I just found out yesterday I have crohns

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AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 10:26 AM (GMT -7)   
I have had Crohn's symptoms since I was a little kid. I had my gallbladder out at 17 because there was bile in it..they insisted this was causing all of my problems. After that was out it just got more intense. I went to doctor after doctor and oh its nothing, its the stomach flu, its just stress...blah blah blah. I'm now 23 years old and found out yesterday that I have Crohns disease I asked the doctor how bad it is and he said that mine is pretty severe. Unfortunately we didn't get to have a long chat because he knew that I basically knew thats what it was already. I have a cousin in NY that has Crohn's disease as well. Today I am feeling completely depressed. I'm 23 years old I have Crohn's and scoliosis. Speaking of that I had a bad flare up of the scoliosis on sunday that still hasn't eased. I have three children since birth control failed me not once but twice! Yes twice! I noticed after each birth and during the pregnancies that my pain, vomitting and diahrea got worse each time. I feel completely lost. My husband doesn't really seem to understand. I live over 500 miles away from all of my family and I don't have any friends here in PA. I have no help with my kids when I get my real bad flare ups. The doctor has started me out on Pentasa 500 mg 3 times a day and after a week I must increase it to 2 tablets three times a day. He also has me on Prednisone 60 mg which I must decrease every week until i'm down to like 2.5 mgs. I'm also taking Ranitidine 1 tablet twice daily at 300mg. My General practitioner who is treating the scoliosis gave me Darvocet for my scoliosis pain but I can't even take it because of my kids. Basically all I got to talk to the Gastroenterologist about was that my crohns was severe and the meds. I have to go back to see him on the 24th. I feel like a complete basket case. I really want to move back to NY to be near my family but my husband didn't like it up there and doesn't want to move back. I feel just so extremely depressed. Thanks for listening to my vent. If you have any suggests or comments I appreciate all the help and advice. I can't seem to get the Low residue diet down ....i can't find anything that doesn't hurt.
Oh and the doctor said something about there was an ulcer in the part where my crohns is which is in the ileum. He did a biopsy but I haven't heard anything more about that yet.
Stressed out in Pennsylvania!
Amandaa

smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 1/15/2008 11:21 AM (GMT -7)   
Hi Amanda! Welcome to the forum. I am also new to this website and have found everyone very helpful and caring. I am so sorry you are going thru such a rough time. Being away from your family must be extremely difficult. I am also a mother of two young boys and know how hard it is to try and function when you are feeling so awful. Having help is soo important. I too have struggled with crohn's symptoms since I was 19 and now I am 40. I was only officially diagnosed over a year ago. I am also on Pentasa and have had good results with this med. I cannot comment on Prednisone since I have not had to take this. But do know that it will get better and you just have to take each day as it comes. Your diet right now is very important, so try to stick with a few simple things that agree with you, my favorite is soup. I have to stay away from caffeine, garlic, raw fruits and veggies, carb. drinks and alcohol. Everyone is so different unfortunately when it comes to what they can and cannot eat. It would be so much easier if there was a specific crohn's diet that worked for everyone. Finding the right doctor that you can talk to and that will take the time is very important. See also if your GP can refer you to see a dietician, they can sometimes be quite helpful. Keep us posted how you are and will be thinking of you. :)

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 1/15/2008 11:21 AM (GMT -7)   
Amanda,

Gosh, just reading your post stressed me out and I am not an IBDer, my Daughter (age 25, diagnosed at age 17) is. She also has scoliosis and early onset of chronic arthritis from injuries suffered in a serious accident when she was 16, also suffers from migraines.

I can't agree more that you need to get back to NY where family and friends are for support especially trying to manage 3 kids while not feeling well. My heart really goes out to you. IBDers truly need all the help and support they can get especially during their unhealthy times. Stress is so evil and unkind to IBDers. Being around people who can help ease some of the stress is as therapeutic as the meds you have to take.

I am going to hope that Pentasa/Predisone will help. Not to scare you and all patients are not the same in their response to meds, but my Daughter did 4 years on Pentasa and rounds of Prednisone and basically got nowhere on it. Don't get me wrong, it could be beneficial to you, but if you don't feel you are getting the relief you need in a reasonable length of time, then PLEASE scream for something else. My Daughter's miracle meds turned out to be Remicade, Imuran and Asacol. She has been in remission for 4 years so far thanks to these meds.

Sending good thoughts that you will feel better soon. This is a great place to unload some of your stress, fear and get a ton of good advice and support.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/15/2008 11:27 AM (GMT -7)   
First off welcome to Healingwell. Sorry for the reason you have to be here. First off it looks like your doc is getting you on the right meds to start. Hopefully the Prednisone will kick in soon and you will start to feel better. One thing I want to tell you, this is not a death sentence. I really think you and your husband should go to CCFA.org site and read up on Crohns. It really is hard for our spouses sometimes to understand how bad we really feel. And maybe by educating him you can help him to be more understanding of your life now. And maybe he will see that you really need help with the kids. Your pregnancy descriptions sound like many of the ladies on this board, so you aren't alone there. The hormones get all out of whack and really mess us up. I have had Crohns for over 32 years and I live on a low residue diet. Unfortunately we are all so individual and one food might bother one person and not another. Try to keep a food diary of what agrees with you and what doesn't. For now I would try eating broths, white rice, jello and things like that till your Prednisone kicks in. I would also recommend a referral to a Rheumatologist. Many with Crohns suffer with joint related problems also, and a Rheumy will help you to get your joint pain under control. Also, many of us suffer with depression because of the darn disease, and do take meds to help there too. Please keep coming here and venting. Thats what we're here for.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/15/2008 11:44 AM (GMT -7)   
AmandaH, welcome to the forum! It sure sounds like you're having a rough time right now. I hope you can get lots of support here and from friends and family.

I am new to Crohn's as my son was diagnosed last June, but I'm not new to scoliosis! I have it too, and it's pretty severe. Feel free to email me personally if you ever want to discuss it--just click on my name. Unfortunately, due to the nature of scoliosis, it nearly always progresses during pregnancies, so it's understandable you are having issues with it.sad

I can only imagine what having both scoliosis and Crohn's must be like. You definitely need support! How about a local church or mom's day out kind of program? Please take time for yourself; it's the only way to handle either one of your diseases, let alone both!!!

My son and I have often discussed the fact that his disease, like mine, are basically "invisible" to the vast majority of people. By that I mean that no one really knows you have Crohn's or scoliosis unless you tell them. (I disguise my disfigured back with years of experience--I'm very self conscious about it. Even some of my closest friends don't know.) Unfortunately, unless people see outward signs a physical problem, they assume you are lazy or at the very least unmotivated if you aren't doing every thing THEY think you should. It is tough because both these diseases can really zap your energy.

With what little I know a little about prednisone I know it causes mood swings and muscle weakness--just to name a few. With scoliosis, the muscle weakness is bound to cause more than the usual problems. You are probably experiencing muscle spasms that are unreal. I remember those when my kids were little and wondering how I would pick them up when my back was screaming. And the mood swings from the prednisone--that may be the reason you are feeling so depressed. Please seek out help for yourself in some form or another. Maybe your mom or some family member could come stay with you for a while? Just a thought.

Flaxseed oil helped my back issues immensely and thankfully, it also has benefit for Crohn's. You might want to look into it. There are also lots of other beneficial things you can do supplement-wise for Crohn's, so stick around and read read read and post more questions! That's why we're here!

Oh! Also, if you've been taking ibuprophen (Advil) for your back pain (I have to on occasion), you will need to find an alternative. Hopefully someone will jump in here and explain why, but ibuprophen is NOT recommended for folks with Crohn's.

Best wishes sent your way! :-)
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


there's Hope
Regular Member


Date Joined Nov 2006
Total Posts : 145
   Posted 1/15/2008 12:10 PM (GMT -7)   
Ibuprofen is in a group called NSAIDs and we are not allowed any medication that is an NSAID because it irritates the digestive tract. I accidentally took one and I found out the hard way that it was a very bad idea.
Anyways I wanted to welcome you to the healingwell forum, there are so many people here that can relate and give great advice. I would be lost without this place! I am so sorry for all you are going through, you really need a close friend or family member to come help you out while you are going through so much. Is there anyone you can have come for a visit to help you out??
I have been on Prednisone and it made me feel crazy, it causes mood swings, insomnia I mean the side effects are abundant. I started going to therapy just to talk about it all and it has really helped me to not only accept the disease and live with it, but to ENJOY living with it. I was on Pred for 19months so it was really taking a toll on me. You want to start taking a calcium supplement to protect your bones. When you take Prednisone your body processes salt differently and you may get bloated and get what they call a "moon face." I know it is hard to find food that you can enjoy that don't hurt you. I pureed everything I could think of, ate a lot of baby food and italian ices. The baby food desserts are so yummy and they have snacks that dissolve in your mouth so you can eat those when you get a sweet craving. I would make soup and blend it up. I ended up getting a low residue cookbook to get better ideas.
I know right now it feels overwhelming that you have to deal with all of this, try to take it one day at a time. We are always here when you need to vent and will try to help in whatever ways we can.
I would def suggest looking around online at places like CCFA.org like Nanners suggested. Knowledge is power and the more you know and understand your disease the more control you have over it.
Sending hugs!! Take care!
26 year old female. Dx with UC in June 2003. Flare up in June 2006 led to CD dx.
Current Meds: Remicade, Asacol, Bentyl, Phenergan, Reglan, Ultram, Celexa and Seaonale, Fish Oil, Lacto and a Multi Vitamin

"There's Hope. It doesn't cost a thing to smile; You don't have to pay to laugh; You better thank God for that!"


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 1/15/2008 2:20 PM (GMT -7)   
Welcome! Sorry you are finding us under these circumstances though. What part of PA are you in? I'm in the Pittsburgh area and see a dr at UPMC Presby. My advice also is to learn all you can, and if possible get your husband to learn too. Better yet get him to talk to another spouse of a cd patient. Beleive it or not, I was diagnosed in 1982 and until my last big flare that started in 2003, my husband wasn't much help. Then he told someone at work about my CD, and the next thing you know he found a bunch of other guys to talk to. It really increased his understanding of what I was going through.

Anyway, welcome again and feel free to vent any time you need to --- we're great listeners.

Lorraine
 


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 2:28 PM (GMT -7)   
Thank you all so much I really appreciate all of the support. I live in the State College area. I have been reading as much as I can online. The library here had 1 book...that was it on it or thats all I could find and the lady I asked said that was it so I was like wow. I really wish my husband would try to listen....He seems that it would be cured if i would take this vitamin called glutamine cuz he read about it in a natural health magazine they said it cured crohns disease.. I tried to explain to him that if it cured it i'm sure hundreds of people would be saying how great it was by now and not suffering. He was pretty snappy with me yesterday and he is never like that. Its just adding more stress. sad

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/15/2008 3:03 PM (GMT -7)   
Amanda, I'm sorry I'm late but I did want to welcome u. Tell your husband that there currently is NO cure for crohns disease. There are diets and medications that cause people to have less symptoms, go into remission or have no symptoms at all BUT this varies for everyone. Some people are on the maker's diet, the scd diet, natural stuff, a cocktail of meds. Crohns symptoms and remissions are very individual.
As u read these posts (and I do suggest u go back n2 the archives) u will readthings that u want to try or ask your doc about. There are meds that people here have used that had never even b suggested by my docs. This place will make u feel empowered when u go to ur docs bc ull kno what to ask and 2 suggest. This place has been a Godsend!
My prayers are with you! Stay with us, this place is great! And ask away! These great folks never get tired of helping?!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/15/2008 3:35 PM (GMT -7)   
I just also wanted to welcome you. I was also 23 when I was diagnosed, even though I had shown signs as early as 13. I only had one child at the time but I do understand how difficult it can be to feel rotten and still need to take care of a small child. On my worst days, we would stay home, I would rest on the couch and my daughter would play beside me or I would read to her, or we would watch Sesame Street. You get the picture. Maybe you have a nice neighbor who could help out a bit, or a youngish mothers helper who could come over after school for a few extra bucks. As someone else suggested, do you have any family member who could come stay with you for a little bit until you get a handle on things and your meds kick in?

I would suggest going to Amazon for some books. You can get used copies for not a lot of money. I also would suggest a fabulous cookbook. "Cooking Well for the Unwell" by Eileen Behan (I think that is the spelling of her last name, I'm not near my copy). She is a registered Dietitian, she has sections in her book for all the different stages you may encounter with this disease, but also for all kinds of illness. It really helped me to open up my mind to other possibilities when I get stuck in a rut of clear liquids. I would also suggest "The First Year" for Crohn's disease by Jill Sklar. It really takes you day by day through all the emotions, all the drug options, all the different tests and preps, basically it has lots of answers to questions you haven't even thought of yet.

But most of all you are doing the most important thing you can do. You are educating yourself. You need to be your own advocate and knowledge is your best weapon. Please come here and ask all the questions you need to. There are no stupid or embarrassing questions here, we talk about everything. So ask away, and when you need to vent, or if you need a shoulder to cry on, we are here for that too.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


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


stirling_dad
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 1/15/2008 3:44 PM (GMT -7)   
Amandaa,

Based upon your current situation, I would recommend you try to join
the Low Dose Naltrexone trial with Dr. Jill Smith at Penn State Medical
School in Hershey, PA. She is a world class doctor and you may find
significant relief from the LDN. I don't know if you would be willing
to drive to Hershey, PA but other members of this forum commute
over 4 hours for this trial. The downside is that you might get a placebo
but I believe that you will get the actual medication after a fixed
period of time (it is a double blind trial).

You can call Sandra Bingaman at 717-531-8108 to see if you qualify. I believe
you will qualify.

See the following websites for more details.

http://www.lowdosenaltrexone.org/

http://www.hmc.psu.edu/colorectal/research/naltrexone.htm

Good luck.

John

fistulagal
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/15/2008 4:16 PM (GMT -7)   
I am so sorry for what you are going through. I was diagnosed 9 years ago I am now 33. I have to tell you when reading when of your responses you said you lived in State College which I could not believe because I had this Dr. when I was diagnosed who I adored. He did everything possible for me and when he didn't have the answers he sent me to a specialist in Manhattan who did. I was devistated when he took a job in State College ( I am in CT). I often joke with my friends that I am going on a road trip to schedule an appointment to see him when I am feeling real lousy. Could it be the same Dr. that you are seeing? Dr. Lichtenstein???? If it is please let me know and if it is please know that you are in good hands if it is him. Hopefully your meds will get you feeling better soon and you can try and have a normal day to day life. I know that sometimes I think is that possible? I know that I am thankful to have found this sight and reading all the posts and knowing I am not alone in this.
 
Fistula Gal

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/15/2008 4:18 PM (GMT -7)   

Amandaa,

Hello and welcome to Healing Well and the Crohn's Disease Forum. You have received some really great welcomes and info above.  Also on your right you will see links to our own resources here at Healing Well.

You may want to look at this site for a support group that meets in your area.  I know we are a small town but we have a group right in town and it is run by our GI physician which is a real plus.

http://www.ccfa.org/chapters/?LMI=7

Again welcome and keep posting, we are here for you. Take care of you.


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 6:09 PM (GMT -7)   
fistulagal said...
I am so sorry for what you are going through. I was diagnosed 9 years ago I am now 33. I have to tell you when reading when of your responses you said you lived in State College which I could not believe because I had this Dr. when I was diagnosed who I adored. He did everything possible for me and when he didn't have the answers he sent me to a specialist in Manhattan who did. I was devistated when he took a job in State College ( I am in CT). I often joke with my friends that I am going on a road trip to schedule an appointment to see him when I am feeling real lousy. Could it be the same Dr. that you are seeing? Dr. Lichtenstein???? If it is please let me know and if it is please know that you are in good hands if it is him. Hopefully your meds will get you feeling better soon and you can try and have a normal day to day life. I know that sometimes I think is that possible? I know that I am thankful to have found this sight and reading all the posts and knowing I am not alone in this.
 
Fistula Gal
I actually see Dr. Mandetta. The first person I saw was  physicians assistant. I told him I thought it was Crohns and he said he wasn't sure but immediately after having the upper gi and small bowel study they had me get in immediately well as soon as possible after the prep for the colonoscopy. Dr. Mandetta pretty much could tell before I even had the colonoscopy. As soon as I had that done it sealed the deal. He also did a biopsy. I go on the 24th for our first actual visit outside of the procedure. I just don't know what to ask or where to even start.

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 6:12 PM (GMT -7)   
stirling_dad said...
Amandaa,

Based upon your current situation, I would recommend you try to join
the Low Dose Naltrexone trial with Dr. Jill Smith at Penn State Medical
School in Hershey, PA. She is a world class doctor and you may find
significant relief from the LDN. I don't know if you would be willing
to drive to Hershey, PA but other members of this forum commute
over 4 hours for this trial. The downside is that you might get a placebo
but I believe that you will get the actual medication after a fixed
period of time (it is a double blind trial).

You can call Sandra Bingaman at 717-531-8108 to see if you qualify. I believe
you will qualify.

See the following websites for more details.

http://www.lowdosenaltrexone.org/

http://www.hmc.psu.edu/colorectal/research/naltrexone.htm

Good luck.

John
 
I would drive to the moon if I could feel better!! Sheesh I would walk for that matter! lol I feel a little bit better mentally after just sitting and crying.

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 6:19 PM (GMT -7)   
Does anyone have any suggestions or questions that I should ask my doctor...at this point in time all I really asked was how severe my crohns was and he answered with "its pretty severe Amanda." I guess I was sort of in shock..I always suspected I just never realized how bad or serious it could be. I'm sort of shocked and scared now. But its not making the pain any worse right by knowing for sure.

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/15/2008 6:30 PM (GMT -7)   
Amanda,
I am so sorry to hear about your recent diagnosis, I know how shocking it can be. I was diagnosed almost 2 years ago and it freaked me out cuz I didn't know what it was until I did some research on my own. My GI called me on the phone at work and told me that I have "significant CD". On one hand I was relieved to finally put a name to this mystery illness but on the other hand was baffled and scared not knowing what my next step was. I researched and read everything I could on CD, which made me feel better because I knew what I was dealing with then. This disease is very, very frustrating in many different ways...as you know, it affects your total quality of life. I have never taken pain meds until about 6 months ago and I asked my GI for something to help, he prescribed me 5mg hydrocodone, very low dosage but makes a world of difference when I'm in pain, especially at work.
Anyway, I hope that you get some answers from you GI at your next appt. Know that we are all here, just let us know if we can help in any way.
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)

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