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Crohn's Disease Forum

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Nappy cream for applying after every toilet visit. Wash using a shower head rather than wiping as its better for your skin.

Not tried Miralax before (or gatorade for that matter) but the moviprep I had to drink 2ltrs of the stuff. It was just get it down as fast as possible and make sure I had a book nearby :p
 
Do you have any tricks to getting the stuff down? It's the hardest part for me without gagging or throwing up, yuck right?
 
You get the MiraLAX and Gatorade to mix don't you? I'm not sure what brands of cordial you have in the states, but in the UK we have Robinson orange cordial squash. Adding a shot of that to the mix can make it taste a bit better.
 
Yeah I mix a big thing of miralax into a jug of Gatorade and drink it over the day. Cordial? Like a flavoring? That might actually work, I can try it
 
If it's the taste try holding your nose (you will only be able to taste the 5 tastes), or have some strong smelling stuff like menthol near you nose to mask the taste
 
Okay i shall try it, I'm terrified of finding out bad news but it happens :/ do you have any other advice on helping crohns? I figured id ask to soak up as much info that I can.
 
When i had my first (and only, so far) colonoscopy i threw on some loud club music and pretended I was downing a bad tasting alcoholic drink. Worked for a few glasses lol.
 
Have you actually heard clubbing music these days.. I feel like retching even without a drink :p
 
Hello,
I have also just discovered this group and have been looking for somewhere I can talk to people around the same age range as me.
I am 20 years old and was diagnosed when I was 19 and at the end of my first year at university. I struggled with symptoms for a while but never thought I would have crohns so the diagnosis was a shock especially when I knew no one else my age with this condition.

I have had great support from my friends and family. Without my friends I don't know where I would be right now, they help normalise things for me. Although they can't relate directly they try their best to help me out on whatever I need, I can talk about any one my symptoms (even the gory ones) to them without feeling embarrassed!

However, It would be really nice to talk to people who are experiencing what I am and can give first hand advice! So I am thrilled I've found this group :)
Xx
 
Alicat44, you might have a bit of a bug? If your on any medication that lowers your immune system like azathioprine, you can have an increased chance of picking up bugs.
 
Justayounglad, I've been dealing with a low fever for awhile on and off, it's hard to tell if it's from being sick or my crohns? I have felt like I have had a slight cold but idk if that would cause a fever do you? And I am on Humira
 
It can be to do with both really, Crohn's has given me high fevers a few times.

A small story to share, one time I was in hospital and my temperature sky rocketed. They thought I might have had sepsis, a bug in the blood from the IVs. I had a temp of 38.5C (101F), high heart rate, 120. I was started on really strong antibiotics and blood cultures sent off to find out what bug I had. 24 hours I was back to normal, blood cultures showed no bug. The consultants presumed it was Crohns related, that Crohns caused the fever, they said it can do that.

I've been on Humira for about 2 years. Stopped recently as I had to go for surgery unfortunately. But while on Humira I did get a few more bugs than normal.

If you have a fever for more than a couple of days I would go your local doctors. How often do you get your bloods checked?
 
Wow that's crazy, I used to get super bad fevers to where you shake when I was in the hospital a long time ago. I think it might be the Crohn's unfortunately because It's been happening a lot lately /: if you don't mind me asking what kind of surgery do you have to have? I get blood tests like every month or so
 
I had a laparotomy resection (basically they cut me open through the abdominal wall, as a oppose to using keyhole surgery). It was to remove my crohns that had got really bad and caused a total blockage. So then there was nothing that medication could do, it was entirely a pluming issue, a kink in the hose pipe.
 
Lottie93 said:
Hello,
I have also just discovered this group and have been looking for somewhere I can talk to people around the same age range as me.
I am 20 years old and was diagnosed when I was 19 and at the end of my first year at university. I struggled with symptoms for a while but never thought I would have crohns so the diagnosis was a shock especially when I knew no one else my age with this condition.

However, It would be really nice to talk to people who are experiencing what I am and can give first hand advice! So I am thrilled I've found this group :)
Xx
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Hello! and Welcome!
 
I used to be on 1 injection every 2 weeks now it's once a week, I'm scared there going to put me on a shot twice a week because I've been feeling shitty. Hopefully there's another solution
 
Sorry using my British words, fortnight = two weeks. I don't think they will increase your injection beyond one every week. You can increase the strength though, they come in 40mg and 60mg liquids. Do you think you are you feeling poor from Crohn's flaring then?
 
Haha it's okay I was wondering what you meant, I think I'm on 40 mg right now? Yeah, I had a colonoscopy in October and it was pretty bad .. And so they put me on 6mp with my Humira to try combination therapy and I'm starting to feel sick :/ I've also been put on this antibiotic xiafian recently
 
Alicat44 said:
Haha it's okay I was wondering what you meant, I think I'm on 40 mg right now? Yeah, I had a colonoscopy in October and it was pretty bad .. And so they put me on 6mp with my Humira to try combination therapy and I'm starting to feel sick :/ I've also been put on this antibiotic xiafian recently
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I'm sorry :(. They are powerful drugs. Just one of them drugs on their own can cause sickness as a side affect. After taking my weekly humira I would feel nausea for the next day or so.
 
How does everyone deal with the temptation of drinking at parties? (assuming alcohol hurts your Crohn's)
 
I usually just have a glass of wine because it doesn't make me sick. To avoid the hard stuff I just remind myself how sick I got and how much pain I was in the one time I tried it.
 
smack116 said:
How does everyone deal with the temptation of drinking at parties? (assuming alcohol hurts your Crohn's)
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I simply just remember what will happen if I do drink, generally alcohol doesn't upset me (as long as I avoid gluten) but if I'm having cramps it will make them worse, if I'm taking medications then I always try to check with the prescribing doctor or here if I know that there is a social event coming up where I may like to drink. I'm not generally a big drinker anyway , I drink maybe 5 Times a year on average. The key thing is moderation, don't go downing 6 pints at one time. Most people seem to find things like wine and spirits like vodka to be easier on the system than beers and ales so maybe that's a good place to start. Also, non alcoholic beers are available in a lot of places, and you can even get gluten free larger and beer if you think that may be better for you.

In addition, I find eating just before or while I'm drinking helps to keep my tummy settled.
 
I went out NYE and just drank soft. I was probably the only one in the whole bar drinking soft. I dont mind though, I still enjoyed it and had a fresh New Year's Day.
 
Alicat44 said:
I'm having my 4th or colonoscopy in the past year again in January.. I'm extremely nervous that my doctor is still going to find just as bad inflammation as last time :( I really need some encouraging words and mabe if anyone has any tips to making the miralax Gatorade prep any easier?
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To the Miramax/dulcolax prep. I personally cant taste it. Unless I mix it with yellow Gatorade then its horrible tasting. I usually mix it with apple juice and let the miralax dissolve completely and it literally tastes just like apple juice. It might help to have the drink your mixing it with to be cold or chilled. I noticed i can taste it more when the drink is warm. Also, I live in sunny Florida too! :)
 
Has anyone ever had a iron infusion? My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements. The make me so sick! I read that you can have flu like symptoms for up to three days afterwards. Has anyone gone through one of these infusions and did you have any side effects?
 
hingrum said:
Has anyone ever had a iron infusion? My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements. The make me so sick! I read that you can have flu like symptoms for up to three days afterwards. Has anyone gone through one of these infusions and did you have any side effects?
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Hey hingrum! Yes Ive had an iron infusion before while in the hospital, I can't tolerate the oral ones either makes me throw up. Anyways when I got mine the only real side effects I had were feeling like I got hit by a truck for a couple of days and my pee was orange and my stool was really dark because they pumped so much into me. Looks kinda cool in the bag its dark but yet an orangey red color. Oh I had a weird taste in my mouth the day it got infused but that's it. It was well worth it.
 
^Yeah. Kinda like, trust me not my choice to have this and thus be here. Sometimes I think they are glaring at me for potentially adding to the wait time, even though I have to see my gi as much as they do I'm sure.
 
hingrum said:
Has anyone ever had a iron infusion? My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements. The make me so sick! I read that you can have flu like symptoms for up to three days afterwards. Has anyone gone through one of these infusions and did you have any side effects?
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I used to get terribly sick from iron tablets.

I've had 3 iron infusions over two years, and they are really great. You leave the hospital feeling a new person. The amount of iron you get will depend on your weight and target hemoglobin. To give you an idea, my weight was 45kg and my hemo was 5.

The iron bag was about 1000ml for me, I think I had 100ml very fast over 15 minutes at the start of each infusion to check for any immediate reaction, and the remainder over 8 hours. I didn't experience any inital reaction. I believe they are looking for fast bp, high temp, problems breathing. A reaction the iron is quite rare but it needs attention.

I did experience a heat wave, it felt like all my blood vessels where opening up. I could see the blood in the veins for the first time. After about 2 hours into the infusion I was sick a few times. It did pass though. I had no side effects upon finishing the infusion.

It'll definitely make you feel better in the end! Best wishes!
 
Frozen girl yes! Haha they just awkwardly look at you... Or they sleep since its so cold in there. I feel like I live at Florida medical between all my GI and rhumey appts.
 
Thank you all for the advice with the infusion! I am excited to feel a bit better! Hopefully the side effects won't be too glad. I am glad I know what to expect now.
 
Nini, I wish I could sleep while waiting. Though with my cold it would probably be rather unpleasant for everyone else as I cough and sniffle all over myself, lol.
 
Oh my god. I literally did that the last two visits I had because bronchitis and couldn't breathe worth a crap and my nose and throat were going off on there own. and because its like 40° in there I turn ghostly white and kinda blotchy and my nails turn purple and my bp gets super low like I should be dead. Its quite the sight lol I look like I'm gonna faint. And then my bp goes back up when I meet the dreaded scale haha :ybatty: :pale: :mademyday: :(
 
Haha. Aww. Glad you are better now. Oh the dreaded scale, lol. Me and it seem to have a disagreement. It says whatever I don't want it to.
 
Same here, I feel sometimes that the GI and rheumy scales are worse than the one at home. Theyre always higher. Then my GI thinks I'm doing good because I'm gaining and I remind him his scale shows higher than mine and then I think he feels disappointed by it haha oh well. The rheumy scale I'm okay with being higher because then I get the full 10mg of remicade unlike the 7.5mg I got last time because my weight was under the "10mg limit" ugh lol
 
Just a young lad,

Do you know what meds put you in remission and were you on any preventive/maintenance meds the ten years you were in remission. I hope you are feeling better now. Congrats on graduating.
 
Rose said:
Just a young lad,

Do you know what meds put you in remission and were you on any preventive/maintenance meds the ten years you were in remission. I hope you are feeling better now. Congrats on graduating.
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When I was 11 I had 5-6 doses of Infliximab (trade name, Remicade) and then I was in remission for 10 years. 5 of them years with no medication because they was nothing there to treat / maintain. Them 10 years were great, I went up to 12st, with no symptoms.
 
They never gave you prednisone? I am interested on how each doctor treats initial/subsequent flares differently.. I am so happy that you were in remission for that long and hope you can go another ten years. My son has crohn's colitis and we are battling to get him into remission. What med do you take now? Thank you so much.
 
Yes I did have Predinsolone, its a bit rough, but I can remember most of it, in order of treatments:

10-13 years old
Colonoscopy confirmed crohns
Prednisolone (4-6 weeks)
Ensure liquid diet (2 months)
azathioprine (6 months)
Infliximab (8 weeks)

14 - 23 years old in remission

23 - 24 years old
Ensure (2 months)
azathioprine (8 months)
Humira (18 months)
Crohns tissue healed, leaving behind scar tissue causing a total blockage
CT/MRI confirmed stricture
Surgery
Now (3 months post op)

Prednisolone caused bad side effects for me when I was a kid, it was horrible, so I avoided them the second time round. Also I had Humira this time as the doctors said the body can reject Infliximab after using it for a period of time. So to avoid that possibility I ws give Humira which is a drug with similar properties.

Wsh your son the best! Hope it gets better for him, and feel free to ask any questions about my experiences.
 
Just a young lad,
Thank you so much for sharing your med info. and support. It means more to me than you will ever know. Hope all is well with you, too. I have switched gastro doctors from pediatric to adult. My son is 16. Hopefully this doc will help me get him on track. Do you follow any special diet?
 
I'm feeling really low right now, I can't shut off the worrying about my disease. I had a colonoscopy today and it went well, but I have to meet up with my doctor next week to discuss my options.. I'm so scared and need someone to talk me out of it..
 
All you can do is try your best to take care of your body... no amount of worrying will change your disease. It's all about what you eat, what you drink, and what you think! Hope for the best. Plenty of people go into remission all the time with this disease. Try yoga, meditation, and seek a counselor if you can't seem to shut off the noisy thoughts. They can give you some tips and tricks.
 
Thank you smack116, I think I need to really push myself to eating healthy and doing good for my body. I just have a disbelief deep down inside that it would help but I'm trying to stay positive. Do you recommend any vitamins or tricks? I also scheduled my first appointment to see a psychologist next week and I've had this disease since 2007. It feels like so long.. Lol
 
Alicat44 said:
I'm feeling really low right now, I can't shut off the worrying about my disease. I had a colonoscopy today and it went well, but I have to meet up with my doctor next week to discuss my options.. I'm so scared and need someone to talk me out of it..
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Oh I feel so bad for you hun! I just want to give you a hug:ghug: I know it sucks, but you will get better one day and your life will not always revolve around IBD. There will be good times, yeah? Keep your chin up and know that you are most certainly not alone in this fight. You can talk to us anytime, ok?
 
Alicat44 said:
Thank you smack116, I think I need to really push myself to eating healthy and doing good for my body. I just have a disbelief deep down inside that it would help but I'm trying to stay positive. Do you recommend any vitamins or tricks? I also scheduled my first appointment to see a psychologist next week and I've had this disease since 2007. It feels like so long.. Lol
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Yeah, I know what you mean about the disbelief. I think your psychologist will help. Deep breathing helps me a lot with stress and negativity. So does getting out in nature and hiking.

I also believe that coffee, overeating, alcohol, cigarettes, and lots of sugar are really bad for my symptoms. It's noticeable. But everyone is different.
 
this disease fkn sucks. problem after problem. it never ends.

Im tired of hiding in my room from my once glorious social life. Im a former shell of myself.

i hate going to doctors and being told what am i doing there "your too young to be here"
 
Hey fellow young'ns. Feeling a little bleak.. Just wanted to say hi to people who might get it. I'm currently in NY visiting my boyfriend (long distance relationship...Already a strain...). I started prednisone right before I left and I think it's made me sort of depressed... or just sort of "off" feeling...And then being in an amazing city with my amazing guy and just ending up thinking about my illness most of the time is pretty depressing too. I guess I feel sort of envious, knowing when I leave he goes back to this vigorous, healthy academic and social life...And I'll go home and just feel like a bit of a mess. And jealousy is a pretty gross feeling.
Anyway, a lot of this trip has been wonderful. I'm just having a moment.
 
Magnolia24 said:
Hey fellow young'ns. Feeling a little bleak.. Just wanted to say hi to people who might get it. I'm currently in NY visiting my boyfriend (long distance relationship...Already a strain...). I started prednisone right before I left and I think it's made me sort of depressed... or just sort of "off" feeling...And then being in an amazing city with my amazing guy and just ending up thinking about my illness most of the time is pretty depressing too. I guess I feel sort of envious, knowing when I leave he goes back to this vigorous, healthy academic and social life...And I'll go home and just feel like a bit of a mess. And jealousy is a pretty gross feeling.
Anyway, a lot of this trip has been wonderful. I'm just having a moment.
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Sending you hugs!
 
Just figured out the support group pages.
So glad to have found this forum.
Attended one support group and it just wasnt for me. Not really a young crowd and just felt out of place.
Been using this forum and have probably read 15 different books at this point about Crohns and IBD since I had never heard of this disease before up until diagnosis.
Will definitely be using this forum a lot.
 
Amaze said:
this disease fkn sucks. problem after problem. it never ends.

Im tired of hiding in my room from my once glorious social life. Im a former shell of myself.

i hate going to doctors and being told what am i doing there "your too young to be here"
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I'm the same exact way. I feel ya. To the drs. Thing that and the "your doing fine" speech. :ybatty:
 
Feeling pretty down today. Had a job interview on friday for a job that is IDEAL for me, and exactly what I was after and it seemed to go really well.

But on tuesday I have an ultrasound and CT scan to investigate a fistula i have between my intestine and bladder (Have had poop in my urine many many times in the past couple of months so it's definitely there). I was jjust reading about the procedure for treating this and apparently it's a bowel resection at best. I'm really scared that this is going to get in the way of the rest of my application process and taking the job if they offer it to me.

If that happens i'll genuinely be devastated because i havnt seen any jobs like this anywhere else and i really think i have a good chance of getting it. Except for the fact that my good friend, crohns disease, is going to do whatever he can to fuck it up for me.
 
@DamnitCrohns

I got denied for a career position I been fighting for for at least 5 years because of crohns. I still cant get over it. hopefully you have better luck than I did.
 
Amaze said:
@DamnitCrohns

I got denied for a career position I been fighting for for at least 5 years because of crohns. I still cant get over it. hopefully you have better luck than I did.
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Damn that sucks, i'm truly sorry to hear that Amaze. I really hope that somehow it doesn't get in the way for me but I can't see that happening. I almost feel like it would be better if I got turned down for the job rather than being offered it only for me to end up having to reject it.

Crohn's has done such a great job of destroying all of my plans in life ever since it started.
 
Glad im not alone on the job front thing. My crohns has decided to be very super active and surgery didnt even stop it from flaring right after. Ive lost many job opportunities because of this blasted disease.
 
@DamnitCrohns

"I almost feel like it would be better if I got turned down for the job rather than being offered it"

- I was wishing the same thing.The worst thing about my situation was that I received a denial notice and my Crohns was listed as the reason why.



@nini_mini
- I hear that, been denied and/or I refused to take jobs because of this dang disease. My family underestimate my disease and always get on my case for losing my job recently and not being able to find another. Now I really do not know what to do with my future :/
 
Amaze. Im literally in the same position. I jist dont know what to do. I havent held a job in a couple yrs because of it and if I do its only for a few months tops because ill flare and wont be able to work. And now im recovering from surgery and I keep flaring so I really cant do anything. I want to be a nurse and move out I just dont know how ill do it, its aannoying and a challenge.
 
Amaze said:
@DamnitCrohns

"I almost feel like it would be better if I got turned down for the job rather than being offered it"

- I was wishing the same thing.The worst thing about my situation was that I received a denial notice and my Crohns was listed as the reason why.


@nini_mini
- I hear that, been denied and/or I refused to take jobs because of this dang disease. My family underestimate my disease and always get on my case for losing my job recently and not being able to find another. Now I really do not know what to do with my future :/
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They rejected you because you had Crohn's? Unless it was something specialised, were you need to be really healthy for the job then that's not fair!
 
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Hey guys, in the same position here..

Crohns made me drop out of uni after I worked really really hard to get in.. Because of the symptoms (undiagnosed) I found concentrating at school/college (kind of like our high school but non compulsory and you can do a wider range of courses and get diplomas etc) but i still managed to pass every exam and every piece of coursework and then I had to take a year out because I was supposed to be having major jaw surgery which didnt happen. I finally got there.. was starting to settle in, loving my course, making friends, getting the coursework done when everything went belly up (literally). I ended up being admitted to hospital 3 times, and then having to leave, just 3 months after starting.. I was so gutted.

Then, last summer, after surgery, I had a shot at going back, my uni had held a place for me, I got all the way through to a health assessment.. and BAM! failed.. and I have been signed off work ever since, my doctors are giving me what we call a rolling sick note, where every month they sign a form to say Im not fit for work. This will keep going until I see a rhuematologist and they tell me if i can/cant start working and if i can, what my limitations will be.

I should point out.. the course i was doing was a paediatric (childrens) nursing course and you really do need to be fit, your on your feet 12-16 hours a day running around.

I have never had a job, every one I've applied for has a health questionnaire that I answer with at least 75% "yes" and I never hear back.
 
I haven't been denied a job because of my Crohn's, although I did end up turning down one that I was offered because of it. My last employer was aware of my condition before I was hired as he was a family friend, so he was decently understanding. My current manager was told about my Crohn's before I was hired (apparently one of my references told her… a little confused as to why…) but it turns out she has it as well (although she's actually never had symptoms from hers and only found out because she was diagnosed with another condition as well). So far, it hasn't been an issue. Most of my problems at work are fatigue-related, but I've managed to do okay. Unfortunately, my fatigue and my apparent arthritis seem to be getting worse, so we'll see how things go.

I'm also worried about school. I might end up taking this semester off, because I'm in a tricky financial position and would have to cut down my hours to go back (plus I'm really, really late in scheduling - I need to decide this by tomorrow), which would have a huge negative impact. However, I'm already years behind where I should be and the idea of another semester of no progress really bothers me. I'm probably on academic suspension and have had my financial aid revoke anyway, though - I'm too afraid to check. My school is extremely uncooperative and difficult to get ahold of (and has terrible professors), so while some failed classes are my fault, some are theirs as well. I need to transfer to get the degree I need, but unfortunately, I'll also have to move to do that… which I can't do because of my financial situation… so at this point, I'm not sure that a semester off is really what's hindering me.
 
I am scared about starting a new job with the unpredictability of my flares and mainly my severe fatigue and dizziness. I wish I could be my own boss or work from home but there aren't too many options there that are suitable for me.

Mostly I just feel that you guys can probably relate that I feel like crohn's has robbed me of my youth. I got diagnosed in college just when I started to get the hang of things and enjoy myself and ever since it's been downhill. I am envious of others who can go out eat, party and live life without thinking twice about the consequences. I feel like every minute of my day is calculated and mostly can't do much of anything I would like to. I'm a young adult prisoner to my crohn's :(
 
I've been with my current employer for 13 years now. However, I've had many different managers, people in charge, fellow employees, etc. My management and everybody who needs to know about my IBD knows about it. However, I don't tell anyone who needs to know until after they've been working with me for awhile. This way they'll know me for how I work, not me because of my IBD.

I have had trouble during work with my flares. Got sent home once because I was in so much pain. But, for the most part don't let my IBD keep me from my job. All I can do is my best and that's all they ask. My fellow employees won't give up on me till I give up on myself.
 
I've had my current part time job for a year and a half. I work about 20 hours a week. I told one coworker about my UC (I was in the worst of a flare and in constant pain at work, which despite my best efforts is tricky to hide) I told my manager only when I needed to justify asking for Christmas Eve off when I had previously said I would work it, due to a last minute MRI. Even then I just said I had a 'chronic autoimmune disease' wasn't specific.
 
Sorry to hear that you guys have also been struggling job-wise.

I passed the interview and now have a follow up interview on thursday morning. My ultrasound and CT scans for the bowel-bladder fistula are tomorrow. Will be interesting to see how this week plays out...
 
-Job note. My dad texted me if I could do some manual labor for the next three days as he needs something done at his work.

-Side note. He asked me even though im flaring and it feels like rocks and razor blades going through (my resection site and whats left of my ascending colon and part of my descending and sigmoid colon) pretty much both my sides going in L formations facing each other. And he knows im flaring because I spent most of yesterday complaining about it. :ybatty: :yfaint:
-Back to the job note. Depending on what it is he needs done I might muttle through a few days of it. But if its something legit im not sure I can handle an entire day of manual labor forom 830 to 5. Or im going be In serious pain all day and will be taking many breaks either way.
-any thoughts on this idea? :poo: :voodoo: :runaway:
 
@nini_mini - Did you end up doing it? manual labour type work would be awful for me now. Sitting at a desk ad working is fine for me - the pain and fatigue affect me but can largely be ignored. But even the idea of waiting tables or stacking shelves sounds like hell for me, nevermind tough manual labour.


Question for the young adults of the forum:

Do you live with your parents? If so what are your thoughts/plans with regard to moving out? and if not, when did you move out and how has your crohns affected you in this regard?

I've only finished uni recently and have fortunately found a job that is close to home so theres no need for me to move to another city etc. Within this year i'd like to have moved out though as theres not much to do around here - a small village about 35 minutes from the city (by train) - and my social life has been minimal recently with the combination of getting crohns, living with my parents, and my friends who live around here all still being at their various universities around the country.

But the prospect of moving out has become less attractive due to this illness - low energy, pain, discomfort etc are one thing at home where my mum can do things for me like washing my clothes, even cooking and shopping etc but doing all of these things for myself when i'm ill just sounds horrible. I'm not sure if that's as lazy as it sounds or if crohns is a reasonable excuse to think that.

Let me know your thoughts guys and girls.
 
I am in uni living with my parents. I'd like to move out in the next few years. The prospect of being alone is really scary though. My parents do a lot for me and as someone recently diagnosed I wanted the support,hopefully when I'm out of flare I won't need the support.
 
I left home permanently at 21 when I got married. Throughout these 14 years there have been times that it's been a roller coaster ride with my IBD. But, admit that I've never been alone other than maybe a night or two off and on when my husband has been working away from home.

Don't blame you for wanting to be on your own and independent. That's a wish everyone wants. But, you'll know when the time is right for you. xxxx
 
I do not live with my parents. Unfortunately, that isn't an option for me. I moved out when I turned eighteen. I stayed with my boyfriend at the time for over a year. When that relationship ended, I moved in with a friend, who then became my current boyfriend. Because my work hours are limited due to my health, I can't afford to live on my own.
 
@damnitcrohns- no I did not. My flare has been knocking me dead this past week to the point where im not eating a lot and I slept 90% of today because I just feel like shit, my joints are killing me which makes me not want to move and my flare is making me tired and in pain so Ive been on tramdol and half a hydro today. Oh and I haven't taken my pentasa this past couple weeks because my heart palpitations are going effing nuts so I'm not gonna add to it. Lol its been a very long painful two weeks.
Also I live with my rents. Sigh. I have plans to move out but I can't until I get better and be able to hold a job for longer than a couple months. Lol and ha! My mom helps do my things too when I'm crappy. Wash clothes, shop, etc. So yeah I feel its a reasonable excuse, and well we feel crappy and can't do it ourselves.
 
Weatherwax said:
Hey guys :)

I'm 23. I graduated from uni with a First in summer 2012, feeling fine. In the autumn I got a place on a really good graduate scheme, got rid of a terrible cheating boyfriend I had put up with for the past three years and moved into my own flat. In January 2013 I started dating the most amazing man who I had met at work - like, the kind of relationship where from the first time we went out I felt like I'd come home, like he was the person I was supposed to be with all along. I remember my friends saying they'd never seen me like that about anyone. I hadn't had a great life up until graduating (difficult relationship with parents in my teens which caused self-confidence problems that took a long time to shake off, a run of crazy housemates at uni and other stuff) and I was so happy that I finally had everything I'd worked hard for for years. Ready to have a career, travel, do everything I had always wanted to do and never been able to.

Then I started getting ill. A few months after I started dating my partner, I was suddenly getting screaming stomach pains, D 3-10 times a day, fatigue that meant I couldn't walk to the corner shop without needing a nap, being sick every five minutes, fissures and fistulas, all the usual fun. I spent the next year in and out of GP surgeries and hospitals, trying to find out what the hell was wrong with me. Eventually I was told over Christmas 2013 that I had suspected Crohns - my gastroenterologist is '99% sure' that's what's wrong with me. I had a CT scan last week to confirm and should be starting steroids next Tuesday.

I guess many of you must feel the same way - so frustrated and angry that this disease has ruined everything when you've only just started out in life. I can't do my best at work and show what I can really do, because I'm off sick half the time and when I am in I spend a lot of my time too tired or pained to concentrate. I can't go to long meetings for the usual reasons. I can't learn to drive, or travel, because I don't have the energy - or the money since I haven't been able to progress from the graduate scheme I started last September. I now live with my boyfriend, not because we felt it was the right time to move in together, but because he saw that I was not coping living alone and trying to pay for my flat when I was working reduced hours due to illness. He has said to me that he feels we've taken things a bit too fast, even though he still loves me, and I know seeing me so ill is stressing him out. I don't feel attractive because I'm absolutely stick thin, have dark circles under my eyes, fistulas and other gross things galore, pale crappy skin and half my hair has come out, which has affected our intimacy.

I feel guilty for stressing him out and like he was sold a relationship with someone fun, chatty, pretty and into all the same activities as him, and he's stuck with a boring person who never looks good and spends all their time sleeping or being miserable. I feel so angry that this disease has come along and snatched everything away just when I thought I had built something amazing.

Sorry for the rant, but I needed to vent to someone and I thought you guys would understand more than anyone IRL.
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I feel your pain. That really sucks! :( - On the positive you've found someone who really loves you. Hopefully you can find the right treatment and be on the mend soon!
 
Weatherwax- I'm sorry your going through all of this, but you have a to stay positive. That's the most important thing! I was diagnosed in 2007, and have been through hell trying to get myself healthier, but I finally have realized it's nothing to be embarrassed about or ashamed of. I got diagnosed in a critical part of My life when boys were just starting to be a part of it. I didn't even hit puberty till I was in 9th grade, and that only happened from putting a G tube down my nose into my stomach by myself so that I could get nutrition to grow. But anyways, my point is that you can never give up. You have to find yourself a doctor you really trust, you can't be afraid to take risks with certain medicines(every new one I've tried has helped more then hurt me), and take care of yourself. Your partner will understand, your going to get better, you may feel unattractive now but it is only a phase. If your partner doesn't understand your better off without him. I'm here if you have any questions or just need someone to vent too :)
 
@WeatherWax I can completely relate to having crohns get in the way when life seemed to be going in a great direction. I got sick 1 month after i finished my final year at uni (if theres one thing im thankful for, its that it didnt come a month earlier) - I had an awesome gap year planned and everything was laid out perfectly.

Instead I'm living with my parents, working, but having almost no social life whatsoever for various reasons, crohns being one of them. And after about 6 months of being ill, i still dont think i've fully accepted that this is a permanent part of my life now.

I feel like things can improve with time though and we'll be able to get our lives back on track, or at least close to the track, over time. I still havn't found remission yet but i'm probably going onto azathioprine (imuran) and/or infliximab (remicade) in the next few weeks so hopefully that will sort me out.
 
Amanda89 said:
Hi danny, sorry to here you and your mum aren't well.is it just a normal doctors appointment you have on the 4th or is this with your GI?
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It's with my normal doctor but it will be my first time seeing him.
My old doctor found out he has brain cancer and is no longer practicing.
I will be seeing a GI doc after that :)

Hope you feeling good today, nice to meet you!

-Danny
 
Has anyone had to do hydrocortisone enemas? How long did it take to see results? And did they make your knees hurt ? Owch
 
I'm 25. I've was quite active on this forum up until a year ago. For the past three years, and through four docs, I've been diagnosed three different times with Crohns. I saw a doctor last year who swore up and down I didn't have it, and pulled me off all my meds. Needless to say as soon as I saw a new doc a month ago, and had new scans, colonoscopy and blood work I was permanently diagnosed, and will be starting Humira this week. My first two years of disease were quite mild.

I survived and did well on Pentasa for a few months, then added Entocort. I then joined the prednisone world. I had to switch doctors when I moved, and came across a great GI who was quite conservative... Well maybe too conservative looking back on it. I'm paying dearly now, with very severe inflammation and very active disease. My liver is shot to hell at this point as well, and with starting Humira, will be doing bi-weekly liver function panels.

Ten years ago I had a traumatic brain injury due to a car accident. I've felt like a test subject for most of my adult life, and have been hesitant to out more crap in my body. At this point I have no other choice. I'm used to being abnormal, used to being the sick girl...my friends and family and even co-workers don't question my bad days, medications, hospital admissions. I've become numb to having a chronic disease. In many ways, I'm so thankful to have such acceptance, yet it still can get frustrating.

Some days it's hard differentiate between TBI and Crohn's issues..it's a constant cycle. Being 25, the only real issue that I've had socially, is the ability to date. Even at 25, I've experienced more pain, more issues then some do in a lifetime. I come with 'baggage' . Emotional, physical baggage and in your early 20s not many people want to deal with it.
 
nikimazur said:
I'm 25. I've was quite active on this forum up until a year ago. For the past three years, and through four docs, I've been diagnosed three different times with Crohns. I saw a doctor last year who swore up and down I didn't have it, and pulled me off all my meds. Needless to say as soon as I saw a new doc a month ago, and had new scans, colonoscopy and blood work I was permanently diagnosed, and will be starting Humira this week. My first two years of disease were quite mild.

I survived and did well on Pentasa for a few months, then added Entocort. I then joined the prednisone world. I had to switch doctors when I moved, and came across a great GI who was quite conservative... Well maybe too conservative looking back on it. I'm paying dearly now, with very severe inflammation and very active disease. My liver is shot to hell at this point as well, and with starting Humira, will be doing bi-weekly liver function panels.

Ten years ago I had a traumatic brain injury due to a car accident. I've felt like a test subject for most of my adult life, and have been hesitant to out more crap in my body. At this point I have no other choice. I'm used to being abnormal, used to being the sick girl...my friends and family and even co-workers don't question my bad days, medications, hospital admissions. I've become numb to having a chronic disease. In many ways, I'm so thankful to have such acceptance, yet it still can get frustrating.

Some days it's hard differentiate between TBI and Crohn's issues..it's a constant cycle. Being 25, the only real issue that I've had socially, is the ability to date. Even at 25, I've experienced more pain, more issues then some do in a lifetime. I come with 'baggage' . Emotional, physical baggage and in your early 20s not many people want to deal with it.
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It's hard to read how much you have been through, I'm glad your such a fighter! So do you feel as though the doctor that was too conservative is to blame for any of it getting worse? We are the same age, and while we are going through different things, I am here if you need to talk, feel free to message me. Hope your feeling ok today!

-Danny
 
Hi Danny, welcome aboard! We're are all on this terrible adventure together. I wish you the best of luck that your situation improves, I've been right were you are. I can also relate to going to A&E only to get a drip, pain killers and sent on my way (in my early days). It can be frustrating.

Anyhow, always ask away if you have any questions, I've been through hell the last 2 years. Finally on the up, but in that time I've felt many lows, been on far too many drugs and the recently surgery. I don't let it keep me down though, keep fighting!

PS. Your daughter looks cute. I bet she's a big star in your life!

----------

Hey niki, I know how it feels being so active, 'parties, hobbies, active in sports and then to become so ill. I got I'll straight after my graduation. So I went from a very active uni life to being curled up in agony in my bed for days. It sounds like you've gone through a lot and it's hard to take at such a young age. I've questioned too many times 'why me', but I've gotten past it and accepted this is who I am and I'm going to turn a negative into a positive (some how).

I've was on Humira for 12-16 months. It was so long I can't remember exactly. It works well. If you have any questions about the drug feel free to ask. Also don't worry about the shopping list of side effects. Be aware of them but get worried about them too much. They have to state every possible side effect legally but they are most rare, especially the life threading ones.

Also you will find someone who likes you for who you are. Everyone has baggage but just in different sizes. You look like a good looking girl, and once your Crohn's gets more in control you'll feel more confident about engaging in more social events and meeting new people. Wish you the best in getting well!
 
I just turned 21. I was diagnosed with crohns when I was 14. I have not been in remission yet but hopefully I will one day. I'm trying to get into school but it never seems to be the right time. I've been dropped from 2 colleges already because I'm missing to many days. My pain levels have been. Very high lately and I'm always so tired. Is there anyone else who is having problems with school or work because of their crohns?
 
shena1993 said:
I just turned 21. I was diagnosed with crohns when I was 14. I have not been in remission yet but hopefully I will one day. I'm trying to get into school but it never seems to be the right time. I've been dropped from 2 colleges already because I'm missing to many days. My pain levels have been. Very high lately and I'm always so tired. Is there anyone else who is having problems with school or work because of their crohns?
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Have you talked to disability services at your schools? My school has an attendance policy (many don't) so my grade starts going down if I miss more than two or three days. I'm able to get this waived, so attendance doesn't effect my grade. If I do miss class, I simply email my professors and they let me know what I missed.
 
Hello Shena

I'm in the UK, but when I was at uni, my lectures were very understanding and although they had strict attendance rules for my course, they did allow me to miss much more time than normal, including compulsory sessions. All I had to do was email lecturers to let them know why I wasn't there. When I left, it was a mutual choice, we felt it was better for me to get things under control away from the stress of uni ( I was on a nursing course, stressful and physical) and they made it clear that me leaving wouldn't affect future applications to that uni... If you speak to the schools and explain your situation, you should find that you'll get much better support. Good luck!
 
Thanks Sarah. I have tried talking to my teacher but she says she can't do anything about it because attendance is a big part of the class.
 
@valleysangel92: Thank you. I haven't tried talking to the school. Only the one teacher and she wasn't much help.
 
shena1993 said:
Thanks Sarah. I have tried talking to my teacher but she says she can't do anything about it because attendance is a big part of the class.
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Any school should have a disability services office. You can contact the main office and ask who you need to talk to. They just need documentation proving you have a medical condition. :)
 
Hi everyone :)

Been using the forum a while now but just came across this support group! It will be nice to speak to people the same age going through the same things.

I'm Kelly, 26 yo female and was diagnosed around this time 4 years ago. I was lucky in a way, my symptoms were tummy pain, dreaded D, flushes, nausea etc. I went to my gp's office and saw a student doctor, who knew what it was straight away and immediately started me on 40mg pred, and referred me to a GI. While waiting on the appointment, the symptoms came back bad and i was admitted to hospital for the first time, where i had a signoidoscopy and was diagnosed officially.

After more pred, i started on aza. They worked, so well in fact, that after 2 years i stopped taking them. Then surprise surprise i got ill again. This flare has lasted now since last April. I tried to start back on Aza but this time it didn't work. I have been on pred now for 10 months. Wish i could take it forever as its the only thing that makes me feel semi normal.

I had a colonoscopy under GA on 6th January, where my surgeon discovered 5 fistulas (said i had an ass like a watering can). I had two setons placed on rectovaginal fistulas. This has affected me so much. I have been off work since Xmas eve, sex life is non-existent, I'm constantly draining and having to wear sanitary towels. I'm paranoid in case i smell. Luckily enough i have an amazing boyfriend who i live with that really looks after me :) doesn't mind my horrible smells, getting up in the middle of the night or being unable to socialise etc. Hes great :) i have an appointment with my new GI 25th Feb, hopefully get started on Infliximab soon.

The things that get to me most about having CD - i cant do anything i used to be able to. I watched a tv programme the other night where there were young girls drunk and dancing on a bar, and i broke my heart crying because I'll never be able to do that again (i don't even want to, don't know why it bothered me so much!)

I'd love to get all dressed up, have a few drinks and go out dancing again. But right now i just cant. My crohns symptoms are ok just now thanks to pred, but my setons are so painful i end up spending most of my time in bed, doped up to the eyeballs with tramadol.

My work are now being ok with all my time off. They were a bit funny last year, but i printed out a lot for my manager and she seems to understand a bit more now. I have also given my immediate team members all the gorey details so they understand a bit more. I don't hide my CD from anyone. As hard as it is at times, i try to laugh and make a joke of it, like smelly farts and poos etc. It stops other people being uncomfortable about it and lets them feel they can ask questions.

That's all for now, think I've written enough lol. If anyone would like a chat sometime just pm me :) i might not be any good at advice because i still don't completely understand the disease myself, but I'm a good listener :)

Take care everyone
 
So my doctor has told me to look into taking imuran along with a biologic: remicade, humira, or cimzia. I'm going to research them all, but my doctor said that if I am wanting to have children in the next couple of years I should probably look at cimzia, because it doesn't pass through the placenta. Any advice on which one I should lean toward? Any experience on these?
 

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