Newly Diagnosed and Totally Lost

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Jenisthecuteone
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 5/4/2009 5:52 PM (GMT -7)   
Hello Everyone,
My name is Jen and I am a 27 year old mother of two beautiful boys. I have been having mild to severe gastro issues for the past year now, and was recently diagnosed with Crohn's. The diagnosis was devastating to me, and I cried long and hard after reading up on it and possible complications. I am so worried that one of my children will have this disease too, but I try not to think about that. It has been a painful roller coaster ride for me, feeling semi-ok one day, and totally bedridden the next, and I feel like my whole life has been turned upsode down. I'm still trying to find out what foods are ok on my tummy, but have definitley cut out all whole grains, fresh fruit/veg, seeds, nuts, and most dairy. I am on Asacol 400mg, 9 tablets (3 tabs 3x daily), and vicodin 750mg for pain as needed. I also take a whole food supplement multivitamin and flaxseed oil and calcium supplements. My doctor is trying to get me involved in some drug trials/studies because he thinks I am not responding to the Asacol as well as I should...... I'm not too cool with the idea of being a guinea pig tho.... any thoughts on this?

Also, Has anyone else noticed really brittle, easily broken hair with this disease? I went from having hair down to my hips to shoulder-length within a year due to constant breakage.

I was really happy to find this site and I hope that I will learn more about my condition from all of you wonderful people, and I also hope I can be a source of support for you.
Thanks so much for reading


Jen

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 5:59 PM (GMT -7)   
Hi Jen, and welcome.

Why drug trials before you've tried the standard treatments, things like Prednisolone and Imuran? My understanding of most drug trials is that they only accept people who've been nonresponsive or have reacted to the traditional treatments.
Co-Moderator Crohn's Forum.

New meds thread


Jenisthecuteone
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 5/4/2009 6:03 PM (GMT -7)   
I have no idea. Like the title says, I'm pretty lost and new to all of this..... I will ask my doc tho.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 6:06 PM (GMT -7)   
Do you mind if I ask what country you're in, Jen? If you're in the US, what is your insurance like? If you're American, perhaps he is trying to get you free medication, as trials tend to provide treatments gratis???
Co-Moderator Crohn's Forum.

New meds thread


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/4/2009 6:10 PM (GMT -7)   
Welcome Jen. I'm sure you will get all of your questions answered here on this forum. Just relax and take a deep breath!

Wolfie
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Jenisthecuteone
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 5/4/2009 6:13 PM (GMT -7)   
I am in Michigan, USA. I have great insurance, Blue Care Network, that covers my meds (the most I ever have to pay for an rx is $11).

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 6:19 PM (GMT -7)   
Well, that's even more baffling. Perhaps one of our American members might be able to work out what your doctor's thinking, then. (I'm Australian).

However, I am glad to know that you have good insurance. As you can probably tell, a lot of our American members here have been having a lot of trouble with their insurance companies, so it's good to know that you're starting your Crohn's journey with at least *some* security.
Co-Moderator Crohn's Forum.

New meds thread


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/4/2009 6:34 PM (GMT -7)   
Hi Jen and welcome! Many folks are helped by following the Specific Carbohydrate Diet. If you wish, you can search this site and read all the threads where we've had discussions on it by putting "SCD" in the "search site" spot at the top of the page. You can also just google SCD. The main book on it is called "Breaking the Vicious Cycle" by Elaine Gottschall. Also there are many cookbooks written which are compliant and free recipes online. Part of the "diet" is making home made yogurt (fermented 24 hours to eliminate lactose) for its beneficial bacteria (for your intestines). I'm thinking of your little boys and how healthy this would be for them, too!!! idea Just throwing this out there... smilewinkgrin
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 5/5/2009 1:52 AM (GMT -7)   
Hi and Welcome to Healingwell. There are alot of good ppl here.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,,Celebrex and Humira. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/5/2009 5:57 AM (GMT -7)   
Hi and Welcome. I was diagnosed when my older daughter was 1, she is almost 22 now. My Mom had CD too, so I have basically lived with it my whole life. As a child of a sick parent and as the sick parent. You will have times when you are sick, that is a given, but you will also have times, possibly years, when you feel great. Your sons just need to know that you love them. Even on my worst days, I could snuggle on the couch with a movie, and so can you. My daughters would play on the floor by the couch while I rested, so please don't get too discouraged yet. With the right combination of medications and figuring out the right foods to eat, you will be feeling better and playing and mothering soon.

I too am wondering why your doctor is suggesting trials before some of the more mainstream drugs. Is your doctor affiliated with a major hospital that participates in trials and therefore he has more access to them? Is your disease in a vast area or really out of control? Questions you need to find out. I really think the best thing you can do for yourself is to educate yourself about CD, but you need to understand that while all of the things you read about MIGHT happen, MOST won't. The majority of Crohn's patients are out in the world living their lives hardly giving their disease a thought except to take their medication and then go on about their day. There are a lot of books out there, some just general information about CD, which is probably where you should start, and then some that delve more into treatment options and diet options. You can get books from your library, bookstore, or the Crohn's resource center over on the right hand side of this page. Also the CCFA.org has a lot of information

You need to get your disease under control, then probably be on some sort of maintenance drug, and figure out what type of diet works for you, low residue, SCD, Makers Diet, No Gluten, there are basically a bunch out there and we all follow what works for us. Keep a food journal to see what bothers you and what doesn't, thats the best place to start.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


hama
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/5/2009 7:42 AM (GMT -7)   
Welcome Jen, I'm new to the site but not new to CD. I've had it since I was 7, and now I am 22. It's been a struggle, I've just gotten out of the hospital a day ago. Drs are still trying to find the right things for me, but in my case, I just HATE taking pills with a passion. Even if it's pain meds. I've never been one to take my meds. But I honestly think you should talk to your dr about remicade and or humera (sp?) I've tried both and seemed to work great! But then one day for some unknown reason my body kept rejecting them, I turned out to be allergic to both. But for the time being that I could take them, I was good as new. Never honestly had a flairup while on them. So you should really think about talking to your dr about those. I've had CD bad since 05. I've ended up with an ileostomy for life now. But I'm pleased to say I'm on no meds as of now, except for pain. My CTs show everything is great and no ulceration anywhere. Along with my blood work, that was great too. So don't get too discouraged just yet, things will look up.

Hope you feel better! And like everyone says, you will be back to playing with your children and so on!

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 5/5/2009 8:29 AM (GMT -7)   

Hi Jen

So sorry to hear that you are having such a hard time. Crohns can be like that, cant get out of bed one day and ok'ish the next. You will eventually learn how to live your life around the illness.  I agree with some of the other postings, that you should try some different drugs - those traditionally used for treating crohns before trying anything trialed.

The hair issue, my hair shows signs of stress when Im in a flare such as falling out and becoming brittle. My hairdressers always knows when I am taking steriods because my hair changes, I never have to tell her.

Talk some more to your doctor about treatment. and good luck keeping smiling (if you can)

 

kerry


Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


Wyzwmn
Regular Member


Date Joined Apr 2009
Total Posts : 21
   Posted 5/5/2009 9:06 AM (GMT -7)   

Hi Jen

 

I'm also relatively new to this forum - but already I've found it hugely supportive and very very informative...

 

If I may suggest...

 

1.  start an intake diary - everything you eat...if you are one of the lucky one's you should be able to begin to see patterns around what you eat/drink....some of us are dairy intolerant, some wheat, some fiber...some coffee, some soda....some can eat raw foods, some can't etc

 

2.  Also record your menses and how that affects your Crohn's (turned out to be a huge factor in my case)

 

3. Find a way to make sure you get enough sleep (for me it's a minimum of 8 hrs a night) - if you don't sleep you don't heal...and being well rested helps you keep your stress levels down...

 

4. You have to become a personal health advocate for yourself...

 

5. Read everything you can get your hands on about this disease and develop a sense of "pooh" humor

 

6.  Cohn’s can and will affect all parts of your body and your life...so learn to really stress the positive in your life and bide your time when the proverbial hits the fan (my family calls it my Zen periods as I am determined to live my life as best I can around this disease)

 

7.  I'm CDN as a result the medication most commonly prescribed at first it salofalk...I've been on it for years and been successful...but there are side effects...one of which is hair loss..so I now shave my head daily in a successful attempt to stop being self conscious about it

 

8. Don't be afraid to ask questions and don't take anyone's response as gospel...there's no such thing as a dumb question...besides we're all flying by the seat of our pants here as there flat out isn't enough money being spent on finding out the definitive cause of this disease...the commonality seems to be pain - strive every day to not let that rule your life....

 

Tall orders eh?

But well worth it to re-discover a quality of life worth living...

 

I wish you peace....

 
 
WyzWmn©
"Live the light, light the love, smell the coffee, eat more flowers, don't forget the faeries, mind the moon and, remember, what goes out comes back in a big way!" Kat Smithey A Dianic Witch...
53 year old woman, bald, cranky :)
diagnosed 20 yrs ago - in "remission" for 6 years!~


atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 5/5/2009 9:35 AM (GMT -7)   

Jen,

Welcome to Healing Well. This forum has been a great source of information and emotional release for me. There is a vast amount of knowledge and experience with this disease from those on this board. Don't be afraid to ask any questions. The only stupid question is the one not asked.

I went through a flare last year and spent 8 weeks recovering from surgery. I was always having my four year old daughter come up and lay with me on the couch in the evenings after preschool to spend my time with her. Enjoy your good days and focus on feeling better during your bad days.

I have really relied on my faith to help me through some of my more difficult time. I read Tony Dunge's book "Quiet Strength" during my recovery last fall and found a scripture from the Bible that has become my motto with this disease. It is 1 Corinthians 4:8-9: "We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed." Another quote (and I don't remember where I got it) that helps me is "Inch by inch, life is a cinch. Yard by yard, life is hard." It helps me to remember to focus on the present instead of looking at the future.


Shawn
 
Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 6 weeks, Omeprazole CR 40 mg/day, Percocet for pain, Lomotil, & Phenigren PRN


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 5/5/2009 12:46 PM (GMT -7)   
Hi Jen,

Your doctor seems a little bit overanxious to try trials to me... I would question if he really knows what he is doing. Asacol is the mildest medication and barely works for anyone, and it is very rare to achieve remission through Asacol alone (even as a maintenance med, it isn't very useful..). I would suggest you look into other medications first. I would not worry about not responding to Asacol, it is very rare that it will actually be enough for anyone. This disease can definitely be a roller coaster. I am newly diagnosed as well, and I am finally getting better after not responding to Pentasa (same as Asacol). I have been on Entocort for 2 months now and it seems to be helping, but I am still bleeding a lot, so I may need to switch to Prednisone or something stronger sadly. Good luck, I'm sure you'll find that you can start having mostly good days and only feel bad on the rare day instead, like most of us. Most people can go years symptom free with the right medications. Good luck!

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/5/2009 2:50 PM (GMT -7)   
Hi Jen sorry to hear about your troubles you were saying that the DOC wanted to try trails and studies there about Remicade and Humira which someone has already said here don't worry so much about your kids getting this i had this for a long time and they still don't know what causes it. Jenn

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


SallyC
Regular Member


Date Joined Nov 2004
Total Posts : 158
   Posted 5/5/2009 4:25 PM (GMT -7)   

Hi Jen,

I hope you find a medication that works for you.

I saw that you are from Michigan and was wondering what area. I am in Kalamazoo and have a wonderful doctor but I am also familiar with the Detroit area as well.

Hang in there! It does get easier with time to manage this disease.

Sally


Sally
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 5/5/2009 5:09 PM (GMT -7)   
Hi Jen. I'm from Michigan also. I like my doctor, but he knows that I will always listen to him, do my own research and then decide on a treatment plan with him. It's not always what he initially suggested but so far, things have worked out OK. Please feel free to email me if you have any questions about doctors in metro Detroit. Feel well. SB
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08. Back on Pentasa as maintenance.


Jay25CA
Regular Member


Date Joined Jul 2004
Total Posts : 114
   Posted 5/6/2009 1:55 PM (GMT -7)   
Get on the SCD diet period.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/6/2009 3:36 PM (GMT -7)   
Actually the SCD diet doesn't help everyone and it's not a cure.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 5/6/2009 4:51 PM (GMT -7)   
This forum will be very helpful Jen! It has helped me in knowing there are others out there that are going thru the same thing as me and understand. I first got sick while pregnant with my oldest daughter who is now 3 1/2. Because they didn't figure out or couldn't really figure out what was wrong while I was pregnant, we sold our house and moved back close to my family in a panic because I was so SICK all the time. I totally understand your feelings about your kids having it. I finally found a med that gave me my life back so that I was able to have another baby last year. Although I did have a bowel resection because of being undiagnosed for so long, the damage was done. I tried 5 combinations of different drugs over a 9-12 month period before I went on Remicade which has been a live saver to me. Trust in your GI and if needed get a second opinion. Keep a food journal so you know how your system reacts to things for future reference. Stress is a big deal for me as well as some others on this forum.

It's a trial and error period so to speak to find a med or combo of meds that works for you. Hang in there!

SCD isn't a cure all for anyone and everyone that tries it. Every single person is different and each body reacts differently to diets, meds, etc.
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks

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