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Posted 1/18/2018 4:09 PM (GMT 0)
I am 15 years old and I have crohns. (I have been diagnosed for 8 months.) Currently, I have 2 fissures that have not gone away and it has been around 2-3 weeks now since I've been diagnosed with it. I am having nightmares and I am now afraid to sleeps. Has this happened to anyone? How do I fix it? (Nightmare is my organs fall right out of my anus.)
My parents have put me on remicade about a year ago. I have been the same, but my rectal bleeding stopped. They are thinking of putting me on Humria. What are the side effects? Will I lose hair?
I just need some advise about my fissures and crohns in general. I am a young girl so it is pretty difficult to be experiencing this and enjoy life.
Posted 1/18/2018 10:45 PM (GMT 0)
Hi MB,

Welcome to HW. I'm sorry that you've been having problems. This disease can be very hard to understand, especially at such a young age. My Daughter was diagnosed at 13 years of age.

Knowledge is power. That goes for many unknowns in life, and dealing with Crohn's comes under that category. To put your first fear to rest, I promise you, your organs with not be falling out of you. As for your fissures. They can certainly be stubborn. Since you're already on the best possible medication for Crohn's, I'm going to assume that your disease is under control, and not the cause of the fissures. Often times, fissures are caused by hard stools. They can actually cause tears due to hard or sharp edges. I'm not an expert on fissures, but I believe there's a cream that can be used.

Can you tell us how you're feeling overall? Why the possible change of meds to Humira? Have you had any recent diagnostics done?

As i mentioned, dealing with this disease can be tough. Crohn's can vary in severity, and many go on to have very normal lives, and are able to cope and live with the disease. Getting the best possible care and support, along with the best possible treatment plan are imperative.

Hope you're feeling better soon. Keep posting, and asking questions. There are quite a lot of knowledgeable people here that are willing to help.
Posted 1/19/2018 1:11 AM (GMT 0)
Hello Monte,

I am so so thrilled that you replied, thank you so so much!!! You really do not know how much it means to me. I am so sorry that your daughter has this disease, she is much younger than me so I know she must have been struggling.

Is she still 13? (I am 15 so I am just wondering) I would like to know about when she was first diagnosed if that is ok? Maybe we have something in common.. Also, what medication is she on? How is she doing?

Let me tell you, you are 100% right about the knowledge is power for crohn's. It is such a powerful factor that helps achieves great results.

Right before I was diagnosed with my fissure (2) they noticed I was starting to get a lot of low down inflammation. (I have to take milk of magnesia every night, so I keep my stool super soft to prevent this.) Then I got the stupid fissures. I am taking a muscle relaxer cream (nymfedipne) which was given to me from a surgeon. Before that I was taking 2% lidocaine. (My father is a surgeon so he was able to bring me home a lot of it. You think it would be good that my parents are in the medical field it helps me.. trust me its horrible.) This lidocane and cream still is not helping. So I am still recovering, but I know this can take up to 8 weeks. I am actually going for an x-ray tomorrow night for my stomach to see how much stool is in me. I do not understand why though. All I know is I keep having accidents and vomiting more than usual which is horrible. My doctor also wants to do another colonoscopy and endoscopy soon. I will have to get one every 8 months to my understanding to see if my inflammation is decreased.

Overall I am feeling horrible. Vomiting and pooping at the same time is not what I would like to be doing. Tossing and turning all night is my version of sleeping. I am truly at my mental and physical breaking point. Emotionally, I can not take it.

I have not slept one full night in 1 and a 1/2 weeks. My body will not let me. I have tried everything in the book, you name it.

Regarding school, I do get tutored. I want to go into the medical field when I get older to continue my family name. My father owns private practices so I would like to continue that. They never pressured me to go into this field, it is just something I love and am so interested in. So I am trying my best to keep my grades as high as I can get them. I am barely in school at the moment. Sitting is unbearable for more than 2 hours.

My mother is constantly badgering me, telling me what to do; however, I have sort of a schedule on how I take care of myself. I know she just worries.

I see a therapist to sort out my issues. (Ive seen one for all my life, thinking because I threw up a lot I was a nervous person, but it turns out it was crohn's. The initial indication was non stop bleeding from my bottom, anyway.)

Regarding the change to Humira. I am getting what seems like sicker and sicker. The only thing that has stopped and improved is my energy. I take iv Remicade which is a horrible drug, in my opinion. I go to the hospital and get it done every 4 weeks. It takes hours, the first time took around 19 hours, now only 5.

Do you know anything about this medication (Humira) ?

I have had no other diagnostics, thank god.

Anyway, I hope we can stay in touch. smile Thank you again for taking the time to talk to me.
Posted 1/19/2018 7:45 AM (GMT 0)
Hi there! Im so sorry you are going through this. It sounds like you are having an awfully rough time getting the crohns under control. I cant imagine what it would be like to have parents in the medical field while trying to navigate this, probably a few pros and a lot of cons. I first started having major symptoms around your age, though I'm sure I had more mild ones before that but I wasn't diagnosed until my very early 20s. Crohns is not an easy thing to deal with especially when you are young and I have many experiences with that, getting through high school, college and graduate school and dealing with the unexpected thrills of crohns along the way. I too thought for a while before I was diagnosed that it was all caused by me not being able to deal with large amounts of stress so that didn't help the situation. I didn't start humira Until I had been dealing with a fistula for 3 years (totally understand trying to do work while not being able to sit for long periods and remember the trauma of the hard desk chairs in classes that were hours long in college). Humira worked really well for me initially. It healed the fistula I had and gave me a decent remission for about 9 months before I had some side effects- aches, pains and stiffness that was bad enough to make me quit. The side effects stopped after I stopped the medication and I had another 7months of remission until I flared. I am now on remicade and 6MP which are working well (can I ask what you don't like about remicade). Other than the problems i had towards the end, Humira worked really well for me. I may have lost a bit of hair but it wasn't enough to be memorable. when taking it find out which one you like better - the profiled pen or the syringe. I did not like the lack of control with the pen, It seemed to administer it too fast for me. The syringe, though you have to inject it yourself, can be controlled better and to me, reduced any stinging or discomfort.

As for parents, I'm sure your mother is just extremely worried about you. My mother still does it despite me being an adult and its not always easy but I know she cares.

I have moe to say but I will leave it at that tonight. Hang in there!
Posted 1/19/2018 11:17 AM (GMT 0)
I'm sorry about your diagnosis, especially at such a young age. I would try doing a site search for fissures and Crohn's. Fissures are a fairly common problem and reading about other people's experiences and what they did to treat their fissures will hopefully be helpful.

As for the x-ray, your doctor probably wants to check that your colon isn't backed up with stool, because if it is that could be the cause of your vomiting. It is possible to have diarrhoea whilst constipated; the liquid squeezes its way past the solid mass of stool and is known as 'overflow' diarrhoea.

If your colon is empty, however, then you deffo should have small bowel tests to investigate the cause of the vomiting. An endoscopy is a great place to start, but you should also have another test to visualise the entire small bowel (usually that will be an MRI scan or a pill cam).

Humira is an anti-TNF like Remicade, i.e. they target the TNF molecule which is driving the inflammation and reduce the amount of TNF in your body. It's not any more likely to produce side-effects than Remicade is; it's worth a try. I hope that Humira is better for you and you feel better soon.
Posted 1/19/2018 11:50 PM (GMT 0)
Hey Labradorite,

It is so re assuring to hear such similar stories to mine. It is crazy how common it is that people with crohns are mixed in with people who have high anxiety and especially mis treated. I am so sorry you had to deal with a fistula for 3 years.. It must of been a horrible time..

Did you ever end up getting surgery for it??

I am glad I only have a fissure at the moment.

Anyway, the remicade is working to decrease my inflammation and rectal bleeding (my disease is more low down), but I still throw up a lot and get sick. I know that might just be how my life is, but I don't want to believe it.

My doctor is a family friend and she is great to communicate with. I believe our steps are to deal with my fissures, make sure they do not get worse, and then figure out my course of action. I prefer my doctors to be very conservative when treating me. So I do not want to jump right into surgery or anything for my fissures, I feel I need a lot of time.

Today I went for an x-ray. I think I can read them pretty well, and we were looking for stool. All I noticed (and my mom and radiologist) was gas and no stool. That worries me because now I have a feeling they want to test me or something. (Put me under for it) When, if there was stool in me they would have cleaned me out so I would stop pooping my pants. haha

I had a horrible dream last night. I have been having these crazy dreams now two nights in a row (that is what made me want to join this website). My dream was that my 1 of 2 fissures, that is located on the wall in-between my vagina and and anus, ripped (turned into a fistula) and poop was coming out of my vagina. In my dream I was in my bathroom, on call with my doctor, and I started to send her pictures. I remember her being calm, but she wanted me to come in. I woak up to find out I have only been asleep for around 3 hours. That probably all I am really getting at night now. My dreams are very graphic. So I was shocked and in tears when I woak up. I told my parents. I haven't talked to my therapist about these dreams, but I will.

Thank you so much for reaching out to me, it means a lot. More than you would think.

<3
Posted 1/19/2018 11:58 PM (GMT 0)
Hey NiceCupOfTea,

Thank you for reaching out.

You words really seemed to calm my nerves.

I was just wondering (if you don't mind) how old you are? I was just reading your info and it seems like you have quite a lot done

Thanks a lot!!
xoxo
Posted 1/20/2018 12:47 AM (GMT 0)
MB,

Well, the vomiting and pooping are a concern, but not as much of a concern as if you were only vomiting. Since you are able to have bower movements, then that should rule out a blockage. Still, the fact that this is going on, and that you say you don't feel well at all, certainly have to be dealt with. How long has the vomiting and diareah been going on? I think your GI is right in doing the scopes. You might consider an MRE as well. They really need to get to the cause of all of this.

As far as going to Humira. These meds are so individual. Some thrive more on Remicade, while others do much better with Humira, or one of the other Anti-TNF's. How long have you been on Remicade, and did you notice any improvement in your Crohn's symptoms when you started it?

Try not to be too hard on your Mom. I'm a little biased being a parent and all, but since I'm in that role, I know that it's just that she loves and cares for you, and ultimately just wants the best for you. I know from your perspective, it can come off as controlling and domineering though.

As for my Daughter, no she's not 13 anymore, she's coming up on 25. She also thinks I "tell her what to do", although she prefers the term "controlling". She's been on Remicade for about 3 years now. Fortunately, she's done pretty well with it.

Once again MB, I hope things start to improve soon. I'm sure your Doctors will get to the bottom of the problem, and get you back to being a normal teenager. Keep us informed on how things go.
Posted 1/20/2018 4:32 AM (GMT 0)
Hey, MB!
Sorry to hear that you're feeling bad right now.
I was also diagnosed at 15. My first symptom was a fissure that just wouldn't heal. I wanted to die everyday, but I just kept hanging on. There was also one day where I bled so much that I had to go to the ER, but all they did was shove their finger up my butt and tell me that I must have been lying about the amount of blood.
I had a colonoscopy and then got diagnosed. I felt better, but a year later I stopped my meds and didn't take care of myself for 10 years, so the disease came back and really kicked my ass.
I'm a teacher now and I tell my students about Crohn's disease. I tell them I was diagnosed at 15, which is their age and I tell them about what it was like, so that they can be aware of the disease and keep an eye out.
I hope your doctors can help you get a better quality of life.
Feel free to post here anytime!
Posted 1/20/2018 1:14 PM (GMT 0)
Hey MB.

Glad I could help! I turned 43 yesterday - so as you can see, I'm quite a bit older than you <_<. I wasn't diagnosed until I was 25, though, so my disease started later. I've got an older brother with Crohn's disease too, but his disease has taken a much milder course than mine. He's never been hospitalised, had surgery, or been on a biologic. He's been 'lucky' with his disease (not lucky to get it, but lucky that it's had relatively little impact on his life).

Anyway, there are people with severe disease who, once they get it under control, stay in remission for years. I'm hoping you can be one of them. But I do think your doctors need to try to get to the bottom of your vomiting episodes: it can't be constipation if your x-ray was clear. The next obvious place to look at is your stomach and small bowel (hence an endoscopy and MRI scan/pill cam): it's important with Crohn's to look at the entire digestive tract.

I'm having bad dreams as well. Not about Crohn's admittedly (ever since having my colon removed it has been much more stable), but sometimes they turn into nightmares and they are horrible. I know they're a reflection of all the problems I'm having in my life at the moment. Please do talk to your therapist to them - and perhaps mention them to your GI as well. I think fearing fistulas is entirely understandable. I don't know if this helps but before my first surgery I did have a very painful fissure just outside my butthole for a year or so. It came and went, so I think it would partially heal and then get worse again. It was excruciating - beyond even butt burn excruciating, which is bad enough. Anyway it never turned into a fistula, which was something I was a bit worried about. Then I had my first surgery which made it go away completely. That said, I think you are right to be cautious about surgery and try all other possible methods of healing first.
Posted 1/20/2018 5:09 PM (GMT 0)
Hello Monte,

I know my parents are trying really hard. When ever I tell my father how I feel, he yells. I do not know why..

Any advise coming from a parent??

I have been on remicade for around 8 months. The only thing that has improved is my rectal bleeding, which is great!! I know that if I try to switch to humira and it doesn't work I can not go back to remicade. This is because I will have produced antibodies so I will have a reaction to it. All I am worried about that if I switch, and humira is worse, I am basically stuck.

As for my fissure, last night I was bleeding pretty bad so I took a hand held mirror to check my self out, and I saw a big hole, which was scary. My fissure never looked so serious, it was like having two butt holes. ****..

I told BOTH my parents and my dad just started to fight with my mom.

Anyway thank you for your concern.

As for your daughter, I think the exact same way as her, when she was around my age. She seems like an inspiration to know how much more healthy she seems now. Give her my wishes. xoxo

<3
Posted 1/20/2018 5:15 PM (GMT 0)
Hello Gypsy,

I am so sorry to hear how horrible you felt. I can totally relate, to the faking part. I think that is a big part of our disease is where we get blamed for exaggerating or making things up. I went through a similar experience with the fingers up the butt. The day I got admitted to the er there were so many finger in me hahah. Now every 4 weeks my doctor puts her finger up me and it doesn't really bother me anymore.

I am sorry that your disease hit you hard..

Are you on any medication now?

Man, I wish I had you as my teacher. Teachers at my school do not understand why I am struggling and they perceive crohns as a stomach ace. You really must be helping many students because you are so open and honest about your self. That is something kids need when they are trying to figure out their diagnosis.

Please stay in touch.
smile
Posted 1/20/2018 5:24 PM (GMT 0)
Hello NiceCupOfTea,

Wow, it sounds like you have been through a lot. I am so sorry.

Thank you so so much for all of your advise. I do think that I need a bit of work done. I do not mind getting scans or anything, in fact right before I was diagnose with this fissure I had an MRE. (This was to find any fissures I think but they didn't see any, then I got one.) I just hate drinking that nasty stuff.. makes me wanna vomit.

Speaking of vomit, I threw up this morning... again. Uggggg. It got triggured from a nasty smell.

For the fissure, mine is also right next to my butthole. It is in-between the wall of my vagina and anus, it looks like a second butt hole. I always get refer vagina pain which is horrible.

I am so sorry to hear you have an ostomy. I know how painful they can be at times, but also it must have been a reliever.

Did it make you feel any better?

I was in remission for a while, but got this fissure/flare. sad

I am glad to hear that someone else had also experienced these dreams as well. Well, not glad that your having them, just glad knowing there is someone else out there that knows how it feels.

What were your dreams like?

Ill keep you updated, and keep me updated..

xoxo
Posted 1/21/2018 12:47 AM (GMT 0)
MB,

I'll try to address your Parents first. I'm not sure of the circumstances that of what makes your Dad yell over relating how you feel, but I have a pretty good guess. As a caring Parent, and particularly coming from the medical profession, I'm sure they want to feel that they are getting you the best possible medical care and treatment. When you relate that you don't feel well, it's sort of frustrating for them. I've experienced this myself. It's like, you should be doing better, but you're not (?). I know you have enough on your plate to deal with, but try to understand their perspective. There's a lot of Parents out there that couldn't care less about their children, and simply view them as a burden. It sounds to me like your Parents love you very much.

Before jumping the gun and switching to Humira, I would wait until the diagnostics come in. If you're not having any inflammation, and it's just the fissures that are making you feel so bad, then maybe the Remicade is doing it's job and you just need to address the fissures. Remicade is still considered the state of the art drug in Crohn's treatment, so I wouldn't be too quick to go to something else.

Lastly, as far as my Daughter goes, i'm glad you view her treatment as inspiration. You will get better!!! Your Parents will advocate for you, and you will get to the bottom of any issues you're having right now. I'm very, very sure that you will have plenty of healthy, happy days ahead.
Posted 1/21/2018 5:27 AM (GMT 0)
I agree with what 73monte is saying about parents. Mine are polar opposites(they are no longer together) my father couldn't care less- used to fall asleep at my doctor appointments and when I was in the hospital (when I was a kid he had to take me because my mother is/was disabled), rarely asks how I'm doing, even then only superficially and didn't even visit me in the hospital the last time. He will say he cares but he really does not know what caring is and is not capable of it. I lost one of my doctors because before I was able to drive he decided I was messing up his life/work and did not show up to take me to an extremely important GI appointment despite the promises he would, this happened fairly frequently. My mother makes up for it though- we can discuss anything with each other- however it can be hard because she does the worrying for two parents, is concerned about any little complaint I have and gets very frustrated when I don't feel better or have new problems despite all of the medical care.Not saying my situation is any easier or harder than yours- each has its own difficulty- It's hard dealing with parent reactions no matter what when you are still finding your own way but give it time. I like to take a step back and try to view it from a neutral point of view, as monte said, to get an idea where they are coming from. Im sure its frustrating for them, being in medicine and not being able to make you better right away since it's what they do for a living. Seeing their point of view might help you respond calmly and help prevent something that starts out with yelling from escalating. this may take practice and it doesn't mean they are always right but it may prevent an argument.


The fistula was bad. I did learn to live with it, I had periods where it wasn't as active and once I had it I wasn't scared of it. I was thankful that I had read about them on here long before I got it so I knew what I was dealing with and that it wasn't the end of the world but I cant say those were the best years of my life. You learn to cope but that takes a lot of energy and dealing with a lot of discomfort. Luckily, I didn't need surgery for the fistula, the humira healed it after a few months.Its taken quite a few years for my fear of it returning to diminish. During that time I had a lot of inflammation low down too, though I think the crohns is pretty much active every where for me when it gets really bad. The closest I've come to surgery was a stricture I had several years ago. I was very sick with it but my GI is amazing and he managed to dilate it very carefully during colonoscopies several times and cleared, preventing the need for surgical repair.
It sounds Like you have a good relationship with your GI which is so important. Being conservative is something I value too. I agree that you shouldn't settle and shouldn't be throwing up. take things step by step and keep trying for a solution. There was a CCFA conference this weekend that was called something like Crohns and colitis congress I think- quite a few doctors were sharing really good info from it on twitter- you might want to check it out if you haven't. They talked a bit about goals for remission too. It can take a while to get the treatment plan right and its an ongoing process requiring a mix of patience and persistence.

I have had some pretty vivid dreams too! none recently that I can remember. They usually come not too long after I've had some major problems. I think there were a few dismemberment dreams with colons and gruesomeness, one with a previous GI that I didn't like, and probably a few I died in. I still get frequent dreams about being in the hospital- they usually aren't disturbing though. Looking back- sometimes its hard to figure out which ones were the nightmares and which were reality. Though in the end, I'm less scared then when I started out because I have gone through a lot of major things I was initially frightened of- faced them and recovered from them. I remember being around your age- there was a story on tv about GI health and I remember thinking how that would be absolutely the worst thing in the world to have to deal with, like I would die from having to go through any testing basically out of the assault on my modesty or something. Since I was so shy there would be no way for me to cope with that. Now I'm like- so who wants to talk about Poop?Intestines? haha, things change and you adapt smile
Posted 1/21/2018 12:29 PM (GMT 0)
Yellling is a bit of a red flag sign for me, to be honest. But how bad it is depends on what your father is actually yelling about; if it's about how useless the doctors or meds are, then that's not as bad as if the yelling is about you (e.g how you're not doing enough, how you should be stronger, or whatever - but in effect blaming you for being ill). Either way though, he really shouldn't be yelling at a 15-year-old child. Frustration is understandable, but would your father yell at his patients if they didn't get better? Probably not!

At any rate, moving on... :-/

@MB - I am glad you don't mind tests, because that does make it a little bit easier. I agree about the MRE contrast being horrible though. I once had to gulp it down in a few minutes (the nurse was pressuring me to get it down); it made me severely nauseous and holding my breath during the scan was a nightmare. I almost made it to the end but not quite - I knew I couldn't hold it any longer, so I sounded the buzzer, gestured wildly for a bowl (I couldn't speak), somebody got me a bowl and I threw up copiously. The tech offered to stop the test at that point, but like a champ I volunteered to continue and went back into the machine.

But er yeah, don't worry. That only happened to me once out of about 6 or 7 scans I've had. Every other time it's been fine.

As for having an ostomy, yes, it did make me better. There can be a steep learning curve with having a stoma, although some people adapt to it almost straight away - I wasn't one of them. But with time it did become much, much easier and I sometimes wish I had chosen to keep it rather than have it reversed. My surgeon would give me another stoma if I asked her, but I don't feel like I am bad enough to justify it yet. It will probably happen one day though. And I am okay with that.

It's hard to say what my dreams are about, since I always forget 99% of them shortly after waking up. But often there is a sense of danger. It might start off with me watching a movie or playing a videogame, but at some point the movie/videogame becomes real and it's really happening. Last night I was on a long journey home with my family - I was driving and very nervous for reasons I can't remember. It eventually ends up being just me, my mum and my mum's friend and we end up in the friend's home suburb, where I get completely lost for a while and the friend has a go at me. In the dream there is a strong sense of deja vu, but the place looks nothing like it does in reality.

There is a sense of urgency and danger throughout but I'm not sure what from. At one point we're in a supermarket; my mum, etc. go off to buy some stuff, I go off to the toilet. I'm freaking anxious because I know I have to hurry; but I can't cos Crohn's. At another point in the dream, my mum and her friend are spending what feels like half an eternity in a clothes shop (Fat Face I think); that bit was actually amazingly realistic >_>. Again, no one is happy. There is an undertone of stress and anxiety, but I think the clothes shop part was earlier on in the dream and I don't remember what happened there.

So yeah, sometimes Crohn's does come into my dreams, but I'm usually being chased down by something or someone, or terrified of a pitch black room in case an axe murderer is lurking there, or something.

Perhaps the worst dreams though are the ones where I'm lying in bed in my own bedroom and cannot switch on the light: no matter how many times I try it won't come on. In the meantime there is somebody at the window trying to get in.... Grim. It's always an overwhelming relief when I wake up and switch on my lamp and it does work.
Posted 1/21/2018 4:16 PM (GMT 0)
Hello Monte,

You are right about my father. He runs the hospital, so when I go in they treat me like VIP. I just wish my parents would let my doctor treat me how she sees fit, instead of bugging in trying to change my course of action. I have always been my fathers favorite out of my four siblings.. I am his "princess." So when I do not feel well, that hurts him. His two brothers had crohns growing up and he told my mom they they were in horrible shape. I guess he sees a lot of them in me and it scares him.

I think I am going to get an endoscopy and colonoscopy very soon. I go back to the hospital in a week and a half, if my fissure is still there I believe the doctor is gonna put me under to see whats wrong. If it is not, were going to do a colonoscopy and endoscopy.

Stay in touch smile
Posted 1/21/2018 4:26 PM (GMT 0)
Labradorite,

My parents are ALSO polar opposites. Dad, very non social and when it comes to himself. Mom, very outgoing likes to be around people. My mom is ALSO doing the worrying for two people because I try not to share a lot with my father. I know he means best, but he yells and is angry when I get sick. He doesn't yell at me, my mom. They fit when I don't feel good.

I am so so sorry how your father treated you. At least, you had loving mother there for you.

I am so sorry that you had your fistula for a while.. I know how painful they can be.

I will check out the CCFA congress on twitter. smile Thanks for letting me know!

Hahaha I am the same way. My family has really been super honest and open about our poop and stuff.. but now wed be eating dinner and my mom would ask me the usual.. Did you poop today? I am glad we can find a sense of humor in the dark times.

Thank you for letting me know about your nightmares. I have been having quite a few of them.. they are so scary.

Stay in touch smile
Posted 1/21/2018 4:33 PM (GMT 0)
Hey NiceCupOfTea,

You are right. My dad usually doesn't yell at me because he doesn't want to upset me. He fights with my mom, and they picks a fight about something else.. My dad and I have a close relationship, but we don't communicate about my disease.

Thats horrible!! Right before my scan I there up all of the contrast and they made me drink it agin. :/ Its not even a little bit of contrast they make you drink so much of it!!

If you have an ostomy, does that mean you have low down disease? I just found out a family friend has an ostomy and I would have never known. You can't even see it!! Ive hugged her plenty of times and never felt it either.

The dreams sound horrible.. The sensation of being rushed using the bathroom is my worst fear.

Stay in touch smile
Posted 1/21/2018 5:39 PM (GMT 0)
Welcome to the Forum MB1123,
I have a son who was diagnosed with severe Crohn's at 19 years of age (but probably had Crohn's for a few years prior but did not tell his dad or me about his symptoms). He is now 21 years old. You have found a great forum to join and the wisdom and support here is amazing! My son has not had fissures but did have to be hospitalized twice after diagnosis (once because he vomited so much he had a micro tear in his esophagus) and then a few weeks later for illeo cecal surgery (TI removed along with 8 inches of colon / appendix) due to his obstruction. He had several trials of medications but is currently on remicade, methotrexate, B12 vitamins, folic acid, probiotics and colestipol. HE FEEL AMAZING. He has been in remission for over 8 months and his blood work is perfect AND despite being too thin (140 pounds and 6'2) he is doing well. I can speak as a mom of a sick son that it is hard to know what to do. I took the "learn all I can route" and researched and continue to research ALL I CAN about this disease. I know that finding the right GI is crucial (I drug my son to many GI doctors to interview them) and following the treatment plan is also crucial. When my son was at his sickest (and it was very bad) one GI doctor hugged him and said "You will not always be this sick." He was right! I hope you can communicate with your parents about this disease and continue to find the right support - here, with therapists etc. My son is now studying in Italy for 6 months and I have backed away from worrying about him. But it took a long time to get here! Best to you!
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