretty well. Bigger clothing also helps.

And the adhesives are pretty strong...I can basically do anything with it (I haven't really done much yet but if I wanted to, I can go scuba diving or play football or run around). There are accessories also that are designed for certain activities like that.

palpablescalpel12 karma

I didn't know they could make new rectums!! Are you expected to poop "differently" at all when you have a synthetic rectum? Or is it just back to normal then?

drumdude9218 karma

It's crazy what the medical field is capable of! And yes! The large intestine removes water from waste which is why the normal persons poop is solid...mine will be an applesauce consistency in the future. I will also have to go more times a day than the average person since there is less storage for poop (lack of large intestine lol)...I will go LESS than I was going though, which is what really matters.

palpablescalpel5 karma

I'm very excited for you! Good luck!

drumdude922 karma

Thank you!

SJhelix8 karma


drumdude923 karma

Glad to hear that! That's great news!

SJhelix9 karma


drumdude926 karma

No colon, still rollin'.... that's awesome.

Congrats! That's awesome, how is your j-pouch??

SJhelix2 karma


drumdude922 karma

Awesome, I'm so glad to hear that!

huge_ox8 karma

Does the bag have any smell leaking?

What about at night? If you roll onto the bag or catch it?

What happens if you accidentally rip the bag out?

Have you lost the use the use of your arse?

What happens if you want to go for a wee and you exert too much pressure in your groin muscles?

How long did the surgery take?

Is the colostomy bag just for 6 months or will that ultimately get extended?

drumdude9212 karma

Luckily, no. Some bags have filters that allow gas to leave the bag (so the bag doesn't get blown up too much) without smell. Also, since my bag is at the end of my small intestine, it doesn't really smell like your typical poop when changing or emptying...it smells more like food.

In regards to sleeping or ripping the bag out, the worst that can happen is things get messy. The stoma (the end of my small intestine that is now outside of my body) can't be injured too much accidentally (it's pretty flexible and has no nerve endings).

Currently, my rectum is still inside me and diseased, so I have to go to the bathroom sometimes to pass blood/mucus. But no farting and no pooping.

Haven't had anything like that happen yet...but I don't see it being a problem.

Removing my colon took about 3.5 hours. They do it laproscopically so I don't have too much scarring. The second surgery removes my rectum and repurposes a piece of my small intestine into what's called a "j-pouch." This will ultimately allow me to poop normally again in the future. The third surgery is reconnecting things to the j-pouch after it's healed...then voila, pooping relatively normal again (no more bag after about 6 months).

JJNotStrike6 karma

As a person with an IBD, thank you for doing this AMA. I'm so glad it is being discussed more often than it was in the past. I still deal with people (including my two roommates and best friend) who think that my issues are due to my diet or not doing this or that.

My question for you is: if you have encountered friends or family that don't understand your issue (pass it off as a minor issue or something), how do you respond to them?

I've struggled with trying to explain that it's not just about the pooping, it's also the abdominal pain, the blood, the inability to hold bowel movements.

Any suggestions?

drumdude928 karma

Luckily, my friends and family are SO understanding with everything. The last month, I've been at my mom's house and didn't go out in public at all because I was going to the bathroom so many times a day. My friends came over though to watch movies and play games, keep me occupied and support me. One of my friends even gave me his old xbox for me to play.

A big reason they are so supportive is that there are other people we all know that have similar diseases, so I'm not the only person with it. Also, they are all pretty good people and if someone was an asshole to me about it, I probably shouldn't be friends with them to begin with...in regards to family, my mom has Crohn's so they are all understanding.

In regards to suggestions, I joined a facebook group recently that has over 10 thousand people with an IBD. To read the stories of these individuals who have it so much worse off than me is eye-opening. I recommend joining a group like that and letting your friends and family see it. Let them realize this isn't just in your head, that it is something that is physical that you can't really control.

Also, complete honesty. I've learned to be really open about my body. If someone doesn't understand, I will literally tell them that I was bleeding. I would tell them that I woke up 6 times in the middle of the night because I was afraid I was going to poop the bed. Being honest allowed me to be informative, so I tried to follow that.

pussgurka5 karma

What were some of the symptoms that you had?

drumdude9219 karma

I was pooping between 10 and 20 times a day. Since diagnosis, I've had about 15 accidents since I can't really control when I go....this lead me to fear leaving my apartment since I couldn't stop going...which lead to depression and anxiety.

I lost about 30 pounds since August due to lack of nutrient absorption and no appetite.

Bleeding while pooping, abdominal pain, lack of sleep due to waking up for bathroom use....this lead to constant fatigue.

Due to immunosuppressant medicines, more likely to get sick.

And just crying a lot. I rarely cried in the past but I soon became vulnerable to even the stupidest thing and tearing up over it haha

Lilebi4 karma

How often do you need to change the bag? Can you change it when you're not at home (like in a public bathroom)?

I'm really happy for you, and wish you all the best in the future.

drumdude925 karma

Thanks so much!!

I need to change it every 3-4 days...emptying is a few times a day and depends on what I eat. I can empty out in public (it's as simple as undoing a ziploc bag) but changing is a little more complicated and I need to do that at home.

MrTotoplay4 karma

And what happened to your work?, meanwhile you have a special payment, permission or you quit?

drumdude924 karma

I'm a PhD student and my adviser is SUPER understanding with all of this. I'm taking a medical withdrawal from school but due to funding that I received, I am still getting paid and maintained my health insurance. Once I feel a little bit better (recently did the surgery), I plan to do research from home...but overall, I am REALLY lucky that all of this stuff is happening now while I have the ability to take some time off.

MrTotoplay2 karma

Of course, the most important thing is that you can recover properly and don't have too much worries.

And asking a personal/professional question: in which area you got your PhD and in what are you researching?

drumdude924 karma

I'm currently working towards a PhD in mechanical engineering and I do research in MEMS (MicroElectro Mechanical Systems)...basically, different types of sensors that are used for aerodynamic purposes (sensors for airplanes mostly).

vansnagglepuss3 karma

This is very neat I always thought once you got the bag you had it for life (my moms ex had one).

So once you get the final surgery is it likely you won't have problems in the future? Will you continue to take pills? Do you digest faster now that you have less intestines?

I know what it's like to have something attached to you all the time I have an insulin pump, do you change it daily completely or just dump it out?

drumdude925 karma

Nope! Technology is pretty amazing and people with my disease may have the option of a temporary one :]

I may have some problems in the future but they will be new problems (inflammation of the pouch they put inside me, some temporary problems with controlling bowel movements, etc.)...but ideally, nothing with the colitis that started this whole ordeal.

I may take some pills like immodium to slow down digestion but nothing like the poison I've been taking for the last 2 years haha

I definitely digest faster now but I don't even realize it! It may sound like nothing since most people don't recognize that they're digesting but when I would chew gum in the past, I would be in pain later on. Now, no pain and no problems :]

I dump it a few times a day and will change to a new bag every 3-4 days.

vansnagglepuss1 karma

Thanks for answering and sharing. I hope everything goes well for you and you experience a great future :)

drumdude921 karma

Thank you!!

fisherman2063 karma

How many days post-op are you?

I also have a J-Pouch. The 6 months with the ostomy suck, but after you make it through all that, better days await. The time between surgery 2 and 3 (about 5 weeks in my case) were the worst.

I did my surgeries in 2003, so I am coming up on 14 years w/o the colon. I live a totally normal lifestyle, eat and drink whatever I want. Go to the gym, run around... the surgery definitely saved my life, and allowed me to go back to being with my friends and family. I cannot express enough gratitude to my surgeon.

From time to time, my surgeon would call me and ask me to come speak with some patients who are considering getting the same procedure. Perhaps you can do the same some day.

Kinda funny, I've been w/o the ostomy for 14 years, but I still have dreams where it leaks, or something disastrous happens, and I wake up and remember that it's all gone.

Keep your head up, UC is rearview, it's all up from here!

drumdude921 karma

I really needed this post, thank you so much for sharing. I really really appreciate it

Gerry_and_Gerdaline3 karma

I have Crohn's Disease so I feel your pain. A colostomy bag has always been possibly in the cards for me, but luckily i've never had to get one. I have always been curious though about what it's like to have a bag.

My big question is, do you feel like you need to pass a stool anymore or do you not have that feeling?

drumdude9211 karma

I'm sorry to hear that, I feel lucky that my disease is so specific and surgery is an option...my mom has Crohn's and surgery isn't really a move she can make.

Honestly, outside of some post surgery pain, I'm super happy about it! I went out to dinner last night for the first time in forever! I even got ice cream afterwards ! I'm really optimistic about the future.

And I don't feel any need to pass stool. It all happens in the bag (even farting). I still pass blood/mucus a little but that's due to my rectum still being present and diseased. It isn't too often though and there isn't any urgency with it, unlike before where I was worried about shitting my pants if I left to get the mail haha

Gerry_and_Gerdaline3 karma

Even farting? That actually sounds convenient

drumdude926 karma

hahaah no more smells. It does make some noise though and I can't control it...makes dinner time funnier I guess lol

I_tend_to_correct_u9 karma

Can you put a balloon on it and collect your farts? I'd carry one around with me in case someone annoys me then release it in their face.

drumdude927 karma

The important questions ^

itstaysinside3 karma

how is the connection between the bag and your body, how do you keep it infection free? ( guess there is some area where the plastic and skin are connected?)

drumdude923 karma

So the bag connects to my body with a really strong adhesive...different types of bags have different adhesives and I'm still troubleshooting which bags are best. There are certain powders that are used to reduce any sort of skin irritation.

Infection is possible if the bag isn't put on right...if the bag is secured properly, poop will only touch the bag and not my skin. When I change the bag, I clean the area around the stoma (the little thing that's sticking out my stomach that poops) to ensure that infections don't really happen. Proper care is required.

burgeremoji1 karma

Is the stoma sensitive? It looks like it would feel odd to touch, but then also would the intestines have nerve endings anyway? I'm glad life is on the up for you!

drumdude922 karma

No nerve endings so I don't feel anything! And thank you!

this_is_pie3 karma

Hello! I also have ulcerative colitis, in fact I've had it for almost 10 years. Surgery is certainly in my future. I've heard that the stoma sometimes makes fart noises when you pass gas or #2. Is that true? If so, can you hide it? What sort of foods do you eat? Since you no longer have a colon. How long were you out for your surgery? The second surgery is when the j-pouch is created, so are you going to get a larger or smaller one? My doctor told me that the bigger it is, the faster the recovery (normal-ish poop faster) but the smaller it is, you are less likely to get pouchitis.

Edit: wording

drumdude923 karma

Haha yes, it does make fart noises. I currently don't hide it but I am trying out new bags and some are designed to muffle it.

I can eat basically any foods now which is amazing since I barely ate at all prior. I was out for about 3.5 hours. The surgery was done laproscopically so I have minimal scarring.

And I honestly don't know yet, that's something I need to talk to the surgeon about in a few weeks. I hear pouchitis is bad but controllable with antibiotics so we'll see what he has in store (maybe it depends on my body?).

Good luck to you with surgery if you go that route, if you have any questions, don't hesitate to PM me!

artichokedude2 karma

Do you have to drink more water? Is there food that you aren't allowed to eat?

drumdude924 karma

Yes, I need to drink about a gallon a day. If I don't, it's likely I can get dehydrated and might need to be readmitted to the hospital. The nurse told me that's the number one reason why people are readmitted after this surgery, they don't drink enough water.

And yes, I shouldn't eat popcorn, uncooked fruits/vegetables, seeds, other foods I can't think of at the moment but if I was offered them, I know that I should stay away. It isn't too difficult and I don't mind considering I can have ice cream again without being in pain!

KarmaMcPoster2 karma

Have you pooped today?

drumdude924 karma

The little guy is CONSTANTLY pooping, even a little. It's like your heart beating...you can't control it, it just happens.

AuroraEuphoria2 karma

Now, maybe it's because my brain might not be thinking about this correctly, but how exactly does it go from your stomach to the bag? Like the path I mean, because I can't imagine it right now.

drumdude924 karma

Sooo this is basically the path in the normal body.

Mouth -> Esophagus -> Stomach -> Small Intestine -> Large Intestine -> Rectum -> Out

They just removed my large intestine so it's more like:

Mouth -> Esophagus -> Stomach -> Small Intestine -> Bag

The end of the small intestine is what is sticking outside of my body and goes into a bag. Also, the rectum is still there for the moment and will be removed in the next surgery.

AuroraEuphoria1 karma

Ohhhhh, ok! Also, does this affect what you can eat?because like if you can't eat internet cookies no point in sending them

drumdude921 karma

Need to be careful about certain foods that can causes blockages. I also need to watch eating too much fiber, that makes digestion harder and this needs to be as easy as possible.

AuroraEuphoria1 karma

Gotcha. Well, hoping that your surgery goes well for you!

drumdude922 karma

Thank you!

fuzzy_unicorn2 karma

I have Crohn's disease so I know the struggle. My cousin has ulcerative colitis. It kinda sounds shitty to say but sometimes I wish I had ulcerative colitis instead so as a last resort I could be "healed" with surgery. I dealt with depression at the start because I couldn't deal with the fact that I have an incurable disease and I would have to live with it my whole life and you can't do anything about it. Don't get me wrong tho - both diseases are fucked up. Good luck for your future surgeries :) my questions :

Have you ever dealt with depression because of your disease?

When did you get diagnosed? And how long did you try treatments til you decided to do the surgery?

drumdude925 karma

Yeah, I feel you. My mom has Crohn's and surgery isn't really an option for her (luckily, medicines work for her).

I wasn't diagnosed with any sort of depression but I felt depressed. I got out of a long term relationship while adjusting to staying in graduate school in the boring city I live in...couldn't really leave my apartment due to the disease so I rarely hung out with friends or tried to meet new girls. I got really lonely really fast. I definitely cried a lot. I hated the fact that I lost a ton of weight in such a short period, made me pretty self conscious. It was all so frustrating because it felt like there was nothing I can do. Luckily, I feel much happier now and am looking towards a brighter future.

I was diagnosed about 2 years ago. I did all sorts of pills, switched to Humira injections, then Entyvio infusions...nothing really worked. I got Cdiff when I was hospitalized and that undid any medical progress I made with those treatments. That's when we decided on surgery.

fuzzy_unicorn2 karma

Thanks for your answers. I don't know anyone with a disease like that besides my cousin so it's interesting to hear another story. I wasn't diagnosed depressed either just felt really meh. And it felt like nothing made sense anymore. I broke up with my boyfriend at that point too. We've been together for 4 years at that point but he couldn't deal with the disease and wasn't supportive at all. So you had a lot of different meds before too.

What's Cdiff? Never heard of that.

I got diagnosed like 2.5 years ago. Tried all sorts of pills and steroids first. Then humira injections (which helped me a lot) but as soon as I stopped humira the flare up with symptoms came back. So eventually I had budesonide and humira. Then I managed to get off humira. I'm clinically in remission now (no symptoms atm) with budesonide - but colonoscopy showed I still have the same inflammation even tho it's not as bad. So it's budesonide and mesalazine now. I hope the symptoms won't come back and I'll get rid of that inflamed part.

Did you ever try any plant based meds? Like Boswellia?

Do you smoke?

drumdude923 karma

There's a facebook group full of IBD people (almost 10k people in it) who all post their stories and questions...it's been a very helpful community, I recommend it!

Waterrat posted about Cdiff so I won't go into it.

I'm glad to hear that your medicines are working! Hopefully it stays that way. I did start smoking some CBD oil that helped relieve pain but it wasn't a permanent solution. It was helpful though in times I was really hurting!

Waterrat1 karma

I got Cdiff

So,why did they not give you a fecal transplant?

drumdude922 karma

My doctor wasn't too big a fan of them and I was so frustrated that it seemed everything would be temporary. Plus, medicine removed the Cdiff within a few weeks...colon was still damaged though. Surgery is a much permanent solution.

edit: extra information

Waterrat2 karma

Ok,thanks for explaining. My gastroenterologist, who did my polyp resection does them. I was just baffled..But since the drugs cleared it up,well that's ok too. Anyway,when all is said and done and your doing good,would you give Reddit a follow up?

drumdude923 karma


gepgepgep2 karma

Same here.

Although I have UC, I'm pretty glad that I have it instead of Crohn's. It seems like with Crohn's, there isn't really a sure-fire way of getting "last resort treament".

Best to you and treatment.

drumdude921 karma

Yeah, same here...at least we have some options. Thanks so much.

FitForFifity2 karma

I have a friend that has Crohn's and she's at her wits end. She'll be going to Mayo for last resort evaluations before the need for surgery. You guys are so brave! I'm curious because I'm lost. Will the Dr's stretch and use your small intestine to replace the large intestines or use something else?

drumdude922 karma

Good luck to your friend! It's definitely scary but worth it to get your life back.

And that is more or less what happens. They repurpose a piece of my small intestine as a "j-pouch" which will ultimately act as a rectum/large intestine. Once that is done, I'll be going to the bathroom normally again.

FitForFifity1 karma

Ok, thanks, yeah I saw that after reading some of the other questions. My friend says that she gets a little relief if she doesn't have any gluten related food. What kind of diet changes did you try?

drumdude923 karma

Nothing with a specific name...I learned what hurt and what helped through trial and error. I limited my diet to rice, chicken, crackers...a lot of bland foods. I never ate fried foods, drank alcohol, or had anything spicy. If I did, I would regret it later.

Yesterday, I had ice cream for the first time in forever and enjoyed it pain free so that was pretty awesome. The best part about this whole thing is being able to eat almost everything that I want now (and gain back the weight I lost!). I'm looking forward to it.

starwars_and_guns2 karma

I suffer from extreme IBS and have been interested in a colostomy bag. Has it made your life better?

drumdude922 karma

Absolutely! I can eat almost whatever I want without fear of pooping myself or being in pain. If considering, I think it's something that must be thoroughly looked into...but if it's a serious option, I couldn't recommend it enough !

mbd5212 karma

Do you worry about going out in public? I think that I would be worried about people noticing or maybe smelling the bag. Thanks for doing the AMA.

drumdude923 karma

I've become pretty accepting of my disease and don't mind doing what's necessary to get by. I don't really care what people think of me. I've used single bathrooms (just a toilet/sink in a room, only one person at a time) designated for women before with disgusting looks because they were so astonished I would go in there but fuck those people...It was better than me having an accident.

So I don't really worry about going out in public except that my bag may burst or something but that's not likely if I prepare accordingly. I'm just happy to be able to leave the house now since I was basically chained to my toilet for 6 months.

In regards to smell, most bags are designed to not allow that to happen. Plus my poop smells like food anyways since the colon is what gives the normal person their "poop" smell, so if they do smell it, it would just smell a little off...nothing too suspicious.

belfastjim2 karma

Did you have any family history of the condition? Both my dad and aunty have had ulcerative colitis and experienced the exact treat/operations that you are undertaking. Its a terrible disease. I suffer from IBS myself and basically live in fear that i might one day obtain UC due to my family history.

I will add that both my dad and aunty live very active and fulfilling lives post operation. It took an emotional toll on my dad during surgery, which i might add left him with huge scarring down the centre of his torso (He misses his belly button), but he is now living life with no limitations apart from the regular (controllable) toilet trips.

I wish you a speedy recovery and hope you enjoy your new inspector gadget poop parts!

drumdude921 karma

My mom has Crohn's and my aunt had UC before passing when I was about 6.

Glad to hear your family is doing well. I hope you don't get the same disease, I wouldn't wish this upon my worst enemy. I wish there was some definite way to avoid the disease, it's my biggest fear in regards to having kids someday.

And thank you!

LavaMuffin2 karma

is it as uncomfortable as it looks?

drumdude923 karma

It's a little uncomfortable but relative to the pain I was having prior surgery, it's soooooo much better.

SoylentRainbow2 karma

Are there certain foods that you can't eat at all?

I'm thinking of things like a plate of nachos with hot sauce, jalepenos, pepperoncini, and maybe some greasy bean dip.

drumdude923 karma

Prior to surgery, that entire meal is a death sentence (not actually but I would have ridiculous amounts of pain and suffering from it)...now, the worst thing is the jalapeƱos if they have seeds. Seeds are bad, may cause blockages since they're hard to digest. But I shouldn't have any problems with hot foods now, which is great because I haven't had any in forever!

SoylentRainbow2 karma

Did you have other symptoms beyond the bowel issues and, if so, are those relieved now that you have had the surgery?

drumdude923 karma

Yes, absolutely. Fatigue, lack of appetite, depression, lack of sleep, weight loss, etc....I'm slowly overcoming these with each day. I've definitely gained my appetite back and the fact that I'm able to leave my house makes me happier...hoping to gain the weight back with time. Definitely a more positive lifestyle though and I'll slowly get my life back in order with time!

qawsedrf121 karma

Has this happened yet?

Changing the bag and the SI decides to go mobile and shoot shit out?

That's why my ma always sat in the bathtub to change. Also, the adhesive can irritate the skin over long term use.

drumdude921 karma

It has a mind of its own.

AntTse1 karma

Do you think this will affect dating, and/or sex?

drumdude921 karma

Yeah, probably. It's all possible physically but I'm not expecting this to be a major turn on for people lol

I'm trying to focus more on myself and my research for graduate school while I have this for the next 6 months...once I get rid of it, I'll change gears and get back out there.

vonlowe1 karma

Looking back now, what were some symptoms that you didn't realise were from UC at the time?

drumdude921 karma

Hmm I'm not sure. When I first started bleeding, I blamed it on wiping too hard or eating red foods. I blamed stomach pains on my diet. My ex was pretty insistent that it was something more and she was ultimately the push to get checked out prior to diagnosis.

ShraugerKnowsBest1 karma

How are family and friends reacting to this change?

drumdude921 karma

Very supportive, especially my mom...she helps me change the bag and stuff if I need it. My younger brother finds it fascinating and will constantly ask to see it. Friends are just happy that I can go out with them again.

Jcashman3171 karma

How do people tend to react when they learn this?

drumdude922 karma

If it's someone that knows me well, they're pretty happy I went through with it because they were aware of how shitty my life was prior.

I haven't really had to explain this to anyone new yet since I'm off school for the semester to prepare for other surgeries and there aren't too many people my age around. If they don't understand though and make a big deal about it, then whatever...I probably won't try hard to continue my friendship with them.

Jcashman3171 karma

Yeah i guess you can get creeper vibes from anyone on any subject... yours just happens to be ripe for grade-school jokes.

Glad that your friends are supporting you!

drumdude921 karma

Yeah haha and thank you!

rickmuscles1 karma

How does your condition affect your ability to workout or stay active?

drumdude921 karma

Prior to surgery, I was always tired and didn't do anything (plus, going to the gym resulted in me doing a set, running to the bathroom, repeat).

This surgery is pretty recent so I haven't gotten back to exercise yet but it shouldn't limit things too much. Some bags are designed for sports and other activities so if I decide to do something sporty, I'll manage.

stalk_craft1 karma

My mom is a cancer survivor, and while she managed to do it without chemo, she ended up with a bag and 4 surgeries (3 major). Thank you for doing this AMA. It would have really helped someone like her adjust and figure this out.

My mom used to carry a plastic water bottle around(think reused Aquafina bottle), which made dealing with the bag in public restrooms easier without obviously lugging around medical type equiptment. My question for you is what kinds of tips, tricks, etc have you discovered to make this situation less cumbersome?

drumdude921 karma

Glad to hear your mom is a survivor, I hope she is doing well.

I haven't really discovered any tricks yet, this is all relatively new to me. Changing the bag requires much more equipment and I do that all home...there isn't a rush to change it so if I delay it a day, it isn't the end of the world. Emptying is fairly straight forward so that hasn't been a problem. I do keep gloves/towels handy in case things get a little messy. Luckily, nothing too eventful has happened yet. If I discover some type of trick, I'll let you know though!

Bertasauraus1 karma

Hey there.

I have Crohn's and UC and am really hoping to avoid resection down the line.

  1. Has your health noticeably improved since having parts of your colon removed?

  2. What meds were you on that didn't work?

drumdude922 karma

Yes! I can eat now without pain. Granted, this is only the first step in a three part surgery but as of now, I'm feeling positive about it.

I did prednisone, lialda, balsalazide, tacrolimus, a few other pills I don't remember the names of...Humira injections and Entyvio infusions. The only thing that really helped was prednisone but it was destroying my body (specifically, my bones). Since the immunosuppresants weren't working, surgery was next step. If you have any more specific questions, let me know!

Bertasauraus1 karma

Oh happy to hear it! I've done prednisone before and it was absolute hell. I'm doing bi-weekly Humira shots right now, but I'm happy you figured out something that worked for you.

Are you taking medication at the moment/will you have to in the future?

drumdude922 karma

Yeah, Humira seems to work for everyone I know except me haha

I'm not taking anything at the moment...in the future, I might need to take Imodium daily to slow down the system but I don't think I'll need constant pills to manage disease...at least I hope not!

Bicheswantnikes1 karma

Hi ! Sorry for my english I'm French.

The Crohn disease is unfortunatly into my familiy. Some of my uncles and my mother have it. I'm myself highly suspected to have it, because (of my mother +) I have some symptoms.

They cut 30cm of her colon 10 years ago, she suffered with the scar, but I didn't remember seeing her with a bag outside the hospital. You are actually really scaring me.

So, 2 questions :

When did you know that you had the Crohn? It took 5 years for my mother.

How are you? When my mom tells me "I'm fine" I want to believe her but her face is actually terrible (with the cortisone, the pain...). How traumatic was the surgery?

Good luck !

drumdude921 karma

Hi from the U.S.!

So what I'm guessing your mom went through: she only had a portion of her colon taken out, so they resection her so the flow of waste is still continuous...because my entire colon was taken out, the bag is put in place in the meantime prior to future surgeries.

Honestly, it depends on the day. Relative to the past, I'm physically great. Emotionally, it's frustrating that this has happened but it's temporary and I need to keep telling myself that. Some days are harder than others.

Surgery isn't too traumatic because it was done laproscopically but that depends on the person...I'm healing pretty well.

All the best!

Feebedel3241 karma

How old are you? When did you start to notice a problem? And are you able to go to school? Work?

drumdude922 karma

I'm 24, and I started having symptoms around 20...wasn't diagnosed though until I was 21.

I'm a PhD student and I'm taking medical leave...I still get funding for my research so luckily, I'm not suffering too much financially while I recover. When I was still enrolled, it was rough. Spent a lot of times running to bathrooms and leaving class, getting exams rescheduled when I wasn't symptomatic, etc. My adviser is really understanding and wants me to put my health first, so his support is really appreciated.

Feebedel3241 karma

That would be frustrating. This is an interesting thread. I was recently diagnosed with vestibular migraines and am often worried about leaving the house and am home bound some days. Glad to hear things are improving!

drumdude922 karma

Yeah, I hate being home bound due to health, I feel so useless. Hopefully, those will reduce and you can get out. Thank you so much.

Trauski1 karma

Prior to surgery did any foods provide some relief for your symptoms? I have UC and rice is my go to. Anything fibrous can seriously fuck me up. Did you have any gas or bloating with your symptoms?

drumdude921 karma

Eh kind of. Rice definitely helped...mashed potatoes. I really didn't eat too much when I was really symptomatic which probably made things a little worse.

And yes, pending the day.

Fiber sucks and ruins everything lol

Brian_Peppers_Lives-2 karma

Are you routinely gaining access to vaginal intercourse during this trying time?

drumdude924 karma

My long term girlfriend and I broke up right around the time this entire ordeal started, so I haven't met anyone new to continuously have sex with it. I did ask the doctor about it though and she said that it isn't an issue at all. There are opaque bags that cover up everything which is probably desired unless the girl is into that.

There is one girl I'm talking to at the moment who is aware of my surgery and everything happening, so I will update you how it goes if we hit it off lol