Here's a picture of my bag today: Pictures of me post surgery: Pictures of my bag after I had abdominal sepsis and an abscess that needed more surgery about 7 weeks ago: Being marked up for the stoma:

I run a blog for people with scars/burns/colostomy bags that want to be able to dress like everyone else and give hints and tips on products I use to help with these things and some survival kits and outfit test drives

EDIT: HOLY SHIT FRONT PAGE! Yaaaas I'm as famous as cute dogs on /r/aww yet nowhere near as cute! ALSO IM NOT TRANSGENDER I MEANT POST ILEOSTOMY SURGERY! 😂

Also check our /r/crohnsdisease for more info!

Comments: 1754 • Responses: 76  • Date: 

kkehoe51149 karma

Sorry but I read this as a transsexual with chrones, did I misread your title?

Jennibearrrr727 karma

Yeah sorry I'm not trans, think I might have worded the title better!

atomic1fire233 karma

Probably about as much as I did on first glance when I misread 3 month as 3 month old and got confused as to why a baby was doing an AMA.

Jennibearrrr57 karma


dat_shermstick189 karma

Yeah, I read the title and I was like "Goddamn, she went in for surgery and was like, 'I'll have one of everything.'"

Jennibearrrr57 karma

Aww shucks! 😳

mlkelty39 karma

Yes...we did. Damn post-op terminology.

Jennibearrrr27 karma

I feel like a medical encyclopaedia these days I forget most people have no idea what I'm on about!

dsrtfx_xx994 karma

What's it like having a semicolon?

Jennibearrrr748 karma

It's a fantastic excuse to get a semicolon tattoo which I plan on getting as soon as!

DinosaurSprinkles152 karma

Are you from New Zealand?

Jennibearrrr259 karma

Nope Scotland!

alzirrizla155 karma

hey =)

Jennibearrrr83 karma

Oh my god this is my favourite comment here!! 😂😂😂

jimmywus_throwaway29 karma

oh hot damn that's going to be an amazing tattoo, where do you think you want it? I'm thinking arm or forearm to show it off :D

Jennibearrrr40 karma

I want a little one on my wrist! I already have a tattoo that says "she flys either her own wings" in Latin to celebrate getting my surgery to get some independence back!

LOOK_AT_MY_POT12 karma

"she flys either her own wings"

I don't understand how the word "either" fits into that sentence.

Do you mean the popular tattoo "Aliis Volat Propriis"? If so I guess that was a typo, and you meant "with" as opposed to "either". If it wasn't a typo, why'd you change the word?

Jennibearrrr19 karma

Sorry it was autocorrect I must have spelled with wrong and it came up with either!

VAGINIS_696969364 karma

What does your poop look like?

Jennibearrrr603 karma

It's basically like a porridge consistency when I've been having a good day eating, however just now it's mostly a brown watery liquid which I empty into the toilet. It can change colour with what I've ate too which is funny... Although I did end up calling my doctor in a panic when I ate beetroot and though I had a bleed!


My older brother ate a massive amount of beets when he was five, at the neighbor's house. My mom, a nurse, flipped the fuck out when he said his pee was red. Mom asked him if he said (edit: ATE) anything funny, he said nope.

He got rushed to the ER and they found no red blood cells at all in his urine. Only then was he asked specifically, "Did you eat any beets?" and he said, "Oh yeah, today I ate a LOT of beets, I love beets."

well it turns out by beets turning his pee red, he had some other problem and mom had to put him on a diet. So not a totally useless ER visit. but still tons of panic over nothing.

Jennibearrrr80 karma

Hey at least he has this story to tell! I plan on telling everyone about my fancy colour changing poop! Hell id even show them it!

missandei_targaryen124 karma

Nurse here. The best I ever saw was a woman with an ileostomy that started to put out- I am not exaggerating here- neon green stool. Like a crayon. It's a high up ileostomy, so her usual color is yellowish, and then we gave her a blue icee to eat, so... yellow + blue = green. Kinda freaked us out for a few minutes until we figured out what was going on...

Jennibearrrr227 karma

I HAD GREEN POOP AFTER A BLUE SLUSHEE! It was so bloody cool I took a picture and sent it to my mum

ScatmanDosh297 karma

Hey, fellow Crohnie here. My condition has been deteriorating, and I'm just curious as to when you and your doc decided it was time to get the surgery? Where was your Crohn's most active, and how do you feel now that your large intestine has been removed?

I was diagnosed a year ago after developing an abscess, got a couple of colonoscopies since and they found many ulcers and scar tissue. My doctor said surgery is starting to look like an option at this point, but I'm not very afraid.

Jennibearrrr347 karma

Hey friend! I'm really sorry to hear you aren't keeping too well, I hope you're going to have a speedy recovery and a really long remission!!

I have been offered the surgery from day one when I was 13 and diagnosed as they knew from my colonoscopies that I was severely scarred and ulcerated... I however was a stubborn little shite and refused it until I'd basically had every licensed crohns medication/injection/infusion available and even a trial drug called humira! The only reason I had to have surgery was because I knew I didn't have other options left and without the surgery id get worse and worse until I ended up with peritonitis.

My crohns was most active throughout the whole of my large intestines apart from my rectum, there was so much scarring that during my surgery my surgeon said they fell apart in his hands as he was taking them out... Oopsies!

I actually feel like a whole different person now I've had surgery, I won't lie, the first few days are miserable at the time but I was so out of it on pain meds I actually don't remember the worst of it and I've heard most people are the same way. The ileostomy is weird at first cos I was scared to look at it but once I did I realised I'd been silly and that it actually wasn't scary at all, it tickles sometimes! Within the next 3 months I've been told to expect to feel 80% back to normal but I've not had "normal" in 8 years so it's pretty awesome not being in pain like I was before, now my only pain is a healing pain which is a lot more easy to deal with.

AdmiralFacepalm294 karma

Are you happier? (Sorry really easy question)

Jennibearrrr675 karma

I would say I am happier although I am under no illusions that if I didn't get the surgery I wouldn't be here to have this AMA!

I'm currently on some pretty strong antidepressants and anti anxiety meds as I had trouble dealing with the long recovery time and needing an second surgery that had me pretty touch and go for a week or so but I don't think I'll be on them long term once I am fully used to dealing with the ileostomy and can do more for myself.

I am ridiculously happy that I no longer go to bed terrified that I won't wake up in the morning as I was so bad that I knew I was always at risk of my intestines rupturing and getting peritonitis which meant I wouldn't wake up and I'm also really glad I no longer need any immunosuppressants for the time being as the surgery seems to have me in remission now for the first time in 8 years!

Lastly I'm really happy now that I can rest easy knowing I will be around (hopefully) for a very long time and can enjoy finally getting to do everything I've ever wanted to but been too sick for and being here to spend as much time as I can with my family, friends and my other half!

AdmiralFacepalm248 karma

I asked a crappy question, you gave an amazing answer. Thank you very much and I hope life keeps getting better for you.

Jennibearrrr288 karma

I actually really liked your question, through everything is never really thought about it properly until you asked! It's made me feel better knowing I do see the end of the depression and anxiety not too far away now :) thank you!

ryumichael81 karma

I just want to say I went through what you're going through. 3 years post surgery and no return visits or pain. Stay strong!

Jennibearrrr50 karma

Ahh I really hope I'm like you one day!!

OH_NO_MR_BILL65 karma

I'm very happy for you:)

Jennibearrrr69 karma

Thank you so much! :)

Adahn_The_Nameless23 karma

I was going to ask if you felt the surgery had improved your quality of life -- but reading this answer it sounds like it spared it or saved it.

So let me ask you a slightly different question -- knowing what you know now, would you have had this done rather than years (I just realized, I don't know how long you've been symptomatic) of dealing with this disease?

Did the remicade help? Did any dietary changes stave off attacks -- I've read gluten free can help, slow carb can help -- and they do to a degree, I think, but some days it's hard to tell.

Jennibearrrr39 karma

I seriously wish they just did the operation when I was 13 instead of letting me choose medication and stuff instead! Maybe I'd have been more normal growing up!!

I went into anaphylactic shock on remicade, so I'm probably not the best person to ask about it!

Never done a dietary change, my doctor advised against it after my ill fated attempt at going veggie that made me need a blood transfusion since I had basically no iron in my body!

Adahn_The_Nameless6 karma

Thanks for the reply. Follow up question: other than the surgery, what was your most successful treatment?

Jennibearrrr9 karma

The medical trial drug andante! I got to finish my HND at college and start a job although I'm on sick leave now!

improbablewobble208 karma

You kind of look like Arya Stark. Do you have a list of people to kill?

Jennibearrrr253 karma

Thanks! I've always thought she was pretty so that's a little confidence boost :)

Haha nope, no list of people to kill, life's too short to spend holding grudges about stuff so I can't imagine ever needing a kill list!

Mzilikazi81183 karma

The kill list is so you don't HAVE to hold grudges.

Jennibearrrr112 karma

That's a good point but why waste valuable napping time on trying to get the list together? Id rather a wee disco nap any day of the week over doing practically anything! ... God I'm so lazy!

venxz60 karma

You actually remind me of Alyson Hannigan. Did you go to band camp?

Jennibearrrr76 karma

Hahahaa I didn't go to band camp but I do play flute... Hahaha!

IDDQD-IDKFA122 karma much shit would you say you put up with?

Jennibearrrr151 karma

Hahaha I'd say a fair bit... Not just from the stoma (which is surprisingly more than I thought would poop out a little hole) but from the whole crohns thing too, my body likes to be a difficult wee bugger most of the time!

Honolula69 karma

This is interesting, my husband has UC and his heritage is english Scottish and irish mostly. He said "it's all the UK in my inside just fighting each other"

Jennibearrrr93 karma

Hahahaa I can safely say I agree! My parents always laugh at how my mums Catholic and my dads Protestant and they say my cells are fighting each other for who wins in the religion front!

pm-me-uranus50 karma

AND you're british?! Jesus, can you just not win?

Jennibearrrr178 karma

Yup! I'm Scottish and ginger too so I really do have feck all going for me don't I! Imagine my accent as cho Chang from Harry Potter asking for "2 pumpkin pasties please" and you have my voice haha!



Jennibearrrr92 karma

Oh sweet Jesus the blushing 😳

stein85105 karma

Hey there! Former colostomy bag user here. I have a few questions, more from a curious guy that never talked with someone that uses the bag than anything else. If you don't want to answer, no problem!

  1. Is the bag all "glued" to your tummy, or the bag is attached to something that is attached to your tummy?
  2. How frequent do you clean the bag?
  3. Have you ever had any problems with the bag, like leaking or something like that?
  4. When you go out and suddenly your body decide it's time to fill up the bag, do you feel bad?

Jennibearrrr158 karma

Hey friend! I love meeting people that have been through the same journey, kinda weirdly bonds is through our poop don't you think?

I'm more than happy to answer your questions!

My bag isn't exactly glued on but it's already got a sticky flange (baseplate) that's attached to it and I just peel off my old bag, give Geoffrey a good clean and then dry it off and stick the next one on before I'm good to go!

I do sometimes, especially since it happened at my boyfriends birthday dinner and I felt bad having to go to the toilet like 6 times in 2 hours! I think it was more because of nerves about going out to an unfamiliar place more than just having a hard working stoma, mines is pretty lazy sometimes and I usually only need 4 trips to the bathroom a day!

I clean the bag after I empty it as it feels nice and new instead of kinda dirty where I unrolled the bottom to let the poop out. I change it once a day just now although I could use one bag for 2 days if I fancied it but I just love the feeling of a new bag haha.

I've had a few major leaks because I'm a lazy git! I tend to sleep like a dead person so before I got my convex bags which give me a better bond to my skin I would have to sleep on a towel and have at least 2 leaks a week while sleeping. I had one leak start the other day while out with friends as it was my first time wearing jeans and they somehow moved against the bag so much it was peeling off! A quick toilet visit was enough to sort me out though.

stein8596 karma

Ok, now i'm getting more curious.

  1. How do you clean your bag when you're not at home? I'm asking this because the only way that I cleaned up my bag was under the shower. If I was in a place with no accessible shower, I couldn't clean it. I mean, yes I could try to take some of the poop from the bag, but usually was a messy job.
  2. Is your poop solid or liquid?

I know you didn't ask, but I'll tell you my story. December 2013, rushed to the E.R. because something was wrong. One tomography later and the doctor told me that I had to go to surgery because something was wrong. Opened up and the doctor removed 25cm from my intestines. Later, I found out that I had that I had that disease that starts with an C and ends with ANCER. I think you know what I'm talking about. So, got out of surgery with the bag, used for a whole year. Last February I went to the hospital to put it all back together. What was supposed to be a week stay at the hospital turned into a 23-days "vacation" on the hospital, including 8 days on the ICU. Now I'm fine, recovering from the surgery at home with some kick ass scars on my tummy.

Jennibearrrr57 karma

I either run it under the tap in the sink and jiggle about for a few secs til It gets all the inside or if I'm not able to do that I always have a LOT of flushable wipes with me!

Right now it's pretty watery but it's supposed to be a porridgy consistency

Jesus Christ you've been through the mill! That must have been so scary, I'm so glad you're on the mend!

Honolula55 karma

You named your bag? Love it.

Jennibearrrr56 karma

Thanks! It makes it easier to talk about it public I think!!

Bjorn-Odinson36 karma

Yeah, cause who could be afraid of a Geoffrey? He's just a nice bloke down the road.

Jennibearrrr17 karma


Bluelabel101 karma


Jennibearrrr81 karma

I just screenshotted this and sent it to my boyfriend, that is actually hilarious!! 😂

Hhumerus93 karma

I work in healthcare and help people empty their ostomies after they get them. It seems so routine to me, but I'm sure it can be new and uncomfortable for the patient. Any who, what did you like about how the nurses cleaned/changed your bag? What did you dislike?

Jennibearrrr125 karma

Hey! I just want to say thank you for your work, I know if I didn't get the help I do this would be a terrifying experience and having people like you to help is amazing.

I loved that my nurses always asked how I was doing with the bags and stuff like if there was any itching they'd immediately get me a powder to help, if it was leaking more they'd get a new type of bag etc. it made me realise just how easy it is to deal with and I loved that for the first few days they said I didn't even have to watch during a change, I looked at my stoma when I felt ready which was a huge deal for me!

The only negative thing I can say was that my first bag change after surgery the nurse just peeled the bag off really quickly and it was very painful so I did start to cry... Although she did go out her way to find me some adhesive remover spray which is honestly the best invention I've ever came across I LOVE THE STUFF!

Brooks9686 karma

Has this reduced the amount of food you're able to eat or anything like that?

Jennibearrrr190 karma

It's actually made me able to eat a lot more different foods than I used to as I no longer have my most badly affected area of pain (large intestines). I can now eat raw fruit and veg which is a first in years, red meat, dairy and mildly spicy food which I've never managed in my life!

All I need to be careful with is to not eat nuts, corn, popcorn, seeds and coconut while being extra careful with mushrooms, cucumber and pulses like lentils and chewing really well!

Wowsoysauce66 karma

How doesthis affect your sex life?

Jennibearrrr170 karma

At first it took 6 weeks before I'd even be okay with my boyfriend touching my tummy, I was really tender and had no muscle tone to really do much apart from lie there.

Funny you should ask but last night was the first time since my second surgery that we had sex and it was far better than even before my ileostomy, to not be in such pain or worried about potentially pooping was a massive deal for me! The bag doesn't get in the way so long as it's emptied beforehand so it's actually gave me a better sex life than I ever thought possible as I can enjoy it without being worried constantly.

It also helps having such a supportive other half, he has made it so much easier on me by being so attentive to my feelings and how I react to being touched that he can tell if something would hurt or make me feel uncomfortable so I can just get caught up in the moment.

The self consciousness is out the window too because I was in the verge of humping his leg like a dog that I totally forgot I had Geoffrey! (yes I named my stoma)

--X88B88--48 karma

He sounds like a sweet dude (BF, not stoma).

Jennibearrrr58 karma

He really is! Geoffrey isn't too bad either though!

__Shadynasty_33 karma

Why did you name it Geoffrey?

Jennibearrrr123 karma

It's a pretty funny story, I met a friend at college who was diagnosed with Ulcerative colitis which is related to crohns and he got his ileostomy last summer. When he found out I was getting my surgery too he said we should name each other's so I called his Cyril and he called mine Geoffrey and it stuck. Whenever we chat we always ask how they're doing, plus it makes it a lot easier to talk about in public rather than people maybe over hearing that I have an ileostomy and potentially acting weird.

__Shadynasty_53 karma

You seem like a fun person.

Jennibearrrr30 karma

Thanks! I'd like to think so!!

Ianjh45 karma

Since one of the other commenters mentioned they thought you look like Arya Stark, the fact that you call it Geoffrey (not quite Joffrey but close enough) makes it even funnier.

Jennibearrrr32 karma

My dad will find this hilarious! I've never personally watched the show but he's obsessed with it! 😂

greffedufois31 karma

I'm chronic illness girl too, (liver tx+ epilepsy) I know how awesome it is to find a supportive and understanding partner. My bf and I have been together for 3 years, he went into the relationship knowing about all my health issues yet still decided he wanted to be with me. That makes me happy. Have you ever felt like you're 'damaged goods' because of your health? I mean it in no insulting way, I've just dealt with that feeling before and wondered in anyone else had experienced it as well. I guess I struggle with the thought that I'm 'less than' and I'm always afraid my bf will get sick of me being sick, and he'll leave like all my friends did when I got sick at 16 (I'm 24 now) I too have some mental/emotional crap to work through as well, it seems common in those who've been ill for a long time or who required major surgeries. I don't have any ostomies, but I did have a few bile drains for about 8 months post tx, but for like a year before the tx as well. I've also been told by my docs that I should be able to naturally conceive one day, and should be able to carry the pregnancy without issues (hopefully) All in all, just wanted to say that even though I don't have the same medical issues you do, I'd like to be friends. It's always nice to find someone who doesn't just sympathize with you, but who truly can empathize and relate too. Congratulations on your recovery, hugs!!!

Jennibearrrr28 karma

Hey! I'd love to be friends! Send me a wee message and I'll add you on Facebook for a proper chat if you like!

I totally get the damaged goods thing, I was in a state for years because I felt no one would ever want me long term because it was all so much and my exes struggled with it to the point it eventually ruined the relationships! I actually got upset the other day when I was frustrated and said this exact thing to my boyfriend and he said I was so shut up because he wouldn't be here if he didn't want to be, then went and got me ice cream, the boys an angel!

SPQR840451 karma

So if you go in the bag now what did they do with your anus?

Jennibearrrr63 karma

They kept a few inches of intestines inside and stapled them over for now! I'll get surgery in a few years to get that removed and a "Barbie butt" which is basically my bum hole stitched up inside!

Metalgreek47 karma

Wait if your bum is stitched up inside...would that affect bum play? Sorry if it sounds rude, I'm just really curious...

Jennibearrrr81 karma

Yeah but just now b play could pop a staple and that would be one conversation I refuse to have with my consultant and my surgeon 😂

cara12345678929 karma

I read an article or something where someone let their husband use their stoma if you know what I mean. Thoughts?

Jennibearrrr115 karma

Yup! Rule number one of having a stoma is don't put a dick in the stoma... Oh how I wish I was making that up

cara12345678940 karma

they actually have to tell you that? wtf

Jennibearrrr58 karma

Yeah they said it was surprisingly common!! I have no idea how they manage it when the hole is so bloody small!

theryanmoore31 karma

That is... something. I'm not sure I wanted to know that. I'm cool with poop bags and yankin out guts but that. That's depraved.

Jennibearrrr25 karma

My thoughts exactly

AmericanFatPincher47 karma

Does this affect your ability to carry a baby around for 9 months?

Jennibearrrr90 karma

As I still have a tiny bit of intestines left inside at my tooshy stapled over apparently I should be able to conceive naturally and carry a baby to term, I would just be recommended to get a c section for the birth so I don't give myself a hernia.

The treatment for crohns that I have had however may have affected my fertility and the viability of my own eggs so if it comes to that point I would like to have an egg donor and use my partners sperm so I could carry the child.

fifty8th37 karma

My Sister in Law's condition sounds a lot like yours. Cronh's, no colon, the bag. She and my brother tried and tried to get pregnant and even tried adoption but finally they had a little miracle who just turned 4. Wanted to go natural but knew the C-section was the way to go.

I don't know a lot about it because I try to be the one person that is not always asking questions but I know she got really sick when they tried in-vitro fertilization. I guess what I am trying to say is from what I hear it was hard and at times discouraging but they conceived the twerp naturally after time and the pregnancy went surprisingly well. The only issue she had is she had to have her stoma redone after a while because it got so big during the pregnancy.

Jennibearrrr34 karma

That's actually fantastic to hear, thank you so much for telling me their story, it really is a huge relief knowing there are others out there who are going through the same thing and have actually got their little munchkin to show at the end of it all!

Boazizzle18 karma

Embryo adoption is way cheaper if cost is an issue for you. Just an idea!

Jennibearrrr11 karma

I never thought of that! Thank you!!

snacksfordogs7 karma

If you don't mind answering, which treatment(s) may have affected your fertility?

Jennibearrrr8 karma

Methotrexate potentially and a trial drug that the long term side effects aren't known but it could cause infertility

snipdawg43 karma

Cool your doing ama brings awareness to Crohn, I my self have it and just got out of the hospital after staying a week because I just got some some of my colon removed . My question is do you have to still take any medicine now since your intestine fully removed?

Jennibearrrr37 karma

Hey! I really wish you a speedy recovery that isn't too painful, one thing about us Crohnies is we are pretty tough cookies!

I'm currently only taking pain killers, anti anxiety meds and antidepressants with 4mg of omeprazole a day. No meds to treat my crohns directly, and hopefully will be medication free soon as I'm clinically in remission.

BigTaker42 karma

How does this affect your mental health?

Jennibearrrr95 karma

That's a bit of a tough one at the moment. It's currently really affecting it as I am recovering slower than I had hoped and had to get an emergency second surgery that caused my body to start to shut down due to infection so to help get my head around that I'm on antidepressants.

I also am only just starting to be able to go out so I'm on anti anxiety meds to make me less nervous about a potential leak or being sick in public.

I am however noticing that each day I don't feel like I'm as bad as I was the day before though so I feel like I am starting to get better mentally, plus knowing I would have died if I didn't end up with the surgery is starting to make me really happy to be here and less unsure of my bag!

shaneface00737 karma

Hey Jennibearrrr, I too also have Crohn's and I just wanted to say your such a strong person for the way that you are handling this. I understand the long recovery time and sometimes it feels like it will never end but it does get better. I would guess my questions for you are how long have you been dealing with your condition and what helped you get through the hard times? For example I had a feeding tube at one point because I wasn't able to keep anything down and the one thing that kept me going through that all was my mother at my bedside keeping my hopes up with her encouraging words.

Jennibearrrr32 karma

Hey friend! I'm really sorry you have to go through this too, crohns is a mean little thing isn't it, I really hope you're doing better now!

I'd say I'm kept going by my amazing family, they're actually unbelievably amazing! My mum spent every single day with me while I was in hospital, my dad took time off work to be able to help as much as possible, my brother who has cancer couldn't make it to see me in hospital for my first surgery as he wasn't allowed in my ward in case he got an infection but facetimed me constantly and gave my mum little presents to bring for me! I have a really large family and they all have been fantastic with visiting and keeping me company and telling me if I ever need to talk or they can do anything to help to let them know!

I also was lucky enough that last summer literally a week after I was told I'd need surgery I happened to meet the most perfect person in the world for me, he's been my rock and has went out his way to learn about crohns to help comfort me when I was down, held my hair back so many times when I was sick and still told me I was beautiful, came to visit me and even stayed with my family in the waiting room while I was going through surgery. I really don't think I'd be here if it wasn't for him helping me so much, I'd kinda gave up before I met him.

lexovinix22 karma

Are you allowed to do any high intensity exercising? What is it like moving around? Are you constantly aware of the bag?

Jennibearrrr26 karma

Eventually I think so! There's a few bodybuilders and stuff with ileostomies and they have banging bodies that put me to shame! It can be uncomfortable at times moving around but that's only because I'm healing and I totally forget I have the bag sometimes and only remember once it gets heavy and have to go empty it!

Leff_hook22 karma

Can I just say, you're fucking brave. I have a serious stomach condition, crohn's is what a couple of doctors are leaning towards, but because of medical issues with my brother I'm too bullheaded to get it checked out. Everyday I suffer but I'm too afraid to get it checked out. Last time I was in the hospital, I signed myself out and won't go back. When did you finally decide to get it taken care of, and how terrifying was that decision?

Jennibearrrr27 karma

I know you just be terrified but please please please get it checked out, the sooner it's diagnosed, the sooner you'll get treatment to get well! Keep in mind I'm a dramatic end of the scale case, many people with crohns live fine with just a tablet a day!

I was 13 and basically thought I had stomach cancer and had to tell my mum on boxin day as I didn't want to ruin Christmas, I left it so long I made myself iller than I ever needed to!

coreanavenger16 karma

Weird question but I've met a lot of people with ileostomies but never asked: after the healing, do you feel "lighter" or like part of you is physically missing, in a good or bad way?

Just wondering since the colon takes up significant space in the abdomen. Ah, this question will be buried and unseen anyways.

Jennibearrrr11 karma

I actually do! When my tummy isn't swollen it's actually so much flatter than before although just now it gets puffy a lot while it's healing up!

Swarlolz16 karma

I have metachondromatosis and I've had 18 surgeries for it, what is your favorite hospital food?

Jennibearrrr24 karma

JELLY. Oh sweet Jesus it's my favourite! I didn't eat any other hospital food though, I have a dodgy tummy at the best of times so my mum made home made soup and stuff for me to have instead!

quenterror16 karma

What would you say was the most difficult part of your journey?

Jennibearrrr61 karma

Wow, this is a kinda hard thing to talk about but it's actually been really hard for me because I've been getting my surgery while my brother has been diagnosed with oesophageal cancer and I've not been able to help him and do everything for him that he's done for me over the years.

He has a fantastic outlook on things though and said he wouldn't have been able to fight it if he was on his own but we like to try and spur each other on by having banter and winding each other up all the time.

As much as it's been awful to watch him go trough that I'm really glad he's got some comfort by having me go through a lot of the stuff he has like chemo, all the different tests, the feeding tube and major surgery so he knows completely what he's in for rather than worrying about what it's like!

One thing I have to say about it though is that this experience has brought us even closer than we already are and it's great to be able to be there for each other when we need a moan or a cry or laugh about the irony of our situation!

Astroman12915 karma

I have Crohn's too. Best of luck for your health :(

What were you most nervous about before getting the colostomy bag? I'm personally terrified of needing one in the future, but apparently, they're not as petrifying as most people think. Do you feel this way?

Jennibearrrr15 karma

Hey my fellow crohnie! I'm sorry to hear you have it too, it's a horrible disease!

I can honestly tell you that if you do need the surgery I got it's 100% not as bad as you think at all! I was in a total state before surgery crying and everything at the mention of it but now it's so crazy to think because it really is so easy to deal with! The first few days post surgery are pretty crap but after that you'll be surprised at how easy it is to deal with, I go to the toilet and I'm out in 30 seconds (a first for me!), I'm not in pain, I'm in remission now and I don't have the worry about it bursting anymore!

If you want to know know more people with crohns and ibd I'd say try joining the #getyourbellyout Facebook group, they're the most amazing group of people ever and they even do meets around the world and you can ask them anything about your worries because there's thousands of ibders and someone will have been through it before!

everythingsweetnsour12 karma

Have you seen the lingerie for people with stomas? Would you use one?

Jennibearrrr24 karma

I have! There's a company in Scotland called vanilla blush I think and you can even get their stuff on prescription here! I've not tried any yet because I haven't been out to shop much although I've found no issues with my current undies that I have, if anything they're better due to my surgery weight loss!

ahdguy11 karma

Did you ever try a faecal transplant - and if so, did it make any difference?

Jennibearrrr13 karma

I didn't sorry, wish I could. Be more help on this but I only recently heard about it for the first time and don't even really understand the process of it!

TheCanadianViking759 karma

What do you find to be the most effective painkiller given your situation?

Jennibearrrr11 karma

I'm currently taking tramadol and supplementing it with liquid morphine as needed. I've found that it's been the best painkiller for me although I'm trying to cut down on them now and I have some minor withdrawal symptoms however it has helped me tremendously the last 6 months!

iUseThings7 karma

When was the last time you pooped?

Jennibearrrr17 karma

It was like 7:45 on the 12 of December 2014. I thought I had to remember the momentous occasion

DrSidneyFreedman6 karma

Hi, my friend had this surgery a few years ago and is doing great.

there are certain things he shouldn't eat, but aside from that it's had little downside.

How has the difference been (health wise) pre/post surgery?

Jennibearrrr17 karma

If day the biggest difference pre and post surgery is the pain. I'm not constantly in tears or worried about fainting the next time I had a bad turn like I did even just before the surgery. I still have some pain but it's nothing compared to what it was! I also will hopefully be able to get fit and not need a wheelchair when I go out much longer, I can finally get the nutrients I need and start to eat good food and a varied diet with some light exercise. I plan on doing a 5k walk in summer to raise money for crohns and colitis uk and cancer research!

I hope your friend has a speedy recovery!

davesoverhere3 karma

Is Geoffrey a per enact friend, or do you expect to have additional surgery to put you all back together?

Jennibearrrr5 karma

Geoffrey's here to stay I think!! I only have my rectum and stuff intact because I want kids in the future but after that I'll get some surgery to get rid of my wee stump in my bum and make Geoffrey permanent!

chasupi2 karma

What medications and other treatments have you gone through prior to your operation?

Jennibearrrr5 karma

I've had elemental feeding through an NG tube, azathioprine, methotrexate, infliximab, humira and the trial drug andante which was cut by Pfizer last year. I've also had countless blood transfusions, iron infusions, vitamin b12 injections, the contraceptive implant which I had to get as a stipulation of the trial, basically every painkiller going, far too many meds I can't remember and surgery to remove 4 abscesses in the last 2 years because my crohns manifested in my skin. Oh and don't forget all the colonoscopies, endoscopes, camera pill tests, bariums, cts, mri's and weekly blood tests for 8 years!

BassofSea2 karma

Just wanted to say well done! I'm in a similar situation (Crohn's and ileostomy) it is a big plunge to take! Since I'm supposed I ask a question , what is your favourite flare up food?

Jennibearrrr5 karma

Hey friend! I'd say my favourite flare food is definitely Mac and cheese, I have no idea why it doesn't cause me bother when practically everything else does but a little of my mums macaroni makes a crappy day a good one!

Epicallytossed1 karma

We're you ever bullied in school? What is your advice for other people with Crohn's?

Jennibearrrr2 karma

I was bullied but it was more so because I'm taller than most girls at 5"8ish and I was so skinny rather than because I was unwell a lot, it was more to do with jealousy I think, it's funny though since my bullies all got chubby haha!

I'd say my advice would be to be proud of who you are, show your scars, show your bag, God knows you've done enough to deserve them so wear them like a badge of honour because you've been stronger than most people will ever have to be and you're still fighting the good fight!

hubda1 karma

I have ulcerative colitis and I'm finally getting rid of my colon in a couple months!

What's the most unexpected change (for better or for worse) that came from having this surgery?

Jennibearrrr3 karma

Hey! I really hope your surgery goes well and you have a speedy recovery if you ever need to talk my inbox is always open!

I'd say I was so surprised at how discreet the bags are! No one can tell I have an ileostomy unless I'm too lazy to empty my bag or I tell them, if you look on my blog that I've linked to, I think you can see that it's pretty well hidden!

rednucleus91 karma

Firstly, thanks for doing this. Pretty awesome of you. How well would you say your doctors have cared for you throughout your illness? I am a recent medical graduate and I like thinking about how we as doctors can do better in caring for our patients, particularly those with chronic illnesses such as yourself, not just the 'medical' aspect of it all, but the 'human' part as well. What would you say your doctors have done right? And what would you advise young doctors like myself regarding being there for our patients? I wish you the very best in your recovery.

Jennibearrrr3 karma

Thank you so much for all your hard work, I certainly wouldn't be here without the amazing doctors like yourself who have saved me so many times I can't even count!

Id say my treatment by my consultant, surgeon and all the on call doctors I've met has been fantastic, it really has! My consultant is like another dad, he laughs and jokes away with me from the minute I go in, gave me a huge hug when he found out my brother was ill, came to see me for lunch when I was an inpatient and bored and has asked me again to be a patient advisor to the nhs and other patients to help get the best treatment for others not only in my situation but in going from child services to adult services like I did!

My surgeon even went above and beyond re call of duty by persevering and doing my surgery laparoscopically even though it was in his opinion the toughest surgery he's ever done so I had a smaller chance of infection and a faster recovery even thought took him 3 hours longer than he expected!

My advice would be to treat the patients like a family member and treat them how you would want your family treated. I have felt so lucky that my doctors did that for me and I feel it gave me the best chance at a long and healthy life (hopefully!) since I would have given up fighting a long time ago if it wasn't for them