Newly Diagnosed, Deeply Confused, and Angry

[dontmesswithmrwest]

I've never been more overwhelmed in my life.

I got diagnosed about 7 days ago...well, kinda. Which leads me to my first question. The GI first said that bloodwork was next to useless to here for diagnosing Crohn's. She says I the colonoscopy shows severe inflammation, but she needs me to get bloodwork to determine what it is.

However, I asked the GI and she said that it couldn't be anything else besides crohn's or UC. So why do I need bloodwork? I thought most people get diagnosed with the colonoscopy? And doesn't this contradict what she said earlier about bloodwork being pointless?

She then said that Crohns was basically no deal and fairly common. That's the last thing I needed my father to hear. Both of my parents have been yelling at me for being lazy and being a wimp, but the truth is I barely have the energy to get out of bed (and this is coming from a very ambitious person who used to wake up at 5:30, knock out pushups and squat then get started on working on my successful business).

My parents have been downright cruel in the past so this isn't surprising. I also know that their insults have no basis in reality (for instance saying I would be a bum on the street even though I was bound for a top 1 percent college). However, I can't take it in this state. I worked my butt off to make my own money (through my own business) so I could leave their pernicious influence behind and now I have to rely on them again and deal with their crap. It's very frustrating. Before this diagnosis I was consistently happy for the first time in my life, and no I'm back to dealing with this crap.

My GI prescribed pred and didn't say anything about potential side effects. At first, I finally had energy and wasn't in pain constantly. By the third day however, I could barely sleep. The 5th day I started being very, very irritable with anxiety. However, by far the worst side effects were the suicidal thoughts. I've been through a lot of bad stuff but I've never been suicidal, but I found myself seriously considering suicide, even looking up the potential ways to do it and trying to scour pills.

Of course, the recent overwhelming diagnosis, pain, and verbal abuse of my parents weren't helping, but I know for a fact that I wouldn't be having these thoughts without the pred. When I was laying down, enjoying the thought of death, something snapped and I realized that pred was the reason for these thoughts. I went downstairs and threw the bottle into the woods in anger (not smart but I haven't been thinking clearly at all - even right now I have severe brain fog).

I've been off it for a couple of days and my symptoms are back; however, I prefer that to killing myself. Even though I'm in a lot of pain and everything is as terrible as ever, I don't have suicidal thoughts anymore.

I'm terrified, exhausted, angry, and have no support from anyone. All of this has came on too fast. Reading other people's stories with this terrible condition has not helped. My mental and physical state are at an all time low and I feel helpless.

The only thing I know I should do is call the GI tomorrow and tell her I stopped the pred due to extreme emotions.

If you read or skimmed this (thanks by the way :thumleft any ideas on what I should do next? I still don't have a diagnose and I'm too scared to take the only meds I was prescribed.

 

[aideen33]

Im still new myself but im told that there are some blood tests that can help distinguish between Crohns/UC and as far as I know there are some meds that can be better for one vs the other (Veterans please correct if Im wrong here)

DEFINITELY call the GI cause stopping prednisone cold turkey is no good but there may be things she wants to try.. but frankly... if shes telling you its no big deal, Id be looking for another doc if thats an option for you?

 

[dontmesswithmrwest]

Im still new myself but im told that there are some blood tests that can help distinguish between Crohns/UC and as far as I know there are some meds that can be better for one vs the other (Veterans please correct if Im wrong here)

DEFINITELY call the GI cause stopping prednisone cold turkey is no good but there may be things she wants to try.. but frankly... if shes telling you its no big deal, Id be looking for another doc if thats an option for you?

Okay, that makes sense now thanks. I assume she's determining if it's Crohns or UC. I was confused because she didn't explain that and most people online seem to report that they were diagnosed purely from the colonoscopy.

I think I am going to switch. I didn't get good vibes from this doctor. I wake up from the procedure and she says I found severe inflammation, but it's not really a big deal, and here take this strong medicine without any explanation.

Coming off pred shouldn't be a problem. I was only on it for 5 days. People take it for short periods of time then come off without tapering. I've even witnessed this when my brother was on it for asthma. Of course, it's not good that I have tons of bleeding/bowel movements now. I need to get that addressed as soon as possible, but considering I've been living with this for months a few more days won't do any damage.

 

[Layla]

If you have to go back on Pred (highly likely to get the inflammation under control) Ask to also be prescribed amytriptiline. I've found this helps enormously for both sleeping and taking the edge off the aggression and irritability issues.

Blood tests can also be used show the level of inflammation, anaemia, vitamin deficiencies among other things, I'm on weekly bloods atm because I'm on Azathioprine.

Good luck with finding a new doc and you parents!

 

[Tesscorm]

Sorry you're having a tough time right now.

Just a few thoughts...

I'm sure you understand pred is used to induce remission and then maintenance medications will sustain the remission. Many of the maintenance meds take some time to work and pred will work while the maintenance meds are building up in your system. Have you discussed a maintenance med with your GI?

If you can't tolerate pred, ask your GI about entocort. It is another steroid, however, it works more specifically in your bowels and has few overall side effects (however, entocort doesn't work as well in all areas of the intestinal system so, it's use will be dependent on where your crohns/uc is located).

Exclusive enteral nutrition can also be used to induce remission. This is a formula only diet that will provide all your necessary nutrition. It's not an easy treatment as it generally requires that you eat no food, formula only, for six weeks. However, it has no side effects, it's success rate at inducing remission is comparable to steroids, it has mucosal healing properties (which steroids do not have), provides bowel rest and all necessary nutrition. This is what my son did and he responded very well to the treatment.

You said you just stopped taking pred? I'm not very familiar with pred but I do know you need to 'taper' down from pred, not just stop suddenly. It may have something to do with your adrenal gland?? I'm going to tag Dusty, MLP, xmdmom, baistuff... hopefully, they'll be by and will provide a bit more info.

Re Crohns vs. UC - I don't know of any blood test that can determine one from the other. I am assuming your inflammation is limited to your large colon? Because UC is limited to only the large colon - if you have inflammation anywhere else, it can't be UC. Although you can have crohns in the large colon - this would be crohns colitis and is different from ulcerative colitis. Some of the differences between the two - crohns' inflammation is 'patchy' and might be found in numerous places while UC inflammation would be continuous; also, crohns inflammation extends into the intestinal wall while UC inflammation is only on the surface of the wall. My understanding is that if your inflammation is limited to your large colon, it is sometimes difficult to determine which it is - and I not aware of a test that can definitively dx UC vs crohns?? However, most of the treatments would be very similar.

It would be a good idea to have vitamin levels tested - when there is active inflammation or scarring, malabsorption may be an issue. Vitamin/mineral deficiencies can be adding to your symptoms, ie fatigue.

For now, until you can see your GI, if you are having pain or difficulty eating, try to eat low fibre/residue foods (if you google or look on the diet section here, you should easily find ideas on what foods would be safe for now), you can also drink the nutritional shakes - Boost, Ensure - both to replace some meals (easier to digest) and as a supplement to your diet to give you some additional nutrients. But, I am not recommending you try exclusive enteral nutrition (ie eliminate all foods) without doing it under the guidance of your GI.

Lastly, I'm sorry your family doesn't understand how you're feeling. I wish you had a bit more support from them. :ghug:

Once you have the right treatment and get yourself into remission, you will feel better and will be able to get back on track with your life!! Here's a link to the success stories sub-forum - it may help to read of others who have found remission and have moved on to enjoy a normal, healthy life! http://www.crohnsforum.com/forumdisplay.php?f=72

There are many great members here - please don't hesitate to come for support and to ask questions!!!

:ghug:

 

[Jmrogers4]

Agree with Tesscorm about looking into EEN, my son did pred when he was first diagnosed but did EEN last year to fight off a flare as he absolutely refused to do a full course of pred said he hated the way it made him feel. He did do a 5 day burst of pred prior to the EEN to see if it would work. That being said it's a good idea to check with your doctor before stopping any med cold turkey.
Please do check out the success stories. My husband was diagnosed over 20 years ago and has been in remission for the last 13 years. My son is coming on a year. For both of them it was a matter of finding the medicine that worked for them. Hubby is on Imuran (Azathioprine) and son is on Remicade.
Not sure about the blood tests, my son did have a test called the Prometheus diagnostic which just basically tells if you have blood markers/genes consistent with Crohn's or UC but I have never heard of it actually being used for a diagnosis.
The biopsies taken during colonoscopies were used to confirm diagnosis for both my husband and son. For what it's worth my son's blood labwork is always in the normal range so does not tell us anything.

 

[Tesscorm]

You mentioned in another post that you have been using kratom. How does that fit in with your symptoms mentioned above? If you are continuing to suffer from symptoms, do you still feel kratom is helping you?

I hope you can get an apptmt with your GI soon to try to find a treatment to help alleviate your symptoms.

 

[DustyKat]

I’m so sorry to hear of all you are going through, both health wise and with your family.

You have been given great advice so I will just pick up on a couple of points.

Prednisone - As long as it taken for no more than 7 days then you can stop it cold turkey without ramifications.
As Tess has already mentioned, has Entocort (Budesonide) been mentioned as an alternative for you? It is also a steroid but tends to work topically on the bowel rather than systemically, so significantly far less side effects. It can still produce Prednisone like side effects but more so if used over an extended period of time. The only down side is it may not be as effective as Pred. Perhaps use this in conjunction with EEN?

Blood tests - I would say the GI is referring to the Prometheus test (ASCA). This is not a diagnostic test and it is far from perfect but if you have the markers and it is accurate it does distinguish between UC and Crohn’s. I assume you have large bowel disease only, otherwise it would not be needed, and she is looking to verify exactly which it is. Biopsies would be the thing that would give a more definitive answer.

I must say her attitude toward IBD is pretty crass to say the least. It is this sort of complacency from the medical profession that has the potential to place patients into a false sense of security. :yfrown: I personally would start looking elsewhere.

Thinking of you. :ghug:

Dusty. xxx

 

[dontmesswithmrwest]

You mentioned in another post that you have been using kratom. How does that fit in with your symptoms mentioned above? If you are continuing to suffer from symptoms, do you still feel kratom is helping you?

I hope you can get an apptmt with your GI soon to try to find a treatment to help alleviate your symptoms.

I haven't been using kratom for a couple weeks. When I've been on it, I feel much much better I started using it today and am much better off.

Why I haven't been using it is kinda complicated. My GI told me not to use it before the colonoscopy so I came to my parent's house without it. I assumed that I would be back at my apartment the day after the procedure.

Unfortunately, my parents flat out refused to take my back for a long time despite the fact that I repeatedly told them that kratom helped a lot and it was back at my place. My dad refused out of principal saying my mom should take me back since he brought me. My mom kept having things to do or was too tired.

Hope that clears things up. I'm really hoping that the kratom helps get the symptoms under control temporarily while I figure out the next steps in treating my illness.

 

[dontmesswithmrwest]

I’m so sorry to hear of all you are going through, both health wise and with your family.

You have been given great advice so I will just pick up on a couple of points.

Prednisone - As long as it taken for no more than 7 days then you can stop it cold turkey without ramifications.
As Tess has already mentioned, has Entocort (Budesonide) been mentioned as an alternative for you? It is also a steroid but tends to work topically on the bowel rather than systemically, so significantly far less side effects. It can still produce Prednisone like side effects but more so if used over an extended period of time. The only down side is it may not be as effective as Pred. Perhaps use this in conjunction with EEN?

Blood tests - I would say the GI is referring to the Prometheus test (ASCA). This is not a diagnostic test and it is far from perfect but if you have the markers and it is accurate it does distinguish between UC and Crohn’s. I assume you have large bowel disease only, otherwise it would not be needed, and she is looking to verify exactly which it is. Biopsies would be the thing that would give a more definitive answer.

I must say her attitude toward IBD is pretty crass to say the least. It is this sort of complacency from the medical profession that has the potential to place patients into a false sense of security. :yfrown: I personally would start looking elsewhere.

Thinking of you. :ghug:

Dusty. xxx

First off. Thanks to everyone who has replied. I can't emphasize enough how much I appreciate the information and support. I particularly appreciate linking to success stories. It feel like it's important that I inform myself and understand the potential problems, but at the same time, it's vital to understand that there are a large amount of people who have seen great success living with this condition.

Dusty, yes, it is the prometheus test and a number of other blood tests. I'm confused in regards to this for two reasons 1. she did biopsies so if that is more definite than bloodwork what's the point? (please correct me if I'm misunderstanding this) 2. She is testing me for a number of things that seem completely irrelevant to me. I would be happy to get tested for vitamin D for instance, but she is testing for HIV, hepatitis, STDs like I told her I shoot up dope and have tons of unprotected sex (none of which are true :ybiggrin Does anyone know why this is?

I am going to switch GIs. I left her a message telling her I had problems with the pred including deeply disturbing suicidal thoughts. The nurse responded saying I should basically "tough it out." She did mention the other steroids but it will take about three weeks to get it approved. They also got the dosage wrong. The nurse said that maybe I should cut down from 10 mg to 5 (I'm on 40).

I've decided that I want to attempt to use MM + diet as the foundation of my treatment (EEN also seems like a scary yet viable option that I will consider). I know that for some this isn't enough. Don't get me wrong. If I have to use artificial treatments I will. But this is what I'm going to try first.

For this reason, I am planning on moving to a MM state (doing a ton of research but right now I am considering Denver, Colorado) and finding a quality GI there.

In the meantime Kratom is a godsend for symptoms.

 

[DustyKat]

Dusty, yes, it is the prometheus test and a number of other blood tests. I'm confused in regards to this for two reasons 1. she did biopsies so if that is more definite than bloodwork what's the point? (please correct me if I'm misunderstanding this) 2. She is testing me for a number of things that seem completely irrelevant to me. I would be happy to get tested for vitamin D for instance, but she is testing for HIV, hepatitis, STDs like I told her I shoot up dope and have tons of unprotected sex (none of which are true ) Does anyone know why this is?

I can see why she may want gather as much information as possible when making a diagnosis, particularly if you have large bowel involvement. I would tend to look at the Prometheus as a complimentary test to the biopsies and just run with it.

I would have no idea why she is ordering the other tests except to say that your age, and I assume you are sexually active, may be a deciding factor here. HIV, STD’s and Hepatitis all have the potential to cause Gastrointestinal symptoms and since any diagnosis is a process of elimination perhaps she covering all bases so as not to miss anything before giving you the IBD diagnosis.

Good luck with whatever path you choose!

Dusty. xxx

 

[UnXmas]

If you have to go back on Pred (highly likely to get the inflammation under control) Ask to also be prescribed amytriptiline. I've found this helps enormously for both sleeping and taking the edge off the aggression and irritability issues.

Blood tests can also be used show the level of inflammation, anaemia, vitamin deficiencies among other things, I'm on weekly bloods atm because I'm on Azathioprine.

Good luck with finding a new doc and you parents!

I second the recommendation of Amitriptyline - I first took it to stop prednisone-induced insomnia and it cured that and worked wonderfully as an anti-depressant. But what I learned from finding Amitriptyline, is that you often can find medications that help you, and ways of dealing with side effects, if you and your doctors do enough trial and error. I tried a number of sleeping meds before finding the one that happened to be right for me. If you do go back on prednisone, see your doctor about any side effects that you want help with before giving up on it. However, prednisone can cause psychiatric problems, and that may mean it's not suitable for you. It's unlikely stopping prednisone suddenly will do you any harm when you've only been on it a short time.

Your doctors implying that the disease is no big deal: I obviously can't say what the reasons were for your doctor, but I've found that there are various reasons for doctors to adopt variations of this view, not just with Crohn's but with various medical conditions that I have. Doctors have to detach themselves a lot of the time; they may be treating it as not so bad in order not to make you worry; they may see it as no big deal in comparison with some of the other conditions they deal with (Crohn's is treatable and most can live a normal life with it, work etc. much of the time), and it is one of the more common digestive disorders, which means there is a lot of knowledge about prognosis and the best ways to treat it, and a lot of support for it available online. Some doctors have a terrible bedside manner, but are still excellent doctors. My (wonderful) surgeon treats my surgeries as no big deal. They're just his job to him, and he always tells my mum off for worrying. If you've really got strong feelings that you want to switch doctors, though, trust your instincts. Not explaining side effects to you, and not explaining why particular tests were ordered, are important problems with how you're being treated. However, remember that the problems you had with prednisone side effects don't necessarily mean it was wrong to prescribe it for you - finding the right treatment can be difficult for any doctor sometimes.

It's very important to find a doctor you trust, as you shouldn't be having to take responsibility for deciding on treatment options on your own. I would advise you not to rely on MM and diet for treatment. You've had a bad experience but don't give up on doctors and medication; when you find the right doctors, who can help find you the right treatments, it can help you so much.

As for parents, again I obviously don't know yours, but unless they've done something truly terrible, if there's any way you can salvage a good relationship with them, hang on to it. Forgiving them for treating you so badly, may make your life easier. How old are you, if you don't mind me asking?

One final thing: moving to a different state because of MM and a new GI seems a very extreme thing to do. Are there other factors influencing this decision?

 

[dontmesswithmrwest]

I second the recommendation of Amitriptyline - I first took it to stop prednisone-induced insomnia and it cured that and worked wonderfully as an anti-depressant. But what I learned from finding Amitriptyline, is that you often can find medications that help you, and ways of dealing with side effects, if you and your doctors do enough trial and error. I tried a number of sleeping meds before finding the one that happened to be right for me. If you do go back on prednisone, see your doctor about any side effects that you want help with before giving up on it. However, prednisone can cause psychiatric problems, and that may mean it's not suitable for you. It's unlikely stopping prednisone suddenly will do you any harm when you've only been on it a short time.

Your doctors implying that the disease is no big deal: I obviously can't say what the reasons were for your doctor, but I've found that there are various reasons for doctors to adopt variations of this view, not just with Crohn's but with various medical conditions that I have. Doctors have to detach themselves a lot of the time; they may be treating it as not so bad in order not to make you worry; they may see it as no big deal in comparison with some of the other conditions they deal with (Crohn's is treatable and most can live a normal life with it, work etc. much of the time), and it is one of the more common digestive disorders, which means there is a lot of knowledge about prognosis and the best ways to treat it, and a lot of support for it available online. Some doctors have a terrible bedside manner, but are still excellent doctors. My (wonderful) surgeon treats my surgeries as no big deal. They're just his job to him, and he always tells my mum off for worrying. If you've really got strong feelings that you want to switch doctors, though, trust your instincts. Not explaining side effects to you, and not explaining why particular tests were ordered, are important problems with how you're being treated. However, remember that the problems you had with prednisone side effects don't necessarily mean it was wrong to prescribe it for you - finding the right treatment can be difficult for any doctor sometimes.

It's very important to find a doctor you trust, as you shouldn't be having to take responsibility for deciding on treatment options on your own. I would advise you not to rely on MM and diet for treatment. You've had a bad experience but don't give up on doctors and medication; when you find the right doctors, who can help find you the right treatments, it can help you so much.

As for parents, again I obviously don't know yours, but unless they've done something truly terrible, if there's any way you can salvage a good relationship with them, hang on to it. Forgiving them for treating you so badly, may make your life easier. How old are you, if you don't mind me asking?

One final thing: moving to a different state because of MM and a new GI seems a very extreme thing to do. Are there other factors influencing this decision?

Thanks for the response.

Perhaps the reason I am so reluctant to get on drugs (besides this scary experience with pred) is that my mom has multiple autoimmune disorders and absolutely hates the drugs. Of course, if I have to take them then it's better than the alternative, but it seems logical to me to try MM first. After all, once you get on Remicide for instance you can't stop then start again correct?

As for moving states, it doesn't seem like a big deal to me. I am 19 and a freelance writer and entrepreneur who is (well was. I've been so fatigued - like can barely get out of bed or stand fatigued - that I barely get any work done). making enough to pay the bills and save money. I work online so I can move anywhere in the world.

I've been wanting to move anyway. I'm tired of the college town partying/hookup lifestyle. Don't get me wrong, it was fun at first but I've gotten very bored with it and it feels empty to me. I would much rather focus on achieving my goals and enjoy living in a city. I was actually planning on moving internationally but I decided to move in locally with friends instead once symptoms started.

I also took into consideration those reasons for her saying "it's no big deal." Logically, this GI doesn't seem great, but she definitely doesn't seem bad either. However, my gut just seems to tell me that I would be better suited elsewhere.

As for my parents it would be wrong to only talk poorly of them. They have loved me and provided for me and deep down I believe they care. However, they are a downright terrible influence on my life. They are control freaks to the extreme and constantly bully me (telling me no one likes me, I'm a loser, something is wrong with me, I'm not "normal", etc). Their bullying has no basis in reality (I am very ambitious, went to a top college on scholarship, am popular, do well with girls, workout regularly, etc), but it still bothers me - mainly because they are trying to be hurtful.

I've really tried to maintain a relationship with them. Trust me, many times I've decided I can't have them in my life anymore, but I always forgive and forget; however, I basically always regret it and wonder if this is finally the last, last straw. I know they can provide valuable support though, but at what cost to my pride and mental health is the question.

I really hope I'm not providing too much info and wasting your time. I just don't want you to get the wrong picture.

 

[dontmesswithmrwest]

I can see why she may want gather as much information as possible when making a diagnosis, particularly if you have large bowel involvement. I would tend to look at the Prometheus as a complimentary test to the biopsies and just run with it.

I would have no idea why she is ordering the other tests except to say that your age, and I assume you are sexually active, may be a deciding factor here. HIV, STD’s and Hepatitis all have the potential to cause Gastrointestinal symptoms and since any diagnosis is a process of elimination perhaps she covering all bases so as not to miss anything before giving you the IBD diagnosis.

Good luck with whatever path you choose!

Dusty. xxx

Thank you so much for clarifying that Dusty. That really helps. I love this forum. I'm going to stick around so maybe one day I can be a success story and help others much like you and others do around here.

 

[steph_irish]

Hi there I just had to message you and give you some form of support and to tell you to stick with it. I was diagnosed almost a year ago. Like u I was classed as lazy and a hypochondriac.
People just dong get it. Your parents aren't the most supportive. You will get lots of support on this forum. We've all been where you are.
Its scary but medication is good. I went on pred for 2 months amazing stuff but the side effects are wicked.
I found the gym helped with frustrations. It was the only medication to promote remission. Thankfully I'm still there.
Chin up things will start to fall into place. You will find new normal.

 

[UnXmas]

Thanks for the response.

Perhaps the reason I am so reluctant to get on drugs (besides this scary experience with pred) is that my mom has multiple autoimmune disorders and absolutely hates the drugs. Of course, if I have to take them then it's better than the alternative, but it seems logical to me to try MM first. After all, once you get on Remicide for instance you can't stop then start again correct?

As for moving states, it doesn't seem like a big deal to me. I am 19 and a freelance writer and entrepreneur who is (well was. I've been so fatigued - like can barely get out of bed or stand fatigued - that I barely get any work done). making enough to pay the bills and save money. I work online so I can move anywhere in the world.

I've been wanting to move anyway. I'm tired of the college town partying/hookup lifestyle. Don't get me wrong, it was fun at first but I've gotten very bored with it and it feels empty to me. I would much rather focus on achieving my goals and enjoy living in a city. I was actually planning on moving internationally but I decided to move in locally with friends instead once symptoms started.

I also took into consideration those reasons for her saying "it's no big deal." Logically, this GI doesn't seem great, but she definitely doesn't seem bad either. However, my gut just seems to tell me that I would be better suited elsewhere.

As for my parents it would be wrong to only talk poorly of them. They have loved me and provided for me and deep down I believe they care. However, they are a downright terrible influence on my life. They are control freaks to the extreme and constantly bully me (telling me no one likes me, I'm a loser, something is wrong with me, I'm not "normal", etc). Their bullying has no basis in reality (I am very ambitious, went to a top college on scholarship, am popular, do well with girls, workout regularly, etc), but it still bothers me - mainly because they are trying to be hurtful.

I've really tried to maintain a relationship with them. Trust me, many times I've decided I can't have them in my life anymore, but I always forgive and forget; however, I basically always regret it and wonder if this is finally the last, last straw. I know they can provide valuable support though, but at what cost to my pride and mental health is the question.

I really hope I'm not providing too much info and wasting your time. I just don't want you to get the wrong picture.

It sounds like there are other factors driving your move, which is good to hear. A Crohn's diagnosis means that a person probably shouldn't plan on moving to a distant country with no health care system, but beyond that, it shouldn't really influence where someone chooses to live. You're so recently diagnosed too, you've no idea what treatments may end up working for you, and many people with Crohn's change treatments (and doctors) many times as their disease and other circumstances fluctuate. MM shouldn't dictate where you live.

From your posts it sounds a bit like you feel you should be perfect, and that Crohn's may be making it more difficult for you to be so. Crohn's is not the sort of illness that should stop you living a normal life. Most likely, you will have good periods of remission or when the disease is under control enough for you to continue with the career, social life, fitness goals or whatever that you had before you got sick. You might need to make a few adjustments, there might be bad times when you have to put other things aside for a while, but all the traits you have (determination, etc.) you can put into helping you learn to live with this disease. The things you achieve with managing this illness may not be as obvious to others as scholarships and your career, but you'll know how much you are achieving when you do things despite being exhausted and in pain - enduring pain, sickness and exhaustion is an achievement in itself - and people close to you should realise this too.