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So what do I do now?  I dont even know what this is, but I do know how terrible it has been the last two months of my life.  I just graduated and this was suppose to be the best summer of my life and I have been on the couch the whole time. I am so ready to get better.

 Reply posted for alanschachter.

Aleia went to her GI doctor today. it went well. she gained eight pounds and her heart rate was normal. he is going to keep her on one endocort a day for three more weeks then discontinue it all together. he ordered alot of blood work and i spoke to the kidney specialist and she order alot also and her primary doctor,which i work for,ordered a few tests as well. her gi doc thinks that since aleia was so sick for the past three months that she caught a random virus which brought her right down. becausew her colon and esophagus looked great last week in the hospital.so jopefully this was just a virus and we are done with it. she feels great right now.. a hundred percent...i hope it continues.

 Reply posted for Aleia18.

I'm so glad your daughter is out of the hospital and was having a good day yesterday and was able to have fun at the football game.  I know it's so hard watching our kids go through this, trying to be strong for them. I think after my daughter having UC for almost 5 years we just have to take one day at a time.  My daughter is moving her things up to college now.  I'm hoping she will be ok there away from us.  She isn't that far but I still worry.  Last year when she transferred, she was sick every day but 2 weeks with step and tonsilitis and needed her tonsils removed after the quarter was over.  She stopped her Azathioprine because she couldn't fight off getting sick.  What medicines is your daughter taking?  Does your daughter have PCOS (Polycystic Ovary Sydrome)?  When you mentioned your daughter has nodules on her thyroid, I remembered my friend telling me her daughter them on her thryoid and she has PCOS.  My friend's daughter changed her diet radically and lost a bunch of weight to keep her PCOS under control. 

 Reply posted for EZ.

i hate this disease to. aleias started three months ago and it hasent let up till today,in which she is having a great day.she got out of hosp yesterday afternoon. she had an ultrasound of her thyroid this morning cause at the hosp during ct scan of chest they found a nodule on thyroid,today during ultrasound they found six nodules,for cysts and two solid. she will need nuclear scans and bloodwork,she needs iron infusions in two weeks and im not sure about the heart echo done yesterday but i read somthing that looked worrisome so i will ask her doctor on wed. but tonight she was at the school football game and she looked great and told me she felt great.she has thirteen prescriptions to take daily and she hates pills.  the blood transfusion at hosp got her feeling much better,it lowered her dangerously high rate,her resting heart rate was one hundred forty to one hundred seventy,after the transfusion it was fifty nine...excellent.  hope ur daughter does well as well, this is killing me inside. i hate this helpless feeling.i thought i was losing my daughter this hosp stay,im so afraid at times i feel i cant breath because im afraid she wont make it through the next time, this is so new to me...and im  very afraid.

 Reply posted for Aleia18.

I hope your daughter is feeling better and able to go home.  My daughter is having a little blood and mucus when she poops.  Her doctor said to keep taking the Canasa plus the Lialda and probiotics.  Her stool samples came back normal.  She doesn't understand why there is blood when she poops but her stool samples are normal?  Her doctor doesn't have her blood test results back yet though. She's really going to watch her diet.  When she is in remission it's like she doesn't have IBD at all but then all of a sudden there's a flare up and worry and panic set in.  We all hate this disease!!  I hope there is a cure soon!!

 Reply posted for alanschachter.

hi..thank u for the link. i havent looked yet. i dont think aleia has any symptoms from the cdiff. she doesnt have diarrhea or anything like that, actually i have no idea what c diff is so i should read that. even though she is positive she is not having bowel issues. she has an extra bottle of flagle im gonna keep on hand if i get it since that is what they were prescribing.... this is all so much.

 Reply posted for EZ.

Hi...How are u and especially how is your daughter doing? is she feeling better? what was the outcome or are u waiting for results? I will keep her in my prayers to feel better. Aleia is doing really good.  Her heart rate after the blood transfusion has returned to normal. at resting before it was one hundred forty to one hundred seventy BPM now its about seventy. The transfusion worked as the doctor has hoped. She will need the iron infusion in a week or so and i really like the kidney specialist that she now has. she wants to follow aleia closley through this disease. i still dont know if its crohns or uc. aleia had that bloodwork you mentioned but it did not differentiaite between the two, she has a follow up next week with gi doctor,i will ask him then. she is off all iv now and just sitting here waiting to see if we can go.  i guess we r waiting for bloodwork for anembia and kidneys.  I hope this is finally the time this will be under control. hope ur daughter is feeling good as well.

 Reply posted for EZ.

I also forgot to mention. aleia took her stool cultures to the lab and is positive for CDiff. so everyone that comes in her room needs to have gown and gloves except for me and family who have already been exposed.

 Reply posted for EZ.

hi...thanks for ur note.aleia is in the hospital again. she was in last week for three days then we came home and she was admitted tuesday.as i type this she is sitting on her hospital bed getting a blood transfusion. they admitted her because they thought she had blood clots in her lungs but after two ct scans it shows she does not. they put her on iv blood thinners for a day just in case before they had the ct done. she is critically low on iron.very anemic thats why she is getting the blood transfusion right now. she had a colonoscopy and endoscopy this morning which was both good. she has small colon infection but her colon looks great and she has thrush in her esophagus which they are treating. her creatine level was rising and she had another kidney infection,but her numbers are back to normal today.her WBC was high,but iv antibiotics and now normal. she had kidney ultrasound and they look great. we are getting over the hurdles she also needs echocardiogram.her pulse is about one hundred forty when resting.way to fast. so she needs heart test,but being so anemic they said u could expect that but they need to make sure nothing else is going on. she feels better today.ate well. really wants to go home.

 Reply posted for Aleia18.

How is your daughter doing?  Did she start school?  My daughter is having a mild flare right now.  She saw her IBD specialist on Friday.  He said he sees at least 4 patients a week that have bacteria and not a real flare so I'm hoping that's what it is.  She had to take a stool sample and poop in a bag and put the samples in 4 bottles.  Luckily I had gone to the lab the day before with the Rx from the doctor so the lab gave me the 4 bottles for the stool sample and 1 bottle for a urine sample so she could do all that at home instead of at the lab.  Yesterday I took her to the lab to turn in all the stool samples and urine sample and she took a blood test.  The doctor also Rx Canasa and Rowasa Enemas but the Rowasa doesn't help my daughter but the Canasa seems to be helping.  She is also take 4 probiotics a day of 50 Billion so she's taking 200 Billion a day instead of the 2 she takes normally plus she is taking 4 Lialda's.   She is really watching her diet too.  I hope our girls get better soon.

 Reply posted for alanschachter.

thanks...i appreciate ur help. i really dont know alot about uc or crohns. i dont even know for sure which one she has.  the doc and pathology reports from colonoscopy said sever ulceritive colitis. but then she got all the ulcers in mouth and esophagus and that would suggest crohns. then that blood test promethis, somthing like that doesnt go either way. i just want the right diagnosis cause apprently they are both treated diffrently,though both have same symptons. ..frustraiting.  shes so uncomfortable tonight,just achy in all joints. she stills needs ct of abdomen to look at her liver for that spot they saw on ultrasound, i guess that will be soon, she is on one endocort a day,two cipro a day,one potassium a day,four lialda a day,two protonics a day which is like prevacaid i quess. she does not like pills at all.not good with pills, sometimes she will get them all down then throw them up, she just cant do it, she has a fever blister on lip and sore throat. she has never been ill so this is quite the challange. she was suppose to start college tommorrow.not well enough.  hope she pulls through this im  scared for her.

 Reply posted for alanschachter.

i dont know what else to give her for joint pain. i do have tylenol. today is a difficult day as the electricity has been out since four in the morning. all the food in fridge and freezer is getting warm. its been sixteen hours. hurricaine irene came cruising through here last night, packed some good winds. so aleia and i are just sitting here in the dark, shes grumpy today....i understand. she doesnt feel good.

 Reply posted for crogers8705.

thank u for the post. aleia is home from hospital but still doesnt feel that great. she has alot of joint pain in her wrists and all other joints. she is tired. i gave her ibuprofen for the joints,feels a bit better. i guess its migratory arthritis and it goes hand and hand with uc and crohns.  still dont know if its for sure uc or crohns. the one doc in hospital says for sure crohns but i should know soon. i think its crohns but not for sure. three months now this is going into. such a challenge.  i dont like to use caps when texting, sorry...lol  thanks again for ur post,aleia likes ur photo.  thanks again, its nice to know she is not alone.

 Reply posted for Aleia18.

It is very tough at the beginning. I missed almost 5 months of work. I didnt understand my condition (UC) at the beginning and the 2 doctors I saw wasnt much help. Everyone reacts different to medicine and food but it does take time to find that right balance. Im 3yrs in now and after I spent a week in the hospital and found a new doctor I was right on track. Like I said the beginning is tough but it gets better when you figure out what it takes. 

 Reply posted for EZ.

In the hospital now with Aleia. She was admitted yesterday. Her potassium was very low and white blood cells are high and with fever.  She did have that blood test done,do not have the results yet. she had a CBC and CMP, vitamin D,Vitem B and mono and lots of other bloodwork. Blood work was out of whack on alot of things. Her fever is gone today. they gave her three bags of potassium and four bags of fluid. theydid a ct scan of abd,no results yet but was told if ct was negative she would have a study like colonoscopy today to find out where the high wbc count is coming from. she feels good but soo hungry. not allowing her to have food yet , but they let me  spend the night because she has a private room which i am so grateful. she may be eighteen but she is still young and needs her mom.  hoping all resuults today are good. 

 Reply posted for Aleia18.

It's a blood test that will determine whether you have CD or UC.  I'm not sure how much it is but it's in the hundreds. 

 Reply posted for EZ.

i have never heard of that? what axactly is that and do u know about how much it cost? i work for her pediatrician. i have been there eleven years with her doctor so i know she would give me whatever i asked for.

 Reply posted for Aleia18.

Did you daughter have the Prometheus blood test?   It's expensive and some insurance companies won't pay for it.

http://www.prometheuspatients.com/Products_Diagnostics.asp

 Reply posted for alanschachter.

Hi.. its Tammy, aleia mom,i will just be using her page since she doesnt get on the computer much and i can actually respond over my phone. these kids today have so much technologie to play with,it amazes me. so im texting this,i hate to use caps.lol aleia had her scope she has alot of ulcers in her middle and lower esophagus. they ranged from seven milimeters to twelve milimeters. i asked if this was chrons he said it would appear to be but if shes been on the steroid endocort for several weeks he wouldnt know why these would appear now. i forgot to tell him she had alot of mouth ulcers that just went away last week.he asked if she was taking her steroids with fluid and not dry i said of course she was,he was thinking they were getting stuck in her esophagus...i said no thats not it. so she is in pain and we have to wait for biopsies to see what it is.  

 Reply posted for alanschachter.

Thanks Alan, its aleias mom. ur input is very helpful. aleia  is not doing to good today. she has alot of pain in her esophagus. i called her doctor today and they are doing a scope tommorow. they are thinking that her diagnosis has moved to crhons disease instead of the uc.  even though the path report states uc, her symtoms are more on the crhons side. so will no more tommorow she is quite uncomfortable today.  thanks for ur input and thoughts.

 Reply posted for Aleia18.

Thank you Alan, this is Aleia's mom.  Thank you for the note for her.  We read it together the other night.  I read alot and will get that for her to read.  I'm trying to talk her into support groups but some people are saying at her age it might be to depressing to hear the woo's of other people. She doesnt know alot about her condition.  She does know its life long but not a whole lot else.  I wish I could find a support group for teens and young adults but I have not found any yet but will continue to look but then maybe I shouldnt push on this, less is best... I really dont know this is all new to her and me.  I wish I could take on this for her, she's just not well like she always has been.  Its hard to see her suffering with this.  I am always upbeat though around her.  I never let her see me worried, but I am.  But today is a good day and yesterday was to.  I am hoping that she is turning the corner on her first flare up.  She is at the movies right now with her boyfriend and was smiling when she left.  Thank you again.    Tammy

 Reply posted for EZ.

Thank you for the post.  This is Aleia's mom and she said she wouldnt mind if I wrote ya back.  She is into texting her friends, its hard to get her on here.  I appreciate your medicine tips.  She see's her GI doctor next Wednesday. I want to ask him about the diffrent things your daughter takes and see what he says.  I did ask him about diet restrictions and he said .... none.  Aleia doesnt have the best diet.  Fast food usually and soda.  Today was a bit better then all the other days, yesterday was also.  She came to my work yesterday, I was so shocked to see her up and out.  I work for her pediatrics doctor.  My coworkers were happy to see her, one of them told me today that when she saw Aleia yesterday she had to turn away and she was crying because she was so thin.  This was the first time she had seen her in the two months.  She said she cried throughout the night and prayed for her.  She said she was shocked at ther weight loss and her coloring was a bit off and she didnt look good.  But what she didnt realize was that she looked much better then she had, much better.  It made me a bit sad to know that she felt that way. But I shouldnt dwell on it, becuase tonight she is at the movies with her boyfriend of two years.  If she is up and out and not on the couch she is doing better.  She takes three endocort in the morning and four Lialda a day.  Thats all.  I bought her zinc also. She still is bleeding and is very tired and not eating but alittle.  I really hope that changes.  She refuses to go on the prednisone, I told her if this endocort steroid doesnt work she will have to.  I appreciated your advice so much, I really do.  Thank you for hearing the words of a complete stranger and reaching out to my daughter.  Thank You again, Tammy

 Reply posted for alanschachter.

Thank you and I will read that. Thanks for the advice. Aleia

 Reply posted for Aleia18.

My daughter was diagnosed with UC 4 1/2 years ago and 16 years old.  She has been on many meds and seen many doctors.  She is currently seeing an IBD specialist that she loves.  I think having a doctor you trust and reading all you can about UC will help.  Stay on the ccfa website for information.  There is some very outdated information on the internet.  You will hear all kinds of people telling you advice.  They get IBS mixed up with IBD which is different (that drives me crazy!!)  My daughter is doing great and you will too.  She is finishing up her senior year at UC Santa Barbara and loving every minute of it.  College's have a disability office you can go to for help if you want.  My advice is really watch your diet.  I know many docs don't believe this but my daughter's current specialist does as he says many UC patients have "bacteria overgrowth" and watching your diet:  no junk foods, no processed foods, no soda, no alchohol..all that helps.  My daughter takes 2 probiotics per day Ultimate Flora Critical Care 50 Billion plus 4 Lialda's, 1 Women's One a Day, 1 Oscal and also 1 cranberry supplement.  It will be trial and error at first as one thing may help one person and not another.  You will get better.  Also one of her doctors said there will be a cure for IBD in the next 10 years so there is hope plus all kinds of research going on.