I Need Some Help. Do I have Crohn's Disease?

[Hayda24]

Hi, I am sorry that I'm posting on this forum because I have not been properly diagnosed yet with Crohn's nor do I even know if I have it, I was just thinking this would be the best place to come to ask if you guys think I have it. So I am a 14 year old boy and have had some health problems for about the past year or so. Unrelated to the abdominal troubles I'm having, last year I had to have chest surgery to pix a deformity in my chest wall due to pain I was having. I had the surgery which actually made the pain worse and was sent to millions of doctors and put on many different kinds of medications for pain. Some include Tramadol, Amitriptyline, Drisdol, and Baclofen. So even with all these pain medications for my chest pain, nothing worked and I got tired of going to doctors all the time so I just gave it a break and was going to wait to see if the pain subsided at all. During all this chest pain and doctor visits for the chest pain, I also noticed some joint pain, thinking it was somehow related to my chest or surgery for my chest. The joint pain seems to mainly attack my knees, elbows, and wrist/hand joints. This was also pretty bad and I kind of just let it be due to thinking it was related to my chest pain as well. My doctor listened to my joint pain symptoms, and did a Rhematoid Arthritis blood test because my mom has Rhematoid Arthritis which is an autoimmune disease. The blood test came back negative(normal) so I just kind of let it be. But in the past 2-3 months new symptoms appeared. The first was the joint pain getting worse and the second was changes in vision. I always have had 20/20 vision until the past 2-3 months. I have noticed it is becoming continually more difficult to read the board in class due to it being so blurry. The burry vision does come in bouts and kind of is on and off but it is always hard to see long distances. Sometimes it gets so bad that I can't read something right in front of me clearly, but then it will go away and get better then only to reappear 15 minutes later. So for this I went to the eye doctor, had a vision test and he told me I could get some prescription glasses but I would only have to wear them when I needed them. I figured I should just wait until my eyes get bad enough to the point where I need them all the time so we don't have to buy a pair of glasses only to buy a new pair in a few months. Next came some abdominal troubles. At first, I had a lot of bloating and a very severe amounts of gas. Then, the abdominal pain and cramps would kick in. Weirdly enough, the abdominal symptoms wouldn't start until about 1-2 PM in the afternoon and when they first started, they weren't bad at all so I just ignored it. Then, came the bleeding when going to the bathroom. Due to all the pain pills I was on, I was severely constipated and bled every time I went to the bathroom. It started off with not that much and I only bled when it was really hard to pass a stool, but then it turned into me bleeding severely even if it was easy to pass a stool. The blood was never in my stool but just there when I wiped. So it was just rectal bleeding. Slowly but surely the pain got worse. The most of my pain was in my lower left abdomen and was a sharp, stabby and aching pain. This started at around 1-2 PM and would continue for the rest of the night. Due to all the symptoms, I went to see my doctor. She did blood work and all returned normal. A week after I saw her, the pain got extremely severe and we called her. I was incredibly bloated, my abdomen was distended a lot, the pain was stabby and achy in my lower left abdomen and I could not pass gas nor pass a stool. She did an X-Ray and she saw a vulvulis(twisted colon)/partial bowl obstruction. She told me I had to go to the ER. So I did and they did another X-Ray and whatever was there, had moved or become unblocked. After this incident, anything I eat makes me miserable. I become severely bloated, abdomen gets distended, I feel like I am going to throw up, I get severe cramps in my lower abdomen and near my belly button. Also, it always feels like I need to pass a stool but I can't/don't need to. In the past 2-3 months, I have also lost nearly 20 pounds which was not intended. Due to all of the abdomen cramps/bloating/gas I have absolutely no apetite. All the symptoms are now getting so bad that I loose a few pounds a week. I used to crave chocolate and coffee all the time, but all of the sudden, the thought of eating it makes me want to throw up. I read that foods like this is not good for you when you have Crohn's, so it's like my body was telling me not to eat it. Anyway, I got the severe abdominal pain and bloating and distension two days ago which was even more severe than the night I went too the ER the first time. I was about to go to the ER but then realized I had a GI appointment the next day, so I figured I could wait even though I was miserable. He listened to me and he is thinking Crohn's as well. We set up a Colonoscopy and Upper Endoscopy but because I am very tall and have some characteristics of Marfans(connective tissue disorder) he did not want to do those tests due to the chance of perferating my intestines and making me need surgery. The risk for that went up due to possible Marfans. So next week I am going to have a CT of my abdomen with contrast. I am hoping it will reveal something, but whenever the doctors thought I had something and did a test, it came back normal when I was having all those problems with my chest. I am wishing for Crohn's because I can't keep having problems like this and I want an answer. Oh and also, about my symptoms, they now are all day(not starting at 1-2PM like before) and are very off an on. I will have some points where it is miserable and then will be fine but I always seem to be bloated and have gas. Also, my abdomen makes so many weird noises. It is always this loud croaking, screeching sound. Sometimes it even sounds like a little girl screaming! Anyways, I am sorry this is so long, but I just want some advise from people who have this problem. So, do you guys think I have Crohn's? Any comments will be greatly appreciated. Thanks so much!

 

[Clash]

Welcome Hayda24, so sorry to hear of all you have gone through! I think you are definitely headed in the right direction with going to a GI. Even if he feels wary of doing the colonoscopy and upper endoscopy the CT with contrast is a good test as well as an MRE, SBFT, and pill cam if you don't get answers with the CT scan. I hope you are able to find answers soon and can find a treatment to help you feel much better.

 

[Karen]

 

[Hope345]

Welcome to the forum. This is a great place for you to be, to find support and look for lots of information that may be able to help you.

Yes, you have something going on that resembles Crohns.
Often arthritis and Crohns can be tied together.

it is good you are continuing to have tests done. Have they ran any stool cultures yet?

If you havent yet, it would be good to start a low residue diet. The SCD might be a good one to look at right now.

I hope they get you on the right meds soon and give you a diagnosis.
sending lots of hugs. You are so young, do you have lots of people helping you?
My daughter is 14 too. If there are any questions I can help you with, I will try to help.

 

[araceli]

Hi and welcome to the forum. I am sorry you are going thru this at such young age. I have a daughter who has crohns 16, a son who is 14 with joint pain. We are getting close to a dx. But I had to take him to a rheumy. His RA came negative, sed rate neg, crp neg. But mri shows some wear and tear on his sacral joints. You may want to read about juvenile onset ankylosing spondalitis. There something with the name of enterophatic arthiris, that is what my son may have. I really hope you find answers soon and feel better.

 

[Hayda24]

Wow! You guys are all so nice and thanks so much for all the responses! My doctors just called and said they did not feel comfortable doing the colonoscopy because of the possibilty of my intestines rupturing or perferating during the procedure. So we set up the CT for next Friday the 22nd. They are going to have me swallow Barium and also will give me a dye injection on top of that to see my colon better. I did have a question though for all of you. When they do the CT and get the results, is there any possibilty of them diagnosing me with Crohn's Disease from the CT? Or would they have to do a colonoscopy to confirm the diagnosis? Thanks so much and I will let you all know what the results of the CT scan is. Thanks!

 

[Hope345]

That is a good question.
I do know there is a good chance the CT will show inflammation if you are in a big flare and strictures.

It sure seems they are not apt to make a final diagnosis without a biopsy. But with all the tests they are doing, they can rule out some other issues, and they could give you an idea of what is going on.

There are so many tests done with IBD/GI issues to find an accurate diagnosis and keep track of flares. sometimes when you are not in a big flare, the tests can not be conclusive to your actual diagnosis.

Some tests just rule out certain problems, some show specifics, and then the GI puts it all together and makes his/her best guess.

There is a pretty large amount of people who remain in the undiagnosed area. Dont get discouraged. Just take it one day at a time and hopefully they will get you on the right track to help you feel better soon.

Keep talking with us and letting us know how you are doing.

 

[Hayda24]

Thanks so much for the response. I am hoping that I can get diagnosed fast if even at all because I have heard some stories where it takes a very long time for people to get diagnosed. I will let you all know what they say next Friday. Thanks so much again!

 

[Lissa73]

HI Hayda24 and welcome! So very sorry for all the pain that has got you here. I just had a colonoscopy March 1st and was diagnosed with Crohn's on the 6th. Yesterday I did the small bowel series (swallowing the liquid barium) I just wanted to give you some advice on that to make it go quicker. Drink it in large swallows! Don't sip it .They said it will just trickle through your system if you sip it. It isn't that it tastes bad, it is very thick...like paint. And walk! Lots of walking to help it move thru your system. It was a little over 4 -10 oz. or so cups. I was in and out in about 45 minutes. They say it can talk up to 4 hours. Good luck and I hope you get some answers for your pain .

 

[Hayda24]

Thanks for the advice! If you don't mind me asking, what were some of your symptoms that led you to getting tests to see if you had Crohn's? Thanks!

 

[Lissa73]

I don't think I'm like anyone here, I don't really have some of the typical symptoms, I thought I had IBS maybe, but I turned 40 in January and because my Mom was diagnosed with colon cancer at age 46 and passed away at 48 my doctor recommended I get checked to make sure I didn't have colon cancer. It was a great shock when the doctor said he found 3 lesions (and biopsied them) and said he feels I have Crohn's disease based on where they were found. Sure enough after the results came in , here I am. I have my next appointment with the doctors assistant on April 5th so I won't know anymore until then. Apparently GI doctors are in high demand around here and I guess I'm not sever enough to warrant a quicker appointment.

 

[xmdmom]

Sorry you've been having so many health issues. I think it would be good to determine if you have Marfans or atypical Marfans. I did read that some variants can be associated with GI symptoms. A geneticist is usually the specialist that sorts these things out. It would be very unusual for you two have two unrelated unusual diseases. Did you ask your doctor 1)if your current gi problems could in some way be related to the volvulus? 2)if volvulus is more common in Marfans or crohn's? Was a sed rate or crp done? These are often elevated in Crohn's.

Best wishes and I hope you will have more clarity soon and feel better too!

 

[itsme2]

xxx

 

[Hayda24]

Okay, I had my CT scan last Friday with the Barium and contrast material. We didn't hear anything from the doctors until today on what they saw but they finally called this afternoon. What they saw was that my superior mesenteric artery is narrowed. This is the artery that supplies the pancreas, small intestine, and the right side of the colon. Also, they said that my spleen is possibly enlarged but it also could not be enlarged. They are going to call my GI doctor tomorrow and see what he thinks. The doctor is thinking they will probably want to do an upper GI endoscopy to see the artery better. Because my doctor didn't really give us much information on the artery thing, I decided to research it which was probably a bad idea. I read that this is very rare and also very lethal and life threatening. The death rate is about 1 in 3. Normally the treatment is a complete reconstruction of the artery in surgery. Weirdly enough, this artery problem is related to Crohn's Disease somehow. So I'm hoping that the GI doctor has an idea of what to do for this and I am really hoping I don't need surgery. I will let you all know what my GI doctor says when I know.

 

[Hayda24]

Okay my doctor called this morning. They got me into an emergency upper GI where they make me swallow a lot of Barium and use a flouroscope to watch the Barium travel through my digestive system. This will give them a better look at that artery that is narrowed and they will be able to see how things move through my digestive system. The reason they wanted to have this done so quickly is because there is a high chance that I am severly malnourished. If they see the artery is very narrowed and I am malnourished, they are going to have to admit me into Children's Hospital and give me aggressive nutrition therapy with a tube down my throat into my stomach to deliver the nurtients. About an hour ago after the flouroscope they made me drink more Barium and am having X-Rays every 20 minutes to look at the Barium traveling towards my colon. It has been about an hour and a half of me walking around trying to get the Barium to reach my colon so they can see what they need to see and I can go home. I have been at the medical center for about two hours now. They just said they are going to wait 40 minutes now to give it more time to travel to my colon. I am hoping the next X-Ray will show that it has reached my colon. Later today my GI doctor will be able to see all of these tests, look at the artery and come up with a plan on what to do. This could either include the me being admitted to the hospital and having the nutrition tube down my throat, or just meeting with my GI doctor tomorrow and coming up with a plan on what to do for my artery. That would probably include a nutrition plan or if my artery is severely narrowed there is a chance I will need to meet with a Vascular Surgeon to determine the next step. I will let you all know what is going to happen when they tell me.

 

[jwfoise]

Good luck Hayda24

 

[Josephine]

Good luck Hayda, speed recover for afterward and welcome to forum.

 

[itsme2]

xxx

 

[nindancer]

Hi Hayda24, I feel for you big time. I'm in my 40's and am struggling to cope (I only just joined this forum) and I can't imagine what you're going through. I really hope you get a decent diagnosis and treatment too, I think the not knowing makes things so much worse, it's on your mind 24-7 and that's not good. Take care :ghug:

 

[Hayda24]

The doctors called this morning and gave me the worst results possible. The Upper GI came back completely normal. They can't do anything at all for me because they don't see anything wrong. This is 10X worse than them saying I need surgery or need to be admitted to the hospital because I feel crazy and helpless knowing there is nothing wrong. I am also very angry at my doctors because they told me that I had ths artery thing when I really didn't. I don't understand how they could diagnose me from the CT but then say I don't have it from the Upper GI. Also, I am angry because they made me spend my whole day at the doctors walking around, waiting and drinking that nasty liquid. My GI doctor says he still wants to see me next week to figure out the next steps. Whether that is coming up with a nutrition plan or doing a colonoscopy or endoscopy. Whatever his plan is, I don't care. I am done with seeing doctors, having them lead me to believe I have something and then not having it at all. When my doctors call later today to set up an appointment I am going to tell them I am done, I am not going to see them anymore and I am not having anymore tests. I feel comfortable with this desicion because I am not dying and I guess I can deal with the pain. The only thing I am a little worried about is my weight problem and the fact that I hope I don't loose too much weight. I think if they thought I was really malnourished they will admit me to a hospital but I don't think they will. Thank you everyone for all of your thoughts and prayers because it really helped me get through all of this. If anything else does end up happening I will let you all know. Thanks so much everyone and good luck with your guys' Crohn's!

 

[Josephine]

Please stick with Gi doctor and having more tests done.

 

[Clash]

Hayda24, it is not uncommon for the test you took to come back normal and still have CD. My son had the same test and it didn't show any issues digestive tract wise(I can't speak to it's accuracy in relation to the artery issue) he then had an MRI that showed thickening in the TI of the small bowel and a colonoscopy that was able to biopsy just inside the TI that was consistent with CD.

I wouldn't stop pushing to get answers to your pain. Whether it is related to CD or otherwise it is something you'll definitely want to get to the source of. I can completely understand your frustration and anger with the medical staff in relation to a dx that they are now saying is false. I'm so sorry you find yourself in this position but if you continue to have issues I would continue to push for answers. It takes some people many tests and such to get a CD dx, I hope this isn't the case for you and I do hope your health improves.