Newly Diagnosed with Crohn's--Just looking for comfort I suppose

[Praying247]

Well where do I start... All my life I've been sick. I always seemed to get sick all the time. It was always hard for me to do the things I wanted to because I would get sick. I never thought much of it until I got sick while visiting my boyfriend in Pittsburgh. I was supposed to leave on Sunday, May 27th 2012 to return home. But all of sudden I started throwing up and feeling so weak and nauseous. I couldn't return home until Tuesday the 29th, and scheduled a doctor's appointment the following day. I gradually started to get more symptoms.

I realized I had lost my appetite to eat food, and when I did eat I couldn't keep the food down. Obviously that lead to weight loss, which is bad considering that I'm 17, I weighed 125 and now weigh less than 118. I started to have diarrhea, headaches, joint pain, shortness of breath, and just all over weakness. I have weird marks all over my body, like bruises and rashes. I have no idea what's going on.

I am writing this because my symptoms have just severely gotten worse. I don't know if it was because of my CAT SCAN today with an injection of an IV contrast. Or if my symptoms are just getting worse.

I have a family history of Crohn's Disease, and never thought of it before, until now. Now that I have it. I see all the things it can do to your body and for me esspecailly my self-confidence. I have totally lost confidence in myself. I don't think I look pretty, and I don't feel like I can do things I once loved to do, all because of Crohn's.

I guess I'm just looking for some comfort in this difficult time. I was just diagnosed on June 16th, 2012. I still have scopes scheduled for July 12, 2012 to further look into exactly what's going on with this disease.

I'm not scared, I believe God will take care of me and know that he will get my through this. But I worry for those around me. My family seems to be in denial with this whole situation, even claiming that it's all in my head, this is the side of the family where Crohn's never existed. They have no idea what this disease is like and aren't very supportive in this tough time.

My boyfriend, on the other hand, I too think was in denial until last night, when it finally hit him what Crohn's does to a person, not only physically, but emotionally. It not only effects the person going through it, but also the people who care so greatly for that person.

I guess I'm just looking for advice and comfort on any of these issues I brought up. Any advice and comfort is better than none.

Thanks for reading this and leaving your comments. :ysmile:

 

[KayleighMeek]

Hey,
I'm sorry to hear you have been through such a tough time this disease can be awful. If your family are still struggling to come to terms with what is going on ask your GI doctor if they have any information booklets they can give you to pass onto them. They have these in the GI office where I go and they can be really helpfull to get people to understand everything that you have been through.
I completely understand how you feel when you don't feel pretty this has happened to me and a lot of other people with the disease. You feel like it is ruining your body, health and the way you look. Hopefully once you have been through all your test and they decide the best treatment plan you will start feeling better about yourself again. It took a long time for me to accept my body changing weight all the time and looking very ill but I'm now on a medication that is working well and I am feeling a lot more positive.
Hope they find something that helps with this for you so you can get back in good health x

 

[David]

Hi there and welcome

I'm sorry you're not getting the emotional support from your family that you deserve. That's unfortunate What may work for you is educating the heck about yourself on this disease. Become an authority on it so that you can speak to your family with authority and confidence. If they try to detract from the seriousness of this disease, you'll be able to respond with reputable information. And of course this will also let you advocate for yourself as you get treatment and ensure you're getting the standard of care you deserve.

We're here for you. At the very least, you're amongst those who understand.

*hugs*

 

[Praying247]

Thanks for the responses guys! I'm going to my doctors tomorrow and will def. look into those little packets! I'm bringing up some medication so I can hopefully start soon! And thanks for lifting my spirits!

 

[Keepingfaith]

Hello! Welcome to the forum!
There are a lot of supportive people on the forum who probably know the answer to 90% of your questions.

I was diagnosed last year at 15 but like you, have been sick since I was a toddler. I deffinately get what your saying about loved ones not understanding: This condition affects everything from your joints, to emotions, to your GI tract etc. etc. Give him some time to adjust and I'm sure your boyfriend will understand. If he's anything like my friends, he's just in denial and doesn't want to believe this is happening to you. My family, fortunately, have seen how debilitating this disease is for me & they understand. After losing around 90 pounds in the last year, it's hard to deny I'm sick. The best advice I can give you is understand this disease effects them also. All they want to do is help when all you want to do is be left alone. Very frustrating.

If you ever need to talk, I'm an email/message away !
Take care & I pray for my fellow Crohnies often!

 

[PlutoCronie]

:hug: to you, Praying 247. You are in my prayers. I also wanted to mention that I am one of the Crohn's victims who is having good luck with alternative remedies. Check out some of my posts for info. Take care.:heart:

 

[Praying247]

Just as an update for you all...

I am trying to move up my scopes date. Right now it is scheduled for September 13, but I can't wait that long. I went through a little time in remission, a little over a week, wasn't 100% but felt so much better and was able to eat! I gained back 4lbs! But, yesterday I relapse and it's been so much worse... Just like before...

 

[David]

I hope they're able to move it up for you.

 

[Snoflayk505]

I am happy you found this forum I also have had great success with alternative (chinese) medicine as well as diet. If you are interested in chinese medicine, you could look for an acupuncture college near you and ask if they have an herb clinic. The colleges always have like 20$ rates cuz the students (they are supervised) are learning to treat.
Good luck to you and I hope you find relief.

 

[tots]

I have been sick my whole life. My parents say I was never sick as a child EXCEPT for all
the severe stomach cramps- vomiting and diarrhea. Hmmmmm..... Granted there is no
history of CD in my family. (I think). I was diagnosed 20 yrs ago at the age of 28. I STILL
have family that just "dosent get it". I have started emailing them articles on CD- I think
I have gotten more confidence since I have joined this forum! It might be worth a shot.

Lauren

 

[Praying247]

Thanks for all the support! Today was a really tough day. I didn't leave the house. Yesterday my stomach started to expand and didn't go back down. I'm guessing it was inflammation from Crohn's obviously and some bloating. It was soft and tender to the touch, not a blockage or anything serious. It has slowly subsided today, but left me feeling awful.

 

[EthanPSU]

Hey, Hope ya feel better soon. I often get some bloating also with crohn's. Especially if I eat a food that doesn't sit well. But it usually goes away in a day or so

 

[Lucinda]

I just found this forum today while looking for something else. I read your story and my heart broke for you because I remember all those feelings you describe. Fear, frustration, lack of confidence, etc. I was older than you when diagnosed but I remember how hard just being a teenager is. I can't imagine being a teen with Crohn's.

I can tell you that there will be good times and bad times but this isn't life ending. Just life changing. Like others said, find support both online (hey, you've done that already! Yay for you!) and in real life. That will make all the difference. Read all you can because that will empower you, something very important when having a disease that. Can make you feel powerless. Find acceptance. That will take time and is a constant process. You do not just wake up one day and say " Oh, I am sick but that's ok." instead it is a daily thing of accepting where you are that day. Embrace the good days (there will be many) and remember the bad days always end.

As for bloating, that is pretty common. I have pants in multiple sizes because I frequently go from looking like a skinny minnie to four months pregnant in a matter of hours.

You already sound so smart about this. I pray you get your tests sooner. In the meantime, embrace soft foods, bad tv,pants with elastic waistbands, and corny jokes. Good luck!

 

[Praying247]

Thanks Lucinda! That was great advice and support! I actually went to a kidney specialists today. I have a sponge kidney, which some people have, you're born with it so it's not like I did anything wrong, but this means I can be more prone to kidney stones. I haven't had any yet. My doctor said to drink about 3 Liters everyday. This will make it less likely for me to get kidney stones. And as for my medication they will not affect my kidney. I guess this is good news. haha.

 

[KatyBuckeye]

I read your story and I'm sorry that you're going through such a difficult time. How did your scopes go? I was also recently diagnosed and it's been tough. I know that when I told my family, I felt like they were a bit withdrawn at first. I think that it was just shocking to everyone, especially my parents. No one wants their children or loved ones to suffer. And some people just don't know what to say or how to act around those that are ill. My family seems to have mostly snapped out of it though. I think that it helped to educate them about the disease, as another poster recommended. Good luck to you and keep us updated on your progess.

 

[beachy9212]

You will be just fine I promise. I got diagnosed with Crohn's when I was 15 and I thought it was literally the end of the world. My friends didn't understand, and although my family was supportive I didn't really feel as though anyone really understood what I was going through. I managed my disease throughout high school, and I noticed that I got sick when preparing for college stuff. You said you're 17 so I assume you will begin preparing for all of that kind of stuff right about now and here is a word of advice. Stress is known to cause flare ups and I try to not take any meds other than my Crohn's medicine. However, my doctor prescribed Atenolol for anxiety because it's not a very strong anti-anxiety med. It just keeps my thoughts calm and I don't get a nervous stomach from it. I am 20 now so dealing with college and boyfriends and jobs is tough, but believe me; if I can do it, you sure as hell can. Getting diagnosed doesn't mean your life is over; it means you're life is just starting a new chapter. You'll be okay I promise, and anytime you want to talk feel free to let me know. Remember that just 5 years ago, I was in the exact same position as you.

 

[Peace_and_Charm]

I am so sorry to hear of your story. Let me share something I never have forgotten. It was 30 years ago, when I first started having symptoms. I was wasting for 3 months, and none of my local doctors had a clue what was wrong - they diagnosed Peptic Ulcer. I was 17.

My family was struggling to understand. They actually questioned me if I could be anorexic. Never forgot that. It underscores that we are a family of sorts here - no one understands what we go through except us.

It was only after a 2 week admittance to NYU Medical center that Crohns was diagnosed. By the time I had surgery (after a brief remission through aggressive Prednisone treatment), I had wasted from 175 lbs to 130. This made the surgery extremely difficult to recover from.

My advice would be this from my experience: peacefully retreat from those who can't support you and FIND people who will. Surgery is sometimes the only option, but make it the last option. One surgery will likely lead to a second - it did for me, due to scar tissue. But had I not had the 1st surgery I would be dead for 30 years already (an absess the size of a small football developed in my back - peritonitis is lethal, Crohns is not). I have been able to have a successful career and a wonderful son. I am divorcing because my wife cannot be supportive to me (she has never been ill in her life). I tell you this because her coldness has caused me many flares that would never have happened if I were with the right person. Our illness is not easy for healthy people to understand or deal with.

Drink a lot of water, try ensure and manage a low residue, low fiber diet religiously. You will make it fine. Don't be afraid to take medication for pain or anxiety - in the words of my dearly departed surgeon John Ranson - "take the medicine when you need it. Don't fool yourself."

The best of luck with all of this, you will be fine

 

[tinah]

I was young when I started my struggles with crohns. I know about the issues from being single/dating and having to explain things about your health. It wasn't too much fun. I am now married (16 years). I met my husband 3 weeks after my ileostomy was made permanent. He has been very understanding.
As for the family that isn't so understanding-I've had that too. My mother has never accepted this disease or its complications. She has always been embarrassed by my illness like I am defective. She even tried to get one hospital to throw me out while I was very ill because she thought it was in my head and the doctor had ulterior motives! I can laugh about all that now, but it made life harder then. I guess my message is don't give up and keep going, it can get better and you will probably find you are stronger than you think.

 

[Peace_and_Charm]

Thank goodness for your husband. Having a good partner like that is a God-send (especially from my point of view, not as lucky as you on that score).

No one understands how it can hurt when your Mother reacts like that. It is profound and unforgettable. It is also impossible for me to understand, I don't get it. In my case, once the enormity of the illness dawned on my mother, she racked herself with guilt (which made me feel worse...).

What can you do, we are all imperfect.

Be well always

 

[tinah]

It's too bad your spouse is non supportive. It can be much lonelier to be with someone such as that than to be alone (in my experience). My husband has been supportive as far as accepting the ostomy situation, but not so much with other health issues. I am dealing with a difficult health situation right now and he has just turned the switch off. He says this is the only way he can cope. I have been to the ER 2 times in the past 3 days. Many tests done and more to come. They suspect it could be caused by nerves in my spine affecting my bowel and bladder. Because of the ostomy and so many resections, they have never dealt with someone like me and don't know what to think. I should not be left alone, but he "unwinds" on the golf course. Wish I could still do that! Sorry to whine here when so many people have no one to be there at all. Just feeling a little alone this evening I guess.
Hope things get better for you.

 

[Peace_and_Charm]

I can only try to feel your pain. I too feel lonely almost every night, and I can't imagine how difficult it has been for you with the ileostomy.

I don't think it is possible for healthy people to have the same compassion that ill people have.

I can only say that when my condition was most severe, only the best doctors were able to effectively treat me - they simply see more of severe, less common manifestations of the disease. I hope you have the best medical care possible.

I will say a prayer for you tonight - I think the more we suffer, the greater the reward will be one day.

 

[tinah]

Thank you for your kind words. You are right, people just can't grasp what we go through, and I understand that. I also know it is difficult for the people who live with us. I have mostly been on this side of things, but it has given me the ability to have compassion and understanding of others who are suffering or dealing with health issues. Thanks for your prayer.

 

[Praying247]

Thanks tinah and Peace and Charm, It has been tough. I have scopes for August 22nd. Prep won't be fun, but at least it's before school starts. Things have gone up and down, I got a new job since I couldn't handle my 8+ hour shifts at my old job, and this new one is at hollister So it made my self confidence fly through the roof. Thinking that I was not pretty, when really I guess I was, I mean if hollister hired me I wasn't not pretty. This week is hard, I have really bad flares everyday and a terrible cold to go with it... Family has been more supportive and understanding than before though, friends are the ones who really help me though, along with my boyfriend, and this community of people who know EXACTLY what this is like.