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Intro of Kim and newly dx with Crohns

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Posted 6/14/2010 8:24 PM (GMT 0)
Hi everyone-

I am Kim in Florida- 47 years old.

I was dx with Crohns May 25th. I LOVE my GI and she is connected to Univerity of Miami and I have already been to UM for a second. My GI is easily accessible, and answers all questions. My husband has had kidney caner (doing VERY WELL) so I know how to advocate and plan to be a team player in my treatment. I also know how to be a BULLDOG when it comes to Insurance.

A dx of RAF is pending, I also have a medical relationship with a rhuemie so I am covered there.

I am currently taking 20 MG of pred, tapered from orginal 40 mg pred, Bentyl, 3 x a day, Ascord HD 3 x a day. Vit D (2000 unite) Folic Acid, Caclium Citrate....I did go to the family doc for Ambien because I have had insomnia all my life, and new I was going sleep deprivation due to pred. Pain is gone, still 3 to 4 formed BMS a day.

My big question---

I have no hunger... (I usually react opposite to drugs). I am losing weight, rapidly, I am forcing 3 high protein but low residue meals a day. But my diet is consisting of

Chix/Rice

Egg/Rice

Applesauce

Banana

Almond Milk

Toast

If I try to eat anything else, I don't get pain, but naseau-- after two bites, I can tell it is not going to work.

Due to this lack of eating, severe fatigue--- I am doing what I have to do (teaching summer school) and coming home and sleeping.

I know I am type A-- and it bugs me that I am not on my A game.

I have lost 25 pounds... I do see my GI on Wednesday-- I saw her Thursday last week and she said to increase protein and she was concerned about my lack of appetite and the fact that I looked so pale.

On Pred in FLORIDA-- yes- be careful to stay hydrated, I experienced something just short of heat stroke Saturday. My husband is a paramedic and recognized what was happening.

TIA

Kim

Posted 6/14/2010 8:44 PM (GMT 0)
Hi Kim and welcome to the best Crohns forum out there, although I am sorry you have to join our group. Have you had any testing lately? I am wondering if you have a stricture or something going on that is affecting your appetite. I know when I have had a stricture, nausea was an ever present irritant. Hope the doc gives you some answers, and you get feeling better soon. Hugs!
Posted 6/14/2010 9:00 PM (GMT 0)
Hi there, I am also in Fl. I am also a teacher as well. I found that when I was in a major flare up, Ensure and Gatorade got me through some tough times. Also, try hard boiled eggs, fish if you can and cooked (almost mushy) carrots. I also ate a lot of chicken nuggets (baked, NOT fried) "Eat Well, Stay Healthy Kids" makes the nuggets and they don't have the oils. Good luck!
Posted 6/14/2010 10:29 PM (GMT 0)
I lost 15 pounds on predisone. I had no taste or appetite on it. It worked the oposite for me.
Posted 6/14/2010 11:57 PM (GMT 0)
Thanks-- for the replies! I will go out and get the chix nuggets and I am glad to hear that others had the same issue with pred.

As far as testing- I as just dx May 25- colonoscopy, endoscope, pill endoscope (which found the ulcer on the terminal ilium.) All kinds of bloodwork, bloodwork is still pending for two more autoimmune disorders and Vit d. So, no blockages....

Meds always work the opposite on me... so I bet that is it.

I happen to LOVE ensure...

Kim in FL

PS- hi to a fellow teacher! What county?

 

Posted 6/15/2010 12:51 AM (GMT 0)
Hi Kim -- I'm 47 too and was diagnosed in 2007.

I would be concerned about the losing weight despite all the meds. Seems like something is not quite right.

(I'm in the "ravenously hungry on prednisone" group -- currently on 40 mg in a 6 week taper due to a flare. Gaining weight.)

Welcome!
Posted 6/15/2010 1:11 AM (GMT 0)
I just wanted to Welcome you to HealingWell!! I am in the "eat everything in sight" when i'm on pred. Also, I comfort eat anyway...so..i never have weight loss problems.
Good Luck, i hope you feel better soon!
Posted 6/15/2010 1:14 AM (GMT 0)
I have had huge weight flucuations since I was in my 20's... and now we are thinking it was maybe Crohns all along. I do not eat when I am stressed. I am taking anti depressants and xanax as well....  getting so sick at the end of the school year (the teacher knows how THAT is) and being hospitalized, getting this dx. I am a little stressed, admittedly. And, summer school started today, and a lot of fires had to be put out... by me, as I hired teachers.

I see my Gi on Th- and I like her a lot and will be talking to her more about it.

I am a little stressed over the dx, because a neighbor's sister died of Crohns at 42- almost exactly a year ago to the date of my dx. And, honestly, I will be discussing that with my GI. But, that person was a smoker and a non compliant patient and went AMA a lot out of hospitals, refusing treatments and surgeries.

I consider myself a compliant patient, but a team player and an advocate (you have to be to teach special ed) So, I am professional in my behavior, but will not hesitate to ask questions. The GI knows I am a teacher and actually was referred by a teacher to me, so she undertands us!

So, I want to attribute some of this to stress--- but will address it at the GI.

Thanks again, because I feel like I am ready to do battle and learn all I can and manage this.

I am glad to see a lot of late dx people here. Everyone I have spoken to think it is so unusual to be 47 and dx with this.

Kim  

Posted 6/15/2010 7:32 PM (GMT 0)
Welcome to Healingwell Kim! You'll find alot of information here some you'll be ready for and some you won't. It is easy to get overwhelmed when your first dx.

I am 43. Was diagnosed at 37. I had a complete obstruction before they figured it out! I think I had to of had issues for a long time. Gut wasn't even right as a kid...didn't know any different. I also have Diabetes..so it'sa challenge now!

When I was first dx in 2005 with Crohns, Pred worked the opposite for me too. Wasn't hungry and actually loved all the energy. But lost alot of weight. Had to make myself eat. Pedisure, Pedilyte, and I also froze alot of yougurt and ate that too. no fruit though.

I see you  work with Special Ed kids, your husband had/has cancer/ and trying to work full-time! Ufta! as we say in MN:)

You have alot of your plate! Make sure you take it easy when you can! Do you have any kids at home?

You said you knew someone who died of Crohns? just curious what was the actual cause of death.

Again Welcome!

Heather 

Posted 6/15/2010 11:40 PM (GMT 0)
Hi Heather-

I don't have any kids-- unexplained infertility. My husband is doing well, we will have our 25th anniversary next month. His cancer is "gone" but RCC can re appear and we are doing follow ups 3 to 6 mos...on him thru university of miami.

I don't know the neighbor's sister exact cause of death- but it is weighing on my mind, and I will talk to GI about it. I know she suffered from crohns since her 20s and she was NON COMPLAINT. Smoked, drank and often went AMA. (My Gi probably saw her, she dr shopped and got a rep)

I am a little overwhelmed with info, and trying to work. This should slow down shortly, my husband is taking one of our dogs back to the breeder for training we can not do at this time, that needs to be done. That will help us out. Going down to 2 older dogs for 6 weeks. And, the pup will come back with all the ground work so my husband or I can resume --- we do a lot of dog competition.

My nephew is moving in next week and is coming to help with dogs, household chores, yard work, and dog sitting. My husband and I are actually planning a trip away for the anniversary, which we never could of done.

My students are medically fragile and homebound, the parents are being very cooperative and I dropped two students from my schedule. The prob is I need the $$.

Kim in HOT FLORIDA

Posted 6/16/2010 2:06 AM (GMT 0)
I sappose if you don't keep up with diet and Crohn med's it could get away from you. That is too bad that she died.

 

We had our niece move in back in 06. She went  full-time at college and wanted to  help with  costs! It was nice  to have another adult around in case we need something. I'm sure it will be good to have somebody help with chores and the dogs.

I have two daughters and have been married 23 years. Oldest getting married next month.  I watched her puppy last week and WOW...I forgot how much work they are! I  get pretty weak on certain days and it's hard to keep up with a puppy. Wouldn't mind adopting an older dog. Someone on the same speed as me (which is a very low speed)!  the company would nice.

Second daughter going to college for nursing. She'll be in her 3rd year.

Working with Homebound Children... what an amazing thing to do! I used to para at the local elementary school off and on. Occasionally, I would work in the special education room. I give anyone alot of credit for doing that as a living. It takes a very big big heart:)

Anyway, good luck to you and don't worry about being overwhelmed..it's normal! Give your self a good year to get used to the diagnosis. I came on this web-site fora  whole year before I could even write on it:)

Heather

 

 

Posted 6/16/2010 3:30 AM (GMT 0)

Welcome to this forum Kim. I was diagnosed three years ago at the age of 55. Had a colonoscopy, immediately admitted to hospital where I underwent more tests and Crohn's diagnosis before being released a week later. All the while having virtually no Crohn's symptoms. They found a stricture in my colon which I had surgically removed a year ago. 

Initially being told I required surgery or Remicade, I have done a whole lot of research, been referred to different GI's and two surgeons, talked to a lot of people and asked many questions on Healing Well forum. Real learning curve but like you said you have to be your own advocate.

Good luck and I'm sure you will find people very helpful on here.

Posted 6/16/2010 2:26 PM (GMT 0)
I'm like Jenny - cant stop eating, especially craving sweet things (not me at all) whilst on Pred and have put on weight. Don't want to lose weight like crazy but everyone says "you look so well", not so good when you feel like c**p.
Posted 6/18/2010 1:08 AM (GMT 0)
I spoke to my GI about fatality, she relieved me and said, more then likely the cause of death was something else, not crohns.

She reassured me and I "*think" she actually knew whom I was talking of.

She said, smoking, drinking and not following medication protocals probably was more the cause. She said, do not have anxiety of that. (I take meds for anxiety--- what person doesn't!?hahaha)

To Heather (Flowery)... thanks for the advice on the year! I think that will be a powerful reminder to me, because tonight I am overwhelmed and not feeling great. My husband is traveling this weekend, makes me a little nervous, but I have plenty of people watching.

Also to Heather--- would love to talk about the nursing school experience, I am trying to help my nephew out-- costs, schools, which is better, which is not? how do you decide?!

My students are my life and help me to feel normal right now. They are going thru their own med issues and totally understand. I am having such success in teaching them, I think I need the "warm fuzzies" and sense of normalcy in my life. PLUS- I have to go back to work FT in the Fall... if I go cold turkey in Fall... I think it might be good to keep to a schedule..?

I spoke to a fellow co worker tonight about it, and she really helped me to understand how I might need the teaching to see normalcy, she also advised keeping a diary of stressors... something I have not done...

Kim in FL
Posted 6/18/2010 4:39 PM (GMT 0)
hey, i have had cd for 40 years, I don't want to be alarmist, but i had a family friend in 1974 died from comp's due to crohns. That being said, nobody was sicker than i was in 1970, I went from 110 lb's and I was a just starting horse jockey career, i went down to 75 lb's and I couldn't evan walk without help, I was so weak and sick. so If I can come back from that, I believe most people with this disease will not die. My frien died from perforated small bowel and couldn't get to him in time and he was so weak, he was 25. but I'm the same way with med's pred, makes me have no appetite, i gained som weight by eating medical marijuana butter, then that started giving me anxiety

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