Hello everyone---IBD newbie

[whysoserious]

After being sick for several years, in January I was told that I may have Crohns or Ulcerative Colitis. Hopefully within the next couple of weeks I will have a definitive answer!

I'm very fortunate in that I'm able to control my symptoms through dieting. The only time I get really, really sick is when I am on my period, which causes me to flare up. I feel very lucky to only be really sick one week out of the month. I haven't had any health insurance for years, but I'll be getting on my husband's insurance soon, so I'll finally be able to go to a doctor! Yay!

This disease sucks and it's taken a lot from me. I can't work, and I barely can go to school anymore. I was a great student until I got sick. Now I can barely go to class and my GPA is shameful.

What bothers me the most is that some of my classmates and professors view me as lazy. They think that I don't go to class just because I don't want to. When I dropped some classes this semester--after I found out I have IBD--my professor said, "You know you are going to graduate late, right?". I explained that I was sick, and was only met with dissaproval and a lecture. Last night, I actually had a classmate tell me that I'm "f******g up" by not coming to class. I can't tell you how angry it made me. I don't know what to do anymore--school is about the only thing that doesn't make me go crazy from staying at home alone all the time, but I'm doing so badly right now I don't see how I'll ever be able to recover academically.

All in all, I have a lot to be thankful for, but I will be happy when I get my school issues straightened out.

Oh, BTW, this smiley sums up IBD perfectly for me ---> oo: LOL!

 

[Dustin]

Hi whysoserious, and welcome. I am sorry to hear you are not feeling so well. I was lucky in school in that I was diagnosed before high school, so I was able to let my teachers and fellow students know ahead of time. This made it a lot easier when I was missing school weeks at a time.

I hope you get better soon.

Good health and best of luck.

 

[My Butt Hurts]

I am wondering if there is someone in an official disabities department (or something like that) at your college that you can talk to?
I know there were some threads about that on here, but I don't recall the titles.
Hopefully some of the college kids will pop on and share their experiences with you.
And three cheers for soon to be insured!
Glad you found us WSS - welcome to the forum!
MBH

 

[Astra]

Hi there
and welcome

I was just wondering, can your mum/carer go in and explain to your senior tutor the difficulties you are experiencing? The college/uni have a duty of care as part of their policy documentation to support you.
If this was my daughter or son, I would either go in and speak to them or write to them with medical evidence
Sorry you're having such a hard time, hope it gets resolved soon
take care
Joan xx

 

[Entchen]

Hi, whysoserious (nice to "meet" you!). I am also not yet diagnosed, but I'm being treated with Crohn's-friendly meds until a colonoscopy is done. Being sick and going through all these tests feels like a lot to be slammed with at age 30!

I would love some advice from you on controlling symptoms through diet, if you're willing, as I haven't managed to find any foods that seem to help.

Being a student is a full-time job. Being sick is also a full-time job. I agree with MBH and Joan and hope that you can start to find help through the resources available on many college campuses. Even if you are not granted special consideration for exams and assignments, I wonder if your profs might benefit from a friendly conversation with a disabilities rep to start to think about how her/his responses to your illness (thinking you are lazy) can be hurtful.

Re. your GPA -- you CAN recover academically. Really. And if you're thinking about applying to grad school: many programs are willing to take into consideration illness (or other factors) if you have a couple of semesters where your marks are lower.

-Kelly

 

[whysoserious]

Thank you all for your replies!

Dustin--my husband's name is Dustin too!

My Butt Hurts--there is a disabilities department, although I think they mostly deal with learning disabilities. After I have documented proof of my IBD I will definitely look into talking to them, it can't hurt anything!

Astra--hi Astra, that's something I will probably need to do myself. I'm looking into taking online classes, that way at least when I flare up I won't miss anything.

You all had good points, thanks again for the replies.

 

[whysoserious]

Hi, whysoserious (nice to "meet" you!). I am also not yet diagnosed, but I'm being treated with Crohn's-friendly meds until a colonoscopy is done. Being sick and going through all these tests feels like a lot to be slammed with at age 30!

I would love some advice from you on controlling symptoms through diet, if you're willing, as I haven't managed to find any foods that seem to help.

Being a student is a full-time job. Being sick is also a full-time job. I agree with MBH and Joan and hope that you can start to find help through the resources available on many college campuses. Even if you are not granted special consideration for exams and assignments, I wonder if your profs might benefit from a friendly conversation with a disabilities rep to start to think about how her/his responses to your illness (thinking you are lazy) can be hurtful.

Re. your GPA -- you CAN recover academically. Really. And if you're thinking about applying to grad school: many programs are willing to take into consideration illness (or other factors) if you have a couple of semesters where your marks are lower.

-Kelly

Hi Kelly! Thank you for the encouragement. I agree that talking to the disabilities office could be beneficial. I was just very shocked by how quick people were to judge--even after I explained that I was sick. I really hope I can bring my GPA up soon. Thanks again for the kind words.

Regarding diet: what works best for me is really, really strict but beneficial. I don't eat gluten, wheat, dairy products, fried foods, drink caffeine or alcohol, don't eat many foods with preservatives, and don't eat raw fruits or vegetables. When I first started this diet it was very sucky--I couldn't eat anything I wanted! But over the past couple of months it's gotten a lot easier. I can still eat foods I want, I just have to find substitutes for them. For example, I looooove pasta. So I started eating pasta made with rice. Very yummy! I bought a bread machine so I can start making gluten/dairy-free breads. Eat very small portions. If you're still hungry, eat again in about an hour or so. I find if I eat very much I get very nauseated.

The only problem I really have is going out to eat. My husband likes to go out to eat and I don't think it's fair to him to not eat things he likes just because I can't eat them. So I try to find substitutes when we go out. Like when we go out for Mexican food, I get them to bring me corn tortillas instead of flour tortillas. If you really want a dish but it has a product that might make you sick, like cheese, explain to your waiter that it makes you ill and they'll make you a serving without it.

If you try this, let me know how it works for you! Everyone is different--I have one friend with Crohns who is a strict vegan and another who eats whatever she wants--but this is what has worked best for me. I hope it works just as well for you.

 

[Crohn's 35]

Hi Whysoserious! The disease is a hard one for us to wrap our heads around and unless you have it, everyone thinks you have a 'tummy" ache and it is the reason awareness is so much needed. Alot of people miss out on school, jobs and family, and we are the ones who suffer both ways. Whether you have Colitis or any IBD or IBS, it still is hard to cope. Once you get a full dx and treatment, hopefully you can pick up where you left off for school. Even if you have a IBS and not the disease you are still welcomed here, always! Hope we have helped ease your mind a bit. Hang in there!

 

[Astra]

Hi again!

So sorry, I just assumed that you were a teenager at college! Didn't even see that you had a husband lol xx
Distant learning (online) is a smashing idea, I did that too, many years ago and It was fab, cos my loo was nearby! And I came away with brill qualifications.
good luck with everything, especially sorting your insurance out, we're fortunate here in the UK, that we don't have to worry about that.
lotsa luv
Joan xxx

 

[alexandros8]

Hello, and welcome! I love the user name btw...

I understand exactly what you're going through with school. I was diagnosed as a freshman in college and took it with me through my MBA program. Its not fun, especially because the other students don't understand- most of them have never heard of CD.

What I told a few people who didn't "get it" was something I heard a while back (and I'm not sure its true), but that its the highest pain, non fatal disease known. Even if its not true it usually got people to shut up. Back in college I had to miss a TON of class because I was curled up in bed in pain.

I began informing all my professors on the first day of class. I said I could provide a doctor's note if needed- but that in general here is the deal and I am going to do my best to get around it. My end GPA wasn't what I wanted it to be, but as has been said- you can recover. Definitely bring it up with your academic advisor if you've got one, they can be a huge help. And grad schools do take into account dealing with this disease... I even wrote my personal statement to my MBA program's application about my struggles with it. The more you take care of yourself (which it sounds like you are!) the better off you'll be. Just ignore the ignorant!

Best wishes,

Alex

 

[Entchen]

Thanks so much for the advice re. diet, Whysoserious. I've requested some books from the library to help me get started, too. It seems so counterintuitive to me to avoid fresh fruit and veg, but I can't say I'll miss broccoli, anyway!

When I started teaching college classes, I had a hard time remembering that the people in my class were individuals who had lives (both joys and stressors) outside of class. Once I was encouraged to do that and to make real connections with people, I felt like everyone in the room -- including me -- had a more positive experience. Now I encourage people to do THEIR best instead of THE best. If your best is a B or a C or maybe sometimes you even need to take a course again -- you've still done what you can do, given the other things in your life that you need to deal with, too.

ps: I think my employer might have a stroke if I excuse myself from data collection one more time because of "fever" or "vomiting." But, we collect data on an ICU and people who throw up are NOT ALLOWED! I didn't have Crohn's symptoms before I took the job.

 

[whysoserious]

Thank you all again for your replies! This seems like a wonderful community, I'm glad I joined. Everyone is very supportive.

Kelly, I agree! When I first heard about the raw vegetables, I thought "what kind of diet doesn't want you to eat salad?". Salad is the only food I really, really miss.

 

[Nancy Lee]

Hello Whysoserious!!

Just a quick welcome to the Forum!!
Good to have you on board!

Hugs~Nancy

 

[whysoserious]

Hi everyone, didn't want to start another thread so I'm just bumping this one. Today was the day I thought I was going to get a diagnosis and meds and start on the path to recovery.

Instead, I was told I probably had IBS. I could pull my hair out right now. I've been crying all day; I feel like I took about 10 steps back instead of the couple of steps forward I was hoping for.

 

[dreamintwilight]

Aww, I'm sorry you're feeling discouraged! What about getting a 2nd opinion?

 

[Astra]

Hiya

Oh God! I feel your pain Oh so much!
So? based on what? what tests did they do? Colonoscopy? small bowel follow thro? CAT scan? Endoscopy?
I would get a second opinion too, cos if you do have Crohns or UC, to leave it, will cause you so much damage later on, and misery.
When I say damage, I mean inflammation, scarring etc, that diet alone will not cure, watching your diet will combat D, but not inflammation.
good luck and keep us posted
xxx

 

[whysoserious]

Thanks twilight and Astra. I just feel so deflated now. When I went to the doctor yesterday he acted like he had never seen me before. I mentioned that I didn't realize that people bleed when they had IBS and he said "oh, you bleed?". I realize that he has other patients, but I was still suprised that he didn't know that, since I've told him several times. He said it was probably due to my constipation. I wasn't aware that people just gushed blood due to constipation. I don't know what to do anymore. I thought things were going to get better, and now they are just getting worse. I can't keep going on not knowing what's wrong with me. I don't want to have Crohn's or Ulcerative Colitis, but I don't want to not know what's wrong with me either.

 

[dreamintwilight]

Sounds to me likme you're not getting the care and attention you need. That's not right for the doctor to not remember who you are and not remember things you've told him, especially more than once. And I am not a doctor, but I do not think "gushing blood" can be from constipation. Correct me if I'm wrong anyone.

Please PLEASE get a 2nd opinion. It's not worth your unhappiness to just settle for what this doctor is giving you, which is not much! Support form your doctor is very important, No wonder you feel so deflated! I don't blame you. I know it's a hassle to find someone new, but they could give you more insight and perhaps make you feel you ARE important to them! Good luck. We are here for you to vent!

 

[whysoserious]

Hi everyone, sorry for not posting for a while. I've just been feeling bad and haven't felt like talking to anyone. I was feeling better for a little while. Last week I found out that I have endometriosis and I had a laparoscopy done to remove it. I had some on my bowels, which my gastro was thinking was causing all of my problems. However, my OBGYN said that I didn't have enough to be giving me the bleeding that I have. On Sunday, while I was still recuperating from my surgery, I had a flare. It was awful to have to go back and forth to the bathroom when I was already in a lot of pain from my surgery. I started having really bloody diarrhea and bleeding rectally. I talked to a nurse practitioner at my gastro's office yesterday and she ordered a blood and stool test to make sure that I don't have an infection from the surgery. This isn't the first time that this has happened to me and I'm so tired of getting the run-around from the doctors. On one hand I know that they don't want to diagnose me with anything until they are absolutely sure that I have it, but on the other hand I can't keep living my life wondering what's wrong with me! I thought I would have answers by now but all I keep getting is a bunch of questions.