The worst 2 years of my life

[Theresa_Dawn]

Hey everyone, I've been diagnosed with Crohn's disease since December 4th, 2012. I had so many problems with pain, rashes, unexplained fevers, constipation, diarrhea, and weight loss. I feel so awful all the time, I don't think I go one day without a flare up and the only way to make it go away is to sleep; and I can't do that half the time because I'm at work. I was brought to this site in hopes that I can learn more about Crohn's and ways to get better.

 

[Artisan105]

Hey everyone, I've been diagnosed with Crohn's disease since December 4th, 2012. I had so many problems with pain, rashes, unexplained fevers, constipation, diarrhea, and weight loss. I feel so awful all the time, I don't think I go one day without a flare up and the only way to make it go away is to sleep; and I can't do that half the time because I'm at work. I was brought to this site in hopes that I can learn more about Crohn's and ways to get better.

Wow Theresa you're just starting this tuff journey. I am sorry you got diagnosed with Crohn's. Many of us got diagnosed very early but many developed it around your age.

What medication are you on?
1) It is really really important on what you eat. So please go to the diet forum and there is a whole list of foods people have tried and it worked for them but everyone is totally different so make a journal on what foods hurt you and others that make you feel good/normal. Do not eat any processed foods so basically anything boxed at a store. Anything instant is bad. Juice with high acidity is typically bad. Spicy food is not good. Milk is bad. Raw vegetables is not so good for some. Do not get any take out foods like pizza. Do not drink alcohol. etc etc.

2) Stay away from stressful situations. If your job gives you a lot of stress, it is best to get out of it. In school, try not to over burden yourself and take classes part-time until you are feeling better. Think of your health first before anything.

3) Tell your doctor about everything you are going through. All the medicine that is not working. All the medicine that is hurting you. All the pain, bleeding, cramping, bloating, etc. If the doctor doesn't listen to you, find a new doctor.

4) Oh welcome :]

Everyone here has Crohn's or IBS. We all went through minor to major operations or procedures at the hospital. Ask your questions. We will try to help you as much as we possibly can. Stay strong. You can do it. :]

 

[afidz]

Hello and welcome
Sorry to hear you are having such a hard time with it, its a tough disease to live with. This forum and the members in it have really helped me through some tough spots and I hope you eventually feel the same. I was going to ask about your meds, but Artisan is already ahead of me on that. The biggest piece of advice that I would give you is to be your own advocate. Learn everything there is to possible to learn, be an informed patient. Don't be afraid to ask questions. Listen to your body, if something feels off, it probably is. Don't be afraid of ask questions. I hope you feel better soon

 

[Theresa_Dawn]

Well I'm only taking Apriso ER 0.375 and Mirilax for when I can't use the bathroom. It's really tough considering I used to eat all the junk food and fast food and pop all the time. I can't eat anything that won't hurt me that I know of. I've tried eating lots of cooked veggies and meats that don't have seasoning on them and I still hurt. When I was first diagnosed I became really depressed, I was sleeping all the time, all I would eat were saltines and water, I wouldn't get out of bed or move around too much, and by the time the end of December came, I was 82 pounds and losing more. I didn't want to eat because everything hurts, it still does and I pay for eating what I do. I was so sick yesterday because all I ate the night before was a bag of popcorn. Then I was throwing up and constantly in the bathroom and I was actually crying at work I was in so much pain. This disease can do weird things and it really sucks.

 

[afidz]

It sounds to me like you are in a pretty bad flare sorry to hear that. Have you considered applying for disability?
I am going to give you a link to a thread, its basically a run down on what people can and can't eat on the forum. I am sure everything bothers you right now, but it may give you an idea of what to avoid. Have you tried the BRAT diet? (FYI popcorn can be very bad for us Crohnies because the seeds and kernels can get stuck and cause problems)
http://www.crohnsforum.com/showthread.php?t=17707
Do you get stopped up pretty easily? Have you had a colonoscopy recently? Do you know where your Crohn's is? Does your doctor have any other plans as far as medication? Sorry, a lot of questions, just trying to see what I can help you with

 

[afidz]

Just doing a little research on your meds and honestly I am a little confused as to why you are on Apriso. The drug website states that it is used to maintain Ulcerative Colitis. UC and Crohn's are different diseases. UC affects only the top layer of the intestinal wall whereas Crohn's affects all layers of the intestinal wall. So, what I am assuming is happening is that the Apriso is only treating the top layer, which would explain why you feel so crappy. If I were you I would definitely bring this up with your doctor the next time you see him.

 

[rollinstone]

Welcome, I was diagnosed October last year, right after my birthday, so I know how much it sucks when things are bad because it wasn't all that long ago that I was there. As suggested above, I would ask your GI about starting some stronger medication, I.e imuran or 6mp, things will get better with the proper treatment and your life will return to normal. Hang n there.

 

[lizbeth]

Hello Theresa-Dawn, welcome to the forum, you should definitely get answers form here and a lot of support.

You and I started our crohns journey on the same day, I'm sorry that this is happening to you.

The food diary is a good idea, it will give you something to refer to and something to discuss with your dr. Request an appointment with a dietitian, in the interim Artisan gave some great info. My diet has changed from homemade curries and lots of veg and spicy foods and wholegrain breads to bland fish and cauliflower and white bread....boring! I'm diabetic too and the crohns diet is the complete opposite of the diabetes one. Great fun! Though I have been told that it may only be whilst I'm in flare and I might be able to eat real food when I'm not. I had heard that corn and corn products are notoriously bad for us too.

Have you any appointments to see your dr? if not I would suggest you request one soon, have a look at the treatment and diet sub-forums, they will give you info that maybe you ask your dr about. Write any questions down too. Good luck, really hope you get some relief very soon, take care and keep in touch.

 

[Theresa_Dawn]

Yes, I have a doctor's appointment on the 30th, not soon enough!! But I read on my medicine too and noticed that. I had a colonoscopy and endoscopy done on November 24th of last year and that's how they found it. They said it's in my small intestines and through my larger one in places, but mostly the small. I get stopped up very easily and cannot eat or drink dairy products without getting sick to my stomach and feeling like someone is ripping me apart and lighting me on fire. That's what I feel like all the time. I've tried filing for disability but they said I haven't worked long enough to get it, it really sucks though coming into work and then wasting my gas to come down here and then go home not even an hour or so later, I'm just waiting for them to fire me. I try to stay but it's so hard when it hurts. I'm going to start to keep a food diary and write down what I eat. It's going to be hard to maintain my weight now that I have to watch what I eat. I went to my family doctor today and found out I'm 111 pounds, a much better improvement than before!! Thank you guys so much for helping me with my questions! It makes me happy knowing I'm not alone in this

 

[afidz]

There are 2 types of disability, although i forget the names or what not. But, one is for people that have contributed enough to the system by working and is based upon how much you have contributed and the other is for people that have not contributed enough to the system and I believe is based on your monthly living expenses. I would consider hiring a lawyer, they don't get paid unless you win, they know the ins and outs of the system. I am personally using Binder and Binder. They are fine and all but personally wouldn't use them again because it is such a large firm it is very difficult to get a hold of someone.

 

[Theresa_Dawn]

So do you recommend Binder and Binder or try to find someone else, my mom had jan dills and she wasn't helpful at all. I'm kinda hesitant on it, lol. I'm doing okay this afternoon, not hurting too much. I have a very important question though, I have been itching from head to toe for the past 2 days and cannot stop. I haven't switched to anything new and it's a sharp stabbing pains when it itches. Is that normal?

 

[alex_chris]

Hi Theresa,

That's a rough time you are going through right now. As people have said above, what you really need is a good GI and - although that's definitely not enough in the long term - the right medical treatment.

They said it's in my small intestines and through my larger one in places, but mostly the small. I get stopped up very easily and cannot eat or drink dairy products without getting sick to my stomach and feeling like someone is ripping me apart and lighting me on fire.

My Crohn is nearly identically located and I know the feeling that you are talking about. I also have problems with dairy when I have inflammation in my bowels, specifically milk. Right now you are in pain, basically your intestines are inflamed (The whole "flare up" term is a misnomer anyway, what happens with Crohn's is that you have inflammation, flare up would only mean that it gets better and then gets worse again, but from my own experience, you can also have pain and problems on a constant basis...). To treat that in the short term you need corticosteroids (normally you get prednisolone). Although you got a doctor's appointment on the 30th, I would call your doc and ask whether you can get a prescription for that immediately and start with it - for most people that helps quite quickly.

Prednisolone is, however, no long term treatment. Long term, as someone else said above, you need either immunosuppresives (azathioprine or 6mp) or biologics (remicade, humira etc.) or a combination of the two. Unfortunately, if you want to get into remission there really is no way around that.

Drugs are only one part of the whole picture though, the rest is diet, sport, taking life a bit less serious (yep, that relieves stress ;-), looking whether you got vitamin deficiencies etc.

It's really tough considering I used to eat all the junk food and fast food and pop all the time. I can't eat anything that won't hurt me that I know of. I've tried eating lots of cooked veggies and meats that don't have seasoning on them and I still hurt.

Yeah, if you got inflammation then junk food etc. really isn't the way forward. The golden rule is the more neutral something tastes, the more likely it's actually ok for you. Have you tried porridge, polenta or just chicken with rice etc.? Simple light-dark bread with a bit of butter (potentially also a bit of honey) and some camomile tea or jasmine tea also work well in the evening or the morning as a basis for the day.

Eventually, you'll see once you get your Crohn's under control (and you will if your GI is ok and you have a bit of discipline) you end up being able to eat quite a lot of things. I am in good remission right now and quite regularly actually I eat a burger with fries and coke at some fast food joint. As long as they leave the onions out, it's not a problem... of course it's not the best thing you can do for your intestine either ;-).

I have a very important question though, I have been itching from head to toe for the past 2 days and cannot stop. I haven't switched to anything new and it's a sharp stabbing pains when it itches. Is that normal?

I have to say, I didn't have that symptom ever. I had a few times when I had a rash like skin condition at my knees and near my elbows years ago, but could never quite figure out whether it was Crohn's related. I would just ask your doc if it persists.

That's what I feel like all the time. I've tried filing for disability but they said I haven't worked long enough to get it, it really sucks though coming into work and then wasting my gas to come down here and then go home not even an hour or so later, I'm just waiting for them to fire me. I try to stay but it's so hard when it hurts.

I feel with you on work and Crohn's. When you are in pain, being at work is horrible.

If you got questions, fire away!

 

[Lustforlife]

Sarahbear is from Charleston WV too...she's on here often. This will let her know someone else from charleston is on here too.

Hope you get to feeling better soon!

 

[Theresa_Dawn]

I'm going to my family doctor I think tomorrow to find out why I'm itching like I am. I ate some ramen noodle type food earlier and it hasn't seemed to hurt me so far. Hopefully I'll be able to eat stuff like that

 

[SarahBear]

Thanks for the tag, Lustforlife!

Hi, Theresa! I'm sorry to hear you're feeling so bad.

Apriso and similar medications are often used in the treatment of Crohn's because they're considered to be safer than most other medications. Some doctors try to use them as a first step in hopes of avoiding the stronger medications. Unfortunately, they're rarely successful. It definitely sounds as if you need something more effective. The good news is this - there are quite a few other medications you can try. Hopefully switching will help you get your life back soon!

Once you find a medication (or possibly combination of medications) that works for you, you should be able to go into remission. While in remission, you should be able to resume a fairly normal diet. Hopefully that will happen for you soon - it's absolutely terrible when everything you eat causes symptoms.

I'm curious about what doctor you're seeing. Would you like to talk via PM? We may be able to give each other advice.

 

[lizbeth]

I'm glad you're going to the doc tomorrow, ask him or her about some pred while you're there, it might get you some relief until you see your GI on the 30th, good luck tomorrow, let us know how you get on.

 

[alex_chris]

I'm glad you're going to the doc tomorrow, ask him or her about some pred while you're there, it might get you some relief until you see your GI on the 30th, good luck tomorrow, let us know how you get on.

I second the pred point. You want to get better, your doc can definitely get you a prescription.

 

[Theresa_Dawn]

He didn't prescribe me anything because he's not sure what my GI is going to do. I honestly don't think he'll do anything either, I sit there and wait about an hour and then I'm in to see the doctor for about 2-5 minutes he doesn't seem to listen to anything I'm saying, he just nods and writes stuff down. He tells me to get lots of rest but I can't do that when I'm at work for 9-11 hours a day..

 

[lizbeth]

Oh dear that's very disappointing.....and frustrating having to wait so long. I'm sorry you didn't get any help. The only thing I can think of suggesting is heat pads to try and relieve the pain and cramps, I have found it helpful, I use bags you heat in the microwave when I'm at home and the when I go out I use 'Cura-heat' adhesive pads, available on Amazon. I'm still waiting on test results and for a decision about my treatment, hang in there, we will get there Really hope something turns around for you sending lots of hugs take care.:ghug:

 

[Theresa_Dawn]

Yeah I am too, I have another appointment at 1:15 because I've been throwing up all morning and I can't even keep water down. My parents were telling me that there was nothing they could do and there was nothing wrong with me, it's so awful

 

[alex_chris]

Yeah I am too, I have another appointment at 1:15 because I've been throwing up all morning and I can't even keep water down. My parents were telling me that there was nothing they could do and there was nothing wrong with me, it's so awful

Theresa, I would demand the pred. Corticosteriods aren't the best thing to take long-term, but even if you were completely healthy you could take it for a few weeks without worrying about anything really happening. There is no reason not to start with it. It's the standard therapy.

Re your parents, that's pretty fcked up if they don't believe you got serious problems.

Lastly, if your family doc doesn't do anything, is there any other doc in your area who you can visit without an appointment? I mean, why in the world should you wait until the 30th, if you are feeling pretty bad now. The few times I had a serious flare up in the past 13 years, I just went to my GI the next day - no appointment and got corticosteriods, which in my case get inflammation under control rather quickly. Waiting 2 weeks for that is absolutely irrational.

 

[afidz]

I am sorry you are going through all of this, it can be pretty frustrating. If you don't feel like your GI truly listens to you or you don't think you are being treated properly, then switch doctors. It goes along with the advice I gave you in my first post to you, be your own advocate. I really hope you start feeling better soon

 

[Theresa_Dawn]

Okay, I went to my doctor again yesterday and he gave me Zofran for my nausea and vomiting and since I started taking it I haven not thrown up once! I'm pretty happy that I've kept everything down. I have to get a referral to switch my GI over to another and I'll do that ASAP. I got my phone taken away yesterday when I went home early or I would have responded sooner! I'll keep you all updated on everything

 

[alex_chris]

Good that you are feeling a little better. Small steps, the second is to get a good GI involved, which you are taking as well.

P.S. why would anyone take your phone?

 

[lizbeth]

Hello TheresaDawn, I'm glad you at least got the vomiting sorted....I can put up with many things but vomiting and the big D (you know what I mean but I can't spell it ) are horrible.

I'm really sorry that your parents don't appear to be supportive to you As a parent myself I find it very distressing that you don't have their support, maybe they are in denial or can't deal with not being able to help you? I don't know, but just know that we are here for you and we do understand, so for now I will send you a big mummy hug :ghug::ghug::ghug: keep in touch.

 

[Theresa_Dawn]

I'm still living with my parents and I'm still I school. So if I come home early then they take my phone away (it's very childish in my opinion) and I believe so too, they don't like when I talk about it at all and my stepdad doesn't help my not eating situation at all, he honestly makes it worse but yelling at me.

 

[lizbeth]

So, what about the eating, how are you getting on with that? Have you worked out anything that you can eat? Maybe if he saw you eating something that you can tolerate he would get off your case.

I'm wondering if they take the phone away to remove any distractions so you can do your homework or something, it sounds a bit like it.

You mentioned in an earlier post about work, what job do you do?

 

[afidz]

There are a lot of parents out there that don't understand what it means to have Crohn's. They don't understand that its more than a stomach ache. From the outside looking in its no big deal. All you can do is the best that you can with the circumstances that you have been given. Try to keep your chin up and keep moving forward. Hope you feel better soon hun :hug:

 

[Theresa_Dawn]

I'm going to the store I think tomorrow so I'll buy some pasta and some rice to try, is there anything I can put on it that would be okay to use? I'm not okay with eating plain foods, lol. I work at a feed store for animals, all I do is weigh up seeds and put them on the shelves. That also means I have to pick up 25, 50, and almost 100 pounds of seeds to fill stuff up. I can't do that whatsoever because it hurts so much. I'm eating stuff like Ramen noodles and small things of noodles. I've found that eggos don't hurt for breakfast too!! My stepdad doesn't like the fact that I'm eating little things like this and not having meat in my diet, what he doesn't understand is that I can't eat marinated stuff because of all the spices in it.

 

[afidz]

When I am trying to eat bland things I will make like bow tie pasta or raviolis or something, put a little olive oil, salt and parmesan cheese on it and it usually goes pretty well. Ramen might not go well because it has a lot of spices in it, but I imagine with as sick as you have been feeling everything makes you sick so it would be hard to tell if it does or not

 

[SarahBear]

You can always eat Ramen without the spice packets added in. I've heard it's good if you add an egg or some peanut butter instead, and that would help you get a little more protein in.

Personally, potato soup is my go-to food when my stomach is upset. I just peel and cut up a few potatoes, boil them in water until they're fully cooked, then mash up about half of them with a fork. Then I pour out most of the water and pour in condensed milk in until it's the desire consistency. I do put a good amount of salt in while cooking, but usually nothing else. Since it's a very basic recipe, you can add pretty much anything you want.

Plain pasta is usually good for me, too. I top it with butter or a little Alfredo sauce (riskier because the spices in the sauce).

When I'm not feeling well, most meat makes me nauseous just on sight and smell. I don't usually eat much meat anyway. Fish tends to be easier on the stomach so I like to go that route when I can.

It sounds like you're having a lot of difficulty with your job. Could they change you to cashier or something without heavy lifting? Would looking for another, less physically demanding job be an option? If you'd like, I can try to help you find something.

 

[lizbeth]

My easy-eats seem to be fish and eggs, scrambled, boiled or omelette, they are also quick to make and easy to clean up after which is good for me (I hate doing dishes), when my sister was ill she lived on super noodles and cup-a-soup.

It really is frustrating not being able to eat the things you like, is there any chance he would understand if you explained that it's possibly just until you get your tummy settled. I know they don't want to talk about it though so I realize it might not work. I tested the waters tonight with some coleslaw and boy I wish I hadn't :lol: I'm a bit funny with meat, I can't eat beef unless it's ground and most other meats make me unwell too, they smell funny to me now, I wonder is it the bodies' way of putting me off eating them?

It's a great idea asking for a job with lighter duties, even if it's only short-term cos it would help take the pressure off a bit and it would also show your boss that you really do want to work and that you don't like having to take time off.

 

[alex_chris]

Hey Theresa,

Hope you are doing well. Good luck with your appointment tomorrow. I wish you'll end up have a constructive discussion on better managing your Crohn's.

Cheers,
A