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The dr called this morning and told me I have Crohns disease. He didn't tell me where it's located or any details yet, but he said he wants me to go to the hospital to get treatment this week but may try to get into mayo clinic or shands sooner because they are the experts. I'm really kinda freaking out though, was not expecting this at all because of all the normal test results I've had in the past. Started crying as soon as I got the news. :( dont really know what to expect with this disease and with the treatment plans. And just still can't believe that I have this disease and will for the rest of my life. Thankful that I have answers but upset. You all probably understand... :( just need some hugs today. I wouldn't know what to do if I didnt have this forum, you all are amazing.

Btw, so upset at all my 4 doctors before this GI because they all insisted that it was IBS, when really it was much more. Also when I go to mayo clinic, going to check for endometriosis just in case as well because that time of the month for me is really bad usually. The mayo clinic will take care of me. Still in shock, can't believe one journey ended, and this journey has just only begun. Working on getting an earlier appointment for mayo.
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Super Moderator
Sunshine! I'm so thankful that you have some answers and can get some relief, finally! Congratulations and condolences. And lots of hugs! I'm sure it is scary, one journey is ending and a new one is just beginning. We're all here to help you through it. Many hugs and I hope that whatever treatment they put you on, that it works miracles for you and that you can get into remission and be pain-free for a good long time.

Crohn's Mom

Hi Sunshine :)

First off sweetie....take a deep breath ! It's all going to be ok!
I know you're scared and that is perfectly normal. Even though you knew something was wrong, and even thought it was Crohn's, it is still hard to process once you get the actual diagnosis. You're amongst friends here and we will be here for you :)
It's great that the pill cam finally gave you an answer; now you can begin proper treatment and begin the road to remission !
In my opinion, since you already have an appointment for November with the Mayo clinic, you should at least call them first and tell them about your diagnosis and what your current doctor wants to do (re: treatment in hospital) and ask them if there is any chance you can get there sooner and start with them instead of having to switch.
Do you know which Dr. you are seeing there yet ?
They are really swamped most of the time, but that doesn't mean that can't squeeze you in. They often have cancellations so at least tell them to put you on the list to call if they have an opening sooner, even if it's last minute.

I just found this wonderful article that explains Crohn's in "people terms" and is quite easy to understand and gives a ton of information on ALL aspects of this disease. It was written by someone at Johns Hopkins.
Check it out and read through it and maybe it will calm you some :)

If there is anything I can do to help you please don't hesitate to ask.
Hang in there and try not to work yourself up with worry ~ It is always better to know what is wrong than to live in limbo with pain and illness not knowing and feeling like no one believes you. You can get better now, it will just take a little more time :)

big hugs and best of luck!


Wow Sunshine! I'm glad you finally can get treatment. The undiagnosed part is the hardest part. Now you can start to feel better and get on the path back to a normal, or close to normal life. I'm so glad you are going to the Mayo clinic! You are right, they will take care of you.
I send my warmest thoughts and prayers to you. Can only begin to imagine how you're feeling. Although expected it must still be a shock, at least now you know that the correct treatment is soon on it's way and hopefully it will get you some relief quickly. It's going to mean a lot of changes in your life but you've already had to do a great deal of that whilst being undiagnosed. You've managed to come through that so you know you're already well placed to take on whatever this has to throw at you. I really hope you get some sense of normality quickly and know that we're all thinking of you.
I am guessing you must be so confused right now. Glad you have a dx but upset that it is Crohn's. We are all here for you! :soledance:

I really think the hardest part is over now, treatment and relief ahead, fingers crossed.
Well that is bittersweet to hear, I'm sure. Sounds like one way or another you are going to get proper treatment and hopefully relief. was it your pillcam or the biopsies they took when they put the pill in your stomach? I am just curious if you know.
You're on your way!

Hi Sunshine :hug:

I can only imagine how scared and unsure you must feel right now, but like everyone else was saying, we are all here for you and you will get thru this. It sounds cliche, but God will not give you more than you can bare, and it may not seem like it, but this is a blessing because now you can begin your road to remission. Don't forget us in the undiagnosed club- we love you and you will always be an honorary member.

Lots of hugs :ghug:

Mayflower, thank you, it is bittersweet. It was the pill cam that showed all the problem areas.

Shan, thank you, I am trusting God to help me through this. You are right, he wouldn't give me more than I can handle. And I will never forget you all in the undiagnosed club, I will still write on the forum and see how you all are doing and keep in touch. :)
Just wanted to let you all know, I got more info on where my Crohn's is located and everything...

I have Moderate to Severe Crohn's Disease with very deep ulcerations all through out my small intestine... and the part that is affected with Crohn's is my ENTIRE small intestine... thank goodness we found it FINALLY. Going to Mayo clinic on Monday to start treatment!
Every test was normal. The blood CRP level was elevated which made my doctor want to do pill cam. And the pill can showed it with no doubts... It was clearly Crohns Disease. Finally someone found what was causing my problems, but wish it wasn't so bad.
Wow, yeah that's crazy. Everyone kept saying IBS with me bevause they couldnt find anyhing. Is that how it was with you?? How long did it takw to find your disgnosis?? I think so highly of the pill cam now!
Never had ibs diagnosis as my symptoms then were abdo pain, weight loss and vomiting. They thought it was acalculous cholecystitis so had my gallbladder out. Then started with big bleeds of altered blood and pillcam showed multiple nodules. It got delayed in that part of the small bowel so much of my small bowel wasn't seen. They didn't even see the area that was bleeding so said I had other affected segments.

Took 18 months of every test under the sun to find it!
Aw poor thing... Yeah I had IBS like symptoms but then all of a sudden had vomiting and joint pain and stabbing abdominal pains and dr saw me in that flare and ordered blood tests. I know it's hard to diagnose stomach problems but it stinks for us when they can't find it. Glad they found it for us. I have my gall bladder taken out too!! They thought that was the problem first too. I've been having problems for about 8 years, but prob only did tests for 2.
You will feel so great that you are being treated by the best! Please let us know how you are doing and what they are doing for you!

You are on the road to recovery and being able to do something positive for your body!
Thank you. It's been so rough this morning. 2 hour car ride with stopping at every other exit to go to the bathroom :( I feel awful today.
Hey everyone!
Went to the mayo clinic today, they were so nice to me. It was such a rough morning though, with the 2 and a half hour car ride there, and my D acting up really bad. I had to pull over and stop to go to the bathroom about every 20 minutes. It was terrible... but got there and checked in. Talked to my dr. and he said he agrees with my GI here in orlando that it is Crohn's diseae, but he wants to do a double balloon endoscopy and get some biopsies of the affected areas and see exactly where my most troubled areas are for the best treatment. I am home now, he said I will go back in a week or so to do the DBE. Once he has those results he will aggressively start with treatment. He said he's going to go over a bunch of treatment options for me for like an hour with me once he gets biopsy results back. He said he wants to use the biological treatments like Remicade or Humira (etc.) because I'm so young and he wants to tackle it the best way possible. He seems concerned that I have been undiagnosed for so long, which is another reason why he wants to do the DBE to make sure I don't have anything else weird going on. Apparently my GI in orlando only chose 8 pictures from the pill cam to show me and then tossed the disk with the thousands of photos, soooo my mayo doctor might have to do the DBE going through both ends because he doesn't have a video of the pill cam to see where my trouble areas are... Also had blood work while I was there and had to do stool samples as well.
He's taking good care of me so far!


That sounds great Sunshine! He sounds like he is going to make sure everything is thoroughly checked. I'm sorry you have to wait another couple weeks for treatment!
I am so thrilled for you! It really takes a lot of burden off when you know you hav e a doctor who is wonderful and knows what they are doing!

I can't believe the doctor in Orlando threw away photos. Are you sure. I work in healthcare and we don't throw away anything. We can't...all medical records have to be maintained in our hospitals for several years and then go to a storage facility.

You may want to investigate that a bit more by calling the doctor's support staff, the medical records department or radiology department.

It sure would be nice to avoid one more test but on the other hand, perhaps the testing at Mayo will be even more specific.

Best of luck...help is on the way!
Thanks you guys!
Yeah even if he had the pill cam disk he still wants to do the DBE to take biopsies. But, yeah it's weird. My mom and I called my GI office in Orlando and they said the disk is not in their hands... My mom and I are very confused by this. My mom is a paralegal and she thinks it's odd that "they don't have it". I'm going to call again or my dr at the mayo clinic may call.

Anyway, can't wait to have him do the DBE and tell me more info about my crohns. And then hear all my options and get me started on treatment!
SunshineSmile! I am so glad that you are getting treatment. I have to say I was really shocked when you said you had been diagnosed because many people end up with negative results. I want to tell you that we are all here for you. You seem like a such a positive wonderful person that looks at the glass half full and I wish you the best in your healing.
Best of luck with the DBE sunshine, here's hoping it shows the exact source and severity of your condition. It must all still be a bit daunting for you but at least if things get even tougher you can take solace in the fact that it's all for the greater good now. Help is on the way and you will get some relief. I really wish you the best of luck and hope that things improve quickly for you and that you get treated with some compassion and care.

Crohn's Mom

I'm glad everything went well for you Sunshine, but I'm wondering did they give you something (medication) to help you be more comfortable for the next couple of weeks ? Is there anything they can do for you before the DBE ? Or do you just have to wait ?
glad you're on the right road. sorry that you have to wait a week to go back and then for biopsies. waiting is the hardest part in all this, isn't it?


Super Moderator
Sunshine, I hope you can get that DBE quickly so that you can get started on some treatment already! It seems like they're still making you suffer and wait even though you have a diagnosis now. I concur with what Tracy said - didn't/couldn't they give you anything just to hold you over until you start long-term treatment? A short burst of pred maybe?
Ughhhh :( I'm getting worse! Everything I eat comes straight out. Liquid D all the time now. I hope he can do the DBE soon! I feel so sick and run down.
My mayo clinic doctor said he couldn't because he wants to see exactly what's going on before he starts all the big meds. Gosh, so close to treatment, and then BAM they just pull your hope away. I'm just nervous that I'm getting worse. He ordered a stool test to do, and I did it, but they aren't exactly going to get formed stool, so if they think that's what they are getting they better re think it! All that's happening is just liquid, it's like my intestines aren't even trying to work, gosh, they are lazy! lol... Gotta find some humor in this, or else I would go crazy!

Tomorrow, I am going to my old GI doctor (the one who told me I was crazy and that it's all in my head) to get all my records from him, because we told him to send my records to the mayo clinic AND THEY DIDN'T! So all they had was what I brought them. So, I hope they are nice and don't get rude with me, because really I think I've been through enough, just give me my records. :( And I'm going to my current GI in orlando and ask where the pill cam disk is, because my mayo clinic doctor needs those... and the GI doctor in orlando keeps saying that they don't have them, and I would like to know 1. WHY would you throw them away, and 2. WHERE are they!? So wish me luck with all that tomorrow!
Of course after all this stressfulness, I'm going to Joann's fabric store and picking out a craft to cheer me up! :)
Hopefully they won't give any grief about any of that, as far as getting your stuff. It is YOUR stuff, after all. Sorry you're feeling bad right now. I hope they can get your test done quickly and decide how to treat you sooner than later.


Super Moderator
Sunshine, unfortunately that's not uncommon - I wasn't allowed to take anything but Zofran before my pill cam so that they could see what was going on in there without meds masking or healing anything that was going on in my gut (of course in my case there wasn't anything to see on pill cam anyway). I hope they can get you in for the DBE quickly so that you can get some treatment SOON! In the meantime, try to take it as easy as you can, and get some good crafts going. :) Hang in there, not much longer to go now until the DBE and treatment, and we're all here for you. Do you have a date scheduled yet for the DBE?

On a personal note, if I were you, I'd ask for pred the second I woke up from that DBE. I'd also give a piece of my mind to that doctor who said you're crazy.
Went to my GI in orlando about the pill cam disk, and they said that they literally threw it away... all they have is 8 pictures out of 50,000!!! I asked why, and they said to save money and storage space.... Can't believe it. Oh well, can't do anything about it now. And I got all my records from the doctor who thinks i'm crazy lol. I didn't see him, but if I did I would of said something... I was reading through the records and he has notes that he wrote and it's unbelievable the things he said about me. Ridiculous... But I have bigger things to worry about, like staying hydrated, so I'm not trying to get upset about everything else. that's past history, this is now. And the now, is that I will be getting the best care that I can possibly get from the mayo clinic, just gotta try to hang in there for now.

I got a craft to do It's like an embroidery kit, with needling. It says it is easy for beginners, and since I've never done this before, I thought I could handle it. It looks soo pretty! So, I can't wait to see how it turns out.
I think you should put in a complaint about that! I am not so familiar with US health laws but I would have thought that was in breach of several! I can appreciate you have alot to deal with, but I think complaining in this case is important.
I would google Medical Records Retention in FL and see what you come up with, every state has different rules for how long records should be kept, I found this online at an xray film recycling source:

Florida state law for x-ray film and other medical records retention period.
Under Florida law, health care providers must keep medical records
for a minimum period of time.

Doctors in Florida must keep x ray film and medical records for at least 5 years after their last contact with the patient. Public hospitals in Florida must keep their medical records and x ray films at least 7 years after the patient has been discharged.


Please note that the federal law requires a retention period of 5-7 years for adults and up to 19 years old for minors.

Disclaimer: The information for retaining periods of x-ray films in FL, brought as courtesy for our silver recovery customers. the information was collected from department of health website and other online resources, however, B.W. recycling, Inc is not responsible for the accuracy of the information on this page and might not be up to date.

(I work in healthcare, radiology specifically, and I don't think that was correct of the office to dispose of your images, I would pursue that further if I were you)
Hi Sunshine, I know that right now you need to focus on your health but when you feel you are able, you should write a letter or an email to the head of GI at your old doctor's hospital and to the CEO. You need to tell them how his care made you feel, your outcome at Mayo and that your camera pill was thrown out. This is the way you can effect change for others.

Again, I have been an American physical therapist for 22 years and that is absolutely illegal to do! We cannot dispose of any medical records or films. More importantly, it effects the quality of care that your former doctor and others can deliver.

If there is a repeat test done because of this, it may be worth letting your insurance company know this happened. They have their own lawyers and can decide if they want to pursue something with the former hospital. Then it won't be your hassle.

Either way, you are on the road to answers and recovery and that is what is most important. I totally understand not wanted to focus on such negativity right now!
Hey everyone, thanks for all the thoughts about the pill cam issue! I really appreciate all of you helping me out with it. My mom is actually a paralegal for a lawyer, and she said that it's malpractice to throw away a patient's test results, it's only been 2 weeks since I had the pill cam, so it's not even like it was 5 years later or something... crazy doctor! Couldn't believe it, still can't! But yeah, we are going to file a complaint and such after next week.

On Monday I have my Double balloon endoscopy scheduled!! I have to do a prep though kinda like the colonoscopy prep actually.... ughh :( preps NEVER do well with me! We are driving up on Sunday morning, and then i'll do the prep sunday evening and then do the test on monday morning, and then he said he wants to meet with me on tuesday morning. So, hopefully be getting treatment plans next week!!!


Wow your DBE is really soon! I wish you the best of luck!!

That whole pill cam thing is insane. If my doctor did that (which I have a hunch he did) I would be so upset. That took a lot of money and technology, why throw it away?
Yeah I totally agree, can't believe he did that. But yeah prep is on Sunday. They are doing the lower double balloon enteroscopy Monday which is why I'm doing a prep. And they said that if he feels it's necessary to take a look at the upper part of my small intestine then they will schedule it another day. But we will know that on Tuesday or Wednesday. I'll keep you guys posted on what's going on. And hopefully get started on treatment too!
Thanks everyone for keeping me in your thoughts. I had the LOWER Double Balloon Enteroscopy yesterday. He took biopsies everywhere. I met up with my doctor today at the mayo and he said that he couldn't find any abnormalities with the lower part of my small intestine and he again asked for the pill cam video and pictures. And I told him the doctors office threw them away and now they are non existent. He is really upset and sees the pain I'm in. He said he needs to do another pill cam but then he realized that they had to push the pill down by doing an endoscopy he just decided that I'm going to get an UPPER double balloon enteroscopy now. He even got me squeezed in for tomorrow morning at 7:30. He's on top of things and just needs more information on where my problems are. He's confused because my doctors in Orlando in the notes they took they said they saw inflammation and deep ulcerations and that I have Crohns. So he has to find where it is and he's thinking he will find the answers tomorrow when they do the Upper enteroscopy. He said if he sees all the ulcers and evidence of crohns he is going to "be aggressive" in his words. I'll be seeing him tomorrow a couple hours after the procedure to talk about what to do next and what they saw. I haven't ate in 3 days because of all the tests and pain. I'm suffering so much and if we had the pill cam evidence I wouldn't be going through all this... My mom is going to talk to her attorney that she works for about if we can do Nything about the office throwing away my results.

I haven't slept in days, the only time I sleep is when they put me under anesthesia... I spend everyday in pain and having D and throwing up. :'( I just want to feel better. I have faith though that tomorrow he will find the proof and start being aggressive and treating this. Thanks for all your support!! I'll keep you guys updated. You guys are amazing! I'll stay strong!!


The Prettiest Princess
I really hope you have some recourse with the other doctor. I'm just amazed they would throw away the pictures as if it's no big thing.

Good luck with the upper tomorrow! that's what I thought you were having today. :ghug:

Crohn's Mom

Great to hear from you Sunshine! I know it's a hard road you have gone down, but just think...you're almost there ! You're in good hands now and will get some relief very soon :)
That's just ridiculous about your pill cam results...I can not believe they would do that !
Try and get some rest and stay strong, we're all here for you!


Super Moderator
Sunshine, I hope you're finally able to start some treatment (not to mention get some sleep and some food in you!) after tomorrow's upper DBE. I didn't even realize that there were two different types of DBE, I didn't know there was a lower version of it. Best of luck with it tomorrow (you don't have to do prep again, do you?) and I really hope you're able to feel better after all of this is said and done! You've been through so much lately, it really sucks that you have to go through even more. Hang in there, you need to get better so that you can work on your crafts. :)


Oh goodness! Another procedure! I hope this is the last one for awhile and it shows whats wrong! o_O Are they not even putting you on pain killers to keep you comfortable?!?!
Wowza, glad they are getting you in fast for the upper DBE. That is absolutely insane abt the pillcam images being trashed. That is so horrible. Hopefully all will be resolved soon, first and foremost being your health!! Best wishes for tomorrow!
Thank you everyone sooooo much! Can't wait to be at the hospital at 6:15 so I can start the IV and get nausea medicine. Then do the procedure and know what's going on. Thank you so much for being supportive, it really helps me.
I thought of you today when I was at the hospital with my son. We were dropping off a bone age x-ray for them to load in their system for a doctor to read. A big sign next to the office said, "We will keep your discs for 3 months and will then destroy them unless you request we return them to you. If you need records of your testing, the institution where they were taken are obligated to keep them in their facility or in storage for as long as you will need them" Not exact but basically said they will always be available from your original institution!

You are close to help!!! So glad you are in the right place now! I am also glad your mom can help you with the legal issues. If nothing else, this needs to be done so no one else ever goes through this!
Sooo... Went to my UPPER double balloon enteroscopy this morning, and then went and saw my doctor at 12:30. He said they went 3 feet from my esophagus into my small intestine and couldn't find any abnormalities or inflammation... and Monday's biopsies all came back normal. They took biopsies today but he's pretty sure they will be normal... He is concerned because again the doctor's office that did my pill cam said I had deep ulcerations and inflammation in my small intestine, but of course didn't tell us in detail WHERE it all was... So now he's starting to not trust what any doctors did with me, and he sees me losing weight and not doing well, and he's upset. He keeps telling me he wants to help me so bad but he has to figure out what is going on first. He said that since there's about 20 feet of small intestine, and they only checked 3 feet from both end, there's still have 14 feet or so left in between all of that, and he thinks that that is the last place to check, and that's where it could be hiding. THEN, he gave me the wonderful news (NOT...) that he needs me to do the PILL CAM AGAIN!!! :( :( :( :( jafo;iewfiafjdslkjfaljf :( all because the other doctor messed up everything! But he knows that my reflux is bad so he is going to do the upper endoscopy again to push the pill to my stomach when we do it... Sooo anyway, I am now home in Orlando, and he said he wants to let my intestines relax from all the poking and such and we will do the pill cam in 2 or 3 weeks... and he said he still can't give me anything for any of my pain or D, but he did say if I get really sick to call him immediately. Also, he gave me another stool test. I have to go on a FAT DIET, which is when I eat nothing but fatty foods, and collect all of my D. So he can see if there is a problem with my small intestine digesting and absorbing fats (which sounds like a logical test to do). I love this doctor he's so sincere and really caring. I don't know how long all these tests are gonna keep going on, but I KNOW he will find the answers eventually. I feel like I was SOO close to the finish line, and now I'm back at square one! :( If the pill cam comes back normal whenever I do it, I am going to freak. My mom asked him if it comes back normal, what do you think it is, and he said I don't know, but we will get down to the bottom of this. The mayo clinic is the best, and everyone is so kind, if anyone gets the chance of going, I highly recommend it. I just wish I could get treatment sooner. :( Stupid orlando doctor with pill cam results that are non existent ...UGH. :(

I've been through so much the past 4 days, and I feel like it all just back fired on me... When am I going to get some relief and good news!? Just gotta keep praying...


Super Moderator
Oh Sunshine, this is so discouraging, I'm sure you must be upset. The fat diet sounds kind of awful too! I don't think I could keep down fatty foods if I was flaring as badly as you are. Do you ever see what looks like orange-ish oil floating on the top of the toilet water? I have experienced that and apparently it's undigested fat. If you've had anything like that, I would wager that the fat test will show that you're not digesting fats very well.

It seems really ridiculous that the doctor can't even give you some painkillers to get you through the next few weeks. You poor thing! You've been through so much and you've still got a ways to go. :( Hopefully this is the home stretch though and the pill cam will sort things out once and for all! I really, really hope so (and I hope the pill cam results get back to you very quickly after it's done!) so that you can start treatment ASAP. Hang in there, try to rest and relax as much as you can in the meantime. Thinking of you and sending lots of hugs your way!
Wow, that is horrible! And this is really all the fault of that doctor who lost the pill cam results! He is getting a lot of strikes against him, eh? But I know you are trying not to stress, so let me shut up. I hope you can get something that helps you out soon. I am so glad the docs at Mayo are really sincere in their efforts to help you. Sucks that they are kind of long distance.

You poor thing...
yeah... the fat diet is not exactly going to go over well with my tummy :( Whenever I eat fatty foods, I get really sick and have D almost instantly. So... he will see that in the collection of D. I have had that orange ish stuff floating in the water before, and nothing is getting digested very well... :( ugh... I understand why he can't give me painkillers or anything because he doesn't know really what he's dealing with in my body. He actually said that he was so glad that I didn't start taking what my other doctor had prescribed for me, because that might of messed up some of the results of the tests were doing. So I'm glad I didn't take those pills, plus he said that they were the most mild of any Crohn's medicine, and he wants to treat it aggressively if he can FIND EVIDENCE! goodnessssss... I want answers...... :( I'm so exhausted emotionally.

Oh, and that orlando pill cam doctor has so many strikes against him... He's caused me so much pain and suffering through all this... If my mom and I can do something about that, then we will definitely pursue the options, so that no one else has to go through what I have been through with non existent pill cam results. Especially since now I have to REPEAT the pill cam. ridiculous.
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The Prettiest Princess
oh Sunshine, I really hope you can take some kind of legal action against that former doctor. He's a jerk!

And that sucks about needing to wait even longer :( I don't even know what to say other than sending you lots of hugs. ugh :( :ghug:
you poor thing. i feel so bad for you. but try not to look at it as starting over. think of it as a process of elimination. you're down to 14 feet of intestine. that's a good thing!
could they at least maybe give you lortab or something for pain? that's the only thing that has worked for me, and it actually has a constipating effect, which may help your D.
my thoughts are with you. hopefully the tests will be sooner rather than later. :ghug:
Thank you flowergirl, i'm hanging in there. They can't give me anything unfortunately... :(
I hope that you are doing well with your treatment! How is that going???
sorry about the no meds. :stinks:

i'm doing all right. haven't had any reactions so far, just a couple of mild headaches. it's only been a couple days, but my butt is feeling better (i have skin tags and had a lot of pressure from inflammation, but it's getting better) and weirdly the crazy acne i've been having lately is going away.


I'm so sorry you are going through this Sunshine. :( I don't even know what to say really. I hope these next few weeks fly by so this can get all sorted out!!
Hang in there, Sunshine. Keep your chin up. It is going to get better- I know it will. God is there with you, holding your hand, and giving you comfort. He won't leave you. We are all here for you too!! :heart: