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Questions about Crohn's disease

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Crohn's Disease
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Posted 5/1/2012 3:53 PM (GMT 0)
Good Morning Emily,

I too do not mind that you use my story and I will try and keep it short.

First of all I am an almost 61 year old female who had terrible constipation most of my life. I joke to some people that I am that only person who goes to Indonesia and does NOT get diarrhea!(2000)

I noticed my symtoms for Crohn's at the end of 2006 and when I mentioned it to my GP she immediately sent me to a GI. I somewhat knew I had the disease because I had a good friend who had had it for years, and is now living with a colostomy bag.

I was finally diagnosed in 2007 after having a CT Scan and surgery followed right after that.  I had 12 inches of small intestine removed.  The night before I was to be discharged I began having severe pressure pains in my stomach.  The nurses kept dismissing it as excitement about going home. After inserting an NG tube I apparently went Code Blue with my incision did not hold and I got sepsis.

I woke up 3 days later in ICU with an ileostomy and chest infection, and a collapsed lung.

Needless to say I remained in the hospital for another 30 days.

8 months later I had my ileostomy reversed and no surgeries since then, but my Crohn's lets me know every day that it is not going away. 

This disease pretty much rules my life, I don't make any appointment until the afternoon so that I can use the entire morning to go back in forth to the bathroom.

I cannot leave the house without taking imodium as I have problems with bowel incontinence.

I just split up with my boyfriend of 16 years and the thought of meeting someone new and having them understand this disease is difficult especially the embarassment factor.

One of my biggest worries is that my 2 little grandaughters could inherit my disease.

I dealt with the diagnosis pretty well since I had already been informed and watched my friend go through alot.

I took birth control for 28 years and smoked for 35 years (Quit the day I had my first resection) and I don't drink.

Hope some of my info helps Emily and good luck in your endeavour.

Post Edited (cleanfreak) : 5/1/2012 10:56:51 AM (GMT-6)

Posted 5/1/2012 4:24 PM (GMT 0)
Yes Rosebud, you can certainly use my posts for your project...the more people that know about this dreaded disease the better understanding hopefully people will have.
Posted 5/1/2012 9:18 PM (GMT 0)
Thank you cleanfreak, your post helped alot actually :) I really appreciate everyone's help who posted. I hadn't asked anyone else about how it has affected their relationships with others, and what you mentioned about your grandchildren, I was thinking of that in the back of my mind because I had read before that Crohn's may be genetic, but I thought it may be too personal for me to ask those with children if their children showed any of the symptoms of crohn's. No person wants to see a loved one suffer especially if you've experienced it yourself, the only positive though is that if a family member did develop it someday, you know from experience what it's like and may be able to see the symptoms in them so that they get tested sooner as well as being able to provide encouragement and support. I pray that your granddaughters remain healthy and I hope my post hasn't upset you in any way.
Posted 5/1/2012 9:49 PM (GMT 0)
You did not upset me at all, any information that we can pass on to a family member would be more helpful that reading about it.

I also suffer from scoliosis and between looking at their spines and asking questions when they have diarrhea I have to admit I keep a close eye on them.

They are 2 and 7 and the one thing that weighs heavily on my mind is the guilt I would feel if they inherit either one of these diseases. 

I am adoped and I have tried to get my medical records from a different province and I am having a hard time, but hopefully I can get them soon.

Glad I could help Emily, take care.

Posted 5/1/2012 10:31 PM (GMT 0)
Hi again cleanfreak. about the scoliosis, I have it as well and I understand what you feel about the guilt and worry of them inheriting it as well as them inheriting Crohn's, but if they do inherit it I want you to know it's not your fault. You are doing the right thing by keeping an eye on them so that if they do show symptoms they can be diagnosed sooner rather than later. Hang in there :)

Everyone, you have been so helpful and I thank you so much for all of your contributions and patience with me. Tonight is the night that I will be submitting the information I have received, but I will come back to this thread to give you all an update on how it went if you would like to receive one. Thank you again and I'll be keeping you all in my prayers.

-Emily
Posted 5/1/2012 10:35 PM (GMT 0)
Oh, I forgot to say this, but if you would like to keep posting here even though my project is completed, I would like to know how things are going for you all in terms of your health or if you would like to vent I'm here to listen.
Posted 5/2/2012 4:38 PM (GMT 0)
Genetics are a huge thing....I have a sister with scoliosis, none of the rest of us have it...my mom had UC and I have CD however, my CD was triggered BEFORE my mom's UC was so although she didn't get sick with her IBD until AFTER I did, I still got it from her...with IBD it's often just a matter of IBD being triggered. My other siblings could very well be predisoposed to get an IBD as well, but it has to be triggered for them to actually become sick...I worry for my 2 kids as well, my daughter has some IBS issues that can be quite debilitating for her...touching wood my son will be IBD/IBS free in his life time.
Posted 5/2/2012 8:08 PM (GMT 0)
Are there any preventative measures a person can take to reduce their chances of developing Crohn's or IBD? I know that with some inherited diseases you are more prone to the disease but it's not a 100% chance that you'll develop it.
Posted 5/3/2012 12:45 AM (GMT 0)
In a nutshell, no...smoking (including second-hand smoke) is the only known trigger specifically for crohn's disease according to researchers, however, that doesn't necessarily mean that it's the trigger for every crohnie (much more needs to be learned about how triggers turn IBD on) yet with smoking it seems to keep UC at bay and since no one can possibly know which IBD they may get, there's no way to pinpoint how to avoid getting either IBD (UC or CD).
Posted 5/6/2012 9:21 AM (GMT 0)
I was diagnosed with CD in 1990 and had no idea what CD was until I ran into a lady in the hospital that had the same thing. She told me that she had been in the hospital "no less than 30 times"! I went home TOTALLY DEPRESSED! I then had my Gastroenterologist tell me that he "wasn't going to put me on prednisone!" I had NO IDEA what he was talking about for I had never heard of the stuff before. He put me on Sulfalazine which made me feel like I was going to die! I was in his office with my huge bottle of pills and it took me A LOT of self control from NOT throwing the pills around the room. I had NEVER been on soooo many pills in all my life!
I then moved back to my parents house for I couldn't work anymore. I had a very good job when I was healthy!!! Now I am VERY POOR! I DON't go on vacations nor trips because of constant Diahrrea and no money, but I get to hear whenever my Doctor is going on a vacation!
I changed Doctors and had surgery in 1996 which was a horrific nightmare. I say that because it is a HUGE shock to the system to be cut right down the front of you. I woke up and the surgeon came and said, "I don't know how you walked around like that for you were a mess inside!" I said, "Well I had to...I had no other choice!"

I've been on Pentasa, Asacol, 6MP, Metrozonidal, Citro, Prednisone, Humira and all the others. What bothers me is the refusal by my regular Doctor to let me try some Low Dose Naltrexone! There are reports that it has helped people like me and I was curious to try it! He said, "No because it is an off label useage!"

So to sum up my experiences ....The Doctors THINK that they are helping, but really they are NOT helping patients like me. They also have NO IDEA about the actual Nutritional needs of people like me and are really just CLUELESS! After all these years of suffering they don't really care, because if they did they would be more in my corner and do whatever it takes to help me even if something is an off label useage! I guess they care too much about their reputations, their paycheques, or keeping the status quo than actually helping someone! I have now a very jaded view of the medical establishment and the Drug Companies too.
I think what about ME who is SUFFERING CONTINOUSLY? What about some Alternative Approaches and different ways of doing things than the regular pushing of drugs and surgery. I don't want a "Trial Drug" either for I've acquired MS like symptoms from the Humira I was on 2 years ago, and," No I don't want anymore Prednisone for I have Osteopenia now too"! I just feel JACKED AROUND and ABUSED and so much so that I would rather just stay at home if I'm ill and pray that I DIE instead of doing the STUPID DANCE anymore! So there you have it- that's my feelings about it all!
Posted 5/9/2012 2:52 AM (GMT 0)
Hi Kate, thank you for sharing your story. I'm sorry to hear that the doctors treated you like that :(

about the off label usage, unfortunately there's more than goes into it than them not wanting to prescribe it. Occasionally doctors will prescribe medications for off label use, but if they promote a medication or encourage patients to take it for a condition not pre-approved for that use by the FDA, they can lose their license or possibly cause harm to you by giving you the medicine. Some doctors do care about their patients, but I know many of them may seem like they don't listen to what you're saying. Don't give up on your health, Kate. Crohn's treatments can vary from person to person, what worked for one person may not work exactly the same for you, but there are alternative treatments available besides the pills, or ones you could use in combination with pills to gradually reduce the amount of medicine you're taking. Stereofidelic89 and pb4 from who posted earlier on this thread both use natural supplements in combination or as an alternative to the prescription drugs and may be able to offer you some advice about what has worked for them and what hasn't. I hope that helps.
Posted 5/9/2012 3:16 AM (GMT 0)
Yes Emily, you can use my posts also.
Posted 5/9/2012 6:28 PM (GMT 0)
powerofattorney, those are 2 things that I do and have been doing for quite a few yrs now since altering my diet...still no full remission...as usual, what works for some, doesn't work for all unfortunately.
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