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Just learning what this is all about

Hello, My name is Monica. I have recently been informed my 17 year old daughter might have Crohn's and I am at a loss. She has not been diagnosed as of yet but this is what the dr's are leading to. She has her upper and lower GI on Tuesday, However, I am so frustrated and don't know what to do at this point. Susan (my daughter) is in pain all the time and every time she eats she has to go poo. She can't hold food in at all. I am so lost cause the dr's say there is nothing they can do right now till after she has the GI done. About 2 years ago she had an upper done and there was a bleeding ulcer and now she has gotten worse. I feel helpless I can't do anything to make her feel better, she cry's all the time and it hurts me so bad. I want to make it stop and the dr says they can't do anything and Susan wants me to take her to the ER cause she hurts so bad. the only med the dr will put her on right now is Bental for the stomach spasms. If you have any suggestions please help me help her. I am looking for anything I can do to make her more comfortable until Tuesday.

Thank you for reading,
Monica,
Susan's mom
 

Crohn's 35

Inactive Account
Hi Monica, welcome... I am so sorry you and your daughter are suffering and yes it is hard to deal with the disease from both standing points you and your daughter. I have Buscopan for spasms and they dont do squat for me. so her test is coming up Tuesday and has to wait? The only thing she can do is just drink Ensure for nutrition and avoid food until she gets into see the doctor and get some kind of treatment. A few people here are waiting the same as your daughter and dx of Crohn's and or Colitis is very hard to detect. This is very hard on you as a mother I know, hard to see your kid go through so much pain. I can't fathom what you are going through. She needs something for pain, maybe OTC Tylenol 1'a could help. You will get some great help here, everyone is great.

Having a heating pad works great too. In the meantime Ensure is your best bet and water, until she gets the test done. Sorry not much help but you sound you and your daughter need a ((hug)). Keep us updated ok. When she sees the doc on Tues, get something for her pain. Take care.
 
Thank you Jettalady,
I keep trying to tell her there is nothing right now that can be done. I have given her regular tylonal and for her to sleep I give her one tylonal pm and one extra strength tylonal. She still can't sleep well. I have not tried the ensure but I ma going to the store right now to get some. I just hope she can drink it she has such a bad reaction to milk it makes her sick but I know it is all part of this (lactose intolerant) her legs hurt so bad and her ankles swell the size of baseballs. she has been like this for 4 days now where she has not even wanted to get out of bed. she has not left the house. not even to go out and sit on the porch. I am so frustrated cause her blood work and stool samples came back all normal. If she is so sick how can it all be normal? I am confused.
 

Crohn's 35

Inactive Account
Sorry Susan is not good, but Tylenol #1's have Codeine and helps a bit more. The ensure will help also to sooth her tummy. Most people like the Strawberry flavour. What country are you from? Maybe others can help in your area. The Ensure most everyone can tolerate and it takes pretty good. Boost is a bit chalkier but hopefully she can get something down. If she starts to vomit and can't keep nothing down, I would take her to ER. The leg cramps are probably from lack of something in her system. It took me a year to get diagnosed but that was many years ago, test are better now but the usual best bet is a Colonscopy. Almost all Crohnies are lactose intolerant. Get her the Ensure and Pills it should hold her over. Let us know!
 
Sorry to hear you and your daughter are going through a rough time. Hope the time goes by quickly for you two so you can get some answers. You'll be in my prayers :)
 
Hi Monica. I am truely sorry that you and your daughter have to go through this. It is never easy when waiting for a DX and trying to get help to even just ease the pain.
I started out suffering from an ulcer and than began experiancing the pain in the upper quadrant area. I also would just curl up into a ball and cry. Finally it got so bad that my wife took me to the ER and pushed the staff to do something. I was admitted and had a bunch of tests done. This is how I finally got my DX. This was after suffering for 3 yrs or so with what one DR called a nervous stomach. Well yes I guess I had a nervous stomach alright, from worrying and wondering what was happening and when was it going to stop.
So for you have gotten great advice about what to take to rest the stomach. To help sooth her stomach try having her sip on hot Jello water. Just put the package of Jello into a glass measuring bowl and add 2 cups of boiling hot water. Let her sip on that and the heat should help sooth the pain. She does need to do the Ensure or something along that line to help keep up her strenght. Just make sure she does a liquid diet for the next few days to give her stomach a rest.
Once everything has calmed down, than try going to a soft diet, scrambled eggs, mashed potatoes, anything soft. Try to stay away from beef ,vegetables, nuts, fiber, etc.
One thing that is always safe for me is the scrambled eggs with just a little salt and pepper. Start with a little at a time. And keep a record of what she handles good and what really causes problems. Get her on vitimins and it wouldn't hurt to have her take a good Probiotic, get them from a health store and not a big chain store. You never know how long they have been sitting on the shelf. Get one that requires refridgeration.

Good luck Monica and please let us know how things turn out.

Huge Hugs

Greg
 

Astra

Moderator
Hi Monica
and welcome
hope you get some answers real soon and Susan can manage over the weekend with her pain til the tests,
we all know how you are feeling and are here to offer any support and advice
sending you both a big hug
losa luv
Joan xx
 
hi Monica.... reading what your daughter is going through brought back so many memories - this was more or less me at that age.... and i can also identify with how you're feeling as her mum, as i had to watch my own parents worry and feel helpless back then.... so hugs to you both.

regarding symptoms and diet, you've already been given some excellent advice on here - most of what i was going to suggest has been said... i would certainly err on the side of liquid and nutrition for now, plus whatever painkillers don't upset her... i'd keep clear of nsaids though, as she already has history of ulcers... warmth helps, hot baths, or a heat pad as suggested, or a hot water bottle.

the other side of things is the emotional aspect... not only is she in pain and not well, she'll be scared and feeling lost - please reassure her that many of us have also gone through what she's going through right now, and come out the other side. this is the worst part - having the symptoms but not being at that stage where there's proper medicinal help at hand - but hopefully it won't last long.

when you say 'doctor', is this your gp or a consultant/GI? if it's just the gp, you need to get an urgent referral to a GI. and if you think she's getting worse, temperature rises or any other worrying changes, go to ER.

i don't know whereabouts you live, but look up NACC and see if there's a support group in your area - they are a wonderful support network, and may have a group for teenagers. even if there isn't a local one, you can still contact the nearest one, or the main office.

i hope the weekend passes quickly for you both... please keep us updated, and we're here for both of you.
 

My Butt Hurts

Squeals-a-lot!
Hi Monica. Sorry that you're here, but glad that we can be of support for you. You might want to have your daughter join us too.
You might want to google 'low residue diet' for some ideas of what to have her eat. It's not going to fix her, but it may help even if just a bit.
You mentioned that she is lactose intolerant. I believe that some of the supplemental drinks (Boost, Ensure) are made in a lactose free variety. Look in that same aisle in the store, even if it's a different brand name, I'm sure it will be right there. Or you could try the Carnation Instant Breakfast drink powder with soy milk or whatever she can drink. I used to mix mine with flavored coffe creamer to make it yummier.
Best of luck at the appointment on Tuesday. Keep us updated.
 
Hi Monica.. Im sorry you and your daughter are going thru this at the moment. It must be terrible to see your daughter in so much pain... it brought back bad memories for me with my mother too having to go thru similar with me at the same age. Hopefully she can handle a shake mix like ensure also try one with soy milk instead of normal as I drink soy and don't have many issues but can't tolerate dairy well. Have my fingers crossed for you guys hope you get some answers from the test on Tuesday and your daughter can start treatment and get better soon. xxx
 
Hello Monica..

I was just reading through this thread and I feel so badly for both you and your daughter...what a worry for a mother...what a frightening experience for your daughter.

I'm sure you will get results from the tests she is having in just a few days...
in the meantime you have been given great advice from others on here.

Try to make her as comfortable as possible and rest..(for both of you)

Let us know how she makes out after the tests please.

Heart Hugs~Nancy
 
Thank you to everyone for the advice and the support. I ended up taking her to the ER the other night. The dr there said her blood work numbers were a little elevated and if it WAS Crohn's the numbers would be "sky high". They gave her fluids (she was dehydrated). They gave her pain medicine and then sent us home saying that with her blood work being almost normal that when we had the scope done "they would more than likely NOT find Crohn's." I told her then if it is not Crohn's then tell me what the hell is wrong with my daughter? Please. Yes the Dr she is seeing is a pediatric GI dr. He is wonderful he is the one that would not give up last time she had this belly pain and he found the ulcer. I love him his name is Dr Ogunmola here in Fort Worth, Texas. The dr at the ER was no help to my daughter the only thing I was thankful for that night was she was relived of the pain for a few hours. Well it dulled the pain. Again Thank you so much for the advice and support. I will keep everyone updated. She starts her magnesium citrate today and will have to drink this stuff for 3 days I have to really watch for dehydration this weekend.
 
Monica, when I was finally DX my blood counts were not elevated. They found it through biopsies. Everyone is differant with thier DX so elevated counts are not a definate measurement of active CD.
 

Crohn's 35

Inactive Account
I too didnt have the typical elevated blood counts or fevers and hardly ever at the same time. This disease is very hard to diagnose, and sometimes takes a longer time than we want. I am surprised they are prepping her with magnesium citrate, I havent used that prep in many years. The newest is Pico salax, easier on the stomach too.

Please keep us posted.
 
Me too.. I didn't have elevated bloodwork and haven't the whole time I was being diagnosed and since then. The only time my bloodworks went sky high was when I was reacting to Imuran. I did ask my GI about this and he said everyone is different and some peoples levels just didn't react or change to suit what was going on in their bodies. I still had numerous ulcerated areas and all the classic symptoms for crohns. Good luck I hope you get some answers off her GI soon.

Jetta I think we might still be in the olden days too our prep is disgusting citrate stuff. Boo!
 
Im 21 and just was diagnosed with crohn's, I had the exact same sypmtoms as your daughter and more. The leg cramping and swollen joints is actually arthritis which crohn's can cause. I felt the exact same way your daughter felt when these things were going on... hopeless considering things seem like they are getting worse and worse by the day and there is nothing you can do. I was in so much pain I couldn't eat or drink an walking around wasn't even considered. My mom had a very hard dealing with this too, she seemed like she was in more pain than I was. Just make sure she eating and drinking that is the biggest factor. Once she has these test, the door will open more insight to what actually is going on. I hope its not crohns! For some leg relief have her take a nice hot bath, make sure she is walking around at least a little otherwise she will cramp more and when she is sleeping or laying around prop her feet up this will reduce the swelling and the cramps!
 
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