new-wife of-34yrs-stageIII-misdiagnosed as crohns

Karmar

Not alone
Hi and welcome to an absolute wonderfull site. My name is Karen and am waiting on a dx. My colonoscopy is the 29th. All the bloggers here are an excellent source of info. Your story struck a cord with me as you see I have a sister and son with the chrons.Also My father and aunt passed away from colon cancer. I do know that Chrohns can lead to cancer.So I have both diases in my family-Lucky me(haha). At least with Cancer there is treatments and caught early enough a chance for a long life. My father was given 6 months after his Dx and lived 7 full years and died from a massive stroke due to a blockage in his corotied artiery in his neck.Unfortunatly my Aunt died at 26 right after the birth of her 3 child. When they discovered her cancer it was compltley through her body. We are talking 40 years ago to.
My sister did not get diagnosed with chrohns untill she was in her 30's. But she does very well with it now. She is nearing her 50th birthday.My son is 26 and it took me 3 years to get a dx for him. Most doctors sent him home saying to add more fiber to his diet. Untill he got so sick and ended up in the hospital for 7 days. They ruled out everything untill the 6th day decided to do a colonoscopy. Low and behold Chrohns. I creid for him.It frustrates me when I have told countless doctors of our family History- Thank god my new GI doc understood especially when I told Him my cousin on my fathers side was just dx qith stage 4 colon cancer at age 42-with it already in her liver and lungs-Plus that fact that I have 2 brothers and 1 sister test positive for pre cancerous polyps.My biggest fear is that I have all the symptoms of a mayjor problem in the colon along with the extreme pain-Afraid that it may be well advanced-Or my other fear is that there is nothing there and no explination to why I am so sick. But I thank God everyday for this wonderfull site. It Brightens my day every day as I wait for the meds to kick in so I can function for part of the day.

Good luck and Keep the faith-Truley believe God Gives us only what he Knows we can handle. Your husband is very lucky to have a wonderfull person like you in his life.
Karen

kmygil

Welcome!
Hi Emrose. Welcome to the best group of people you will ever encounter. They saved my sanity! I'm so sorry to hear of your husband's diagnosis, but this is the place to come for any and all information, not to mention some great humor that lifts you up when you need a big boost! Bad enough that you were immersed in Crohn's, but then to hear "cancer"... Like Kathi says, they are two different animals. Here we aim for REMOVAL of disease. Crohn's is a matter of controlling the disease.

As a caregiver, you will have a special place in heaven. Know that we are all sending positive energy your way and keeping you both in our prayers.

Hugs,
Kirsten

emrose

lisa42 said:

Hi,
Just a thought on
Hi,
Just a thought on wanting to try for a baby... could it be possible for you to even possibly get pregnant in the next few weeks before your hubby starts chemo? Another thought is maybe have your husband make a deposit of sperm (not sure exactly how that works or where such things are stored, but I know I've heard of this being done so that you could be implanted with his sperm). I don't know if men's fertility is equally affected, but I myself became sterile right away. I was 41 years old and had my period the same day as my first chemo treatment- well that was the last period I ever had (it's now been a year and a half). I was told the oxaliplatin definitely affects fertility. I'm not positive, however, if that's the same for men. I bet, in spite of what the oncologist said, that there is more information to be found about this topic. I'd google it and definitely call around and ask this question of other cancer centers. Best wishes to you and your husband. He can and will win this fight!!
Best wishes and blessings to you both-
Lisa

fertility
thanks for sharing your thoughts on this Lisa. I'm starting to think the same things. 2 options: get pregnant NOW (if only it were that easy) or bank some sperm just incase. While I do not know if chemo affects men the same as women, I do know that freezing sperm is a heck of a lot easier than freezing eggs so we will be taking advantage this. You know, we've been talking about having a baby for some time now but there was just one reason after another to wait a little longer and we finally said we'd start trying in January, after his "crohns" settled down! Well, we are where we are and we just have to stay positive! (although sometimes I really kick myself for not doing things differently! Just can't help it)

Thanks again :-)
Laura

emrose

Karmar said:

Not alone
Hi and welcome to an absolute wonderfull site. My name is Karen and am waiting on a dx. My colonoscopy is the 29th. All the bloggers here are an excellent source of info. Your story struck a cord with me as you see I have a sister and son with the chrons.Also My father and aunt passed away from colon cancer. I do know that Chrohns can lead to cancer.So I have both diases in my family-Lucky me(haha). At least with Cancer there is treatments and caught early enough a chance for a long life. My father was given 6 months after his Dx and lived 7 full years and died from a massive stroke due to a blockage in his corotied artiery in his neck.Unfortunatly my Aunt died at 26 right after the birth of her 3 child. When they discovered her cancer it was compltley through her body. We are talking 40 years ago to.
My sister did not get diagnosed with chrohns untill she was in her 30's. But she does very well with it now. She is nearing her 50th birthday.My son is 26 and it took me 3 years to get a dx for him. Most doctors sent him home saying to add more fiber to his diet. Untill he got so sick and ended up in the hospital for 7 days. They ruled out everything untill the 6th day decided to do a colonoscopy. Low and behold Chrohns. I creid for him.It frustrates me when I have told countless doctors of our family History- Thank god my new GI doc understood especially when I told Him my cousin on my fathers side was just dx qith stage 4 colon cancer at age 42-with it already in her liver and lungs-Plus that fact that I have 2 brothers and 1 sister test positive for pre cancerous polyps.My biggest fear is that I have all the symptoms of a mayjor problem in the colon along with the extreme pain-Afraid that it may be well advanced-Or my other fear is that there is nothing there and no explination to why I am so sick. But I thank God everyday for this wonderfull site. It Brightens my day every day as I wait for the meds to kick in so I can function for part of the day.

Good luck and Keep the faith-Truley believe God Gives us only what he Knows we can handle. Your husband is very lucky to have a wonderfull person like you in his life.
Karen

Hope for your son
hello and thanks for sharing your story Karen. I wish your son the best of luck in his battle with crohns. I would recommend that he try taking a probiotic supplement (natures way makes some good ones) because they seem to work wonders. I hope he finds a way to control his symptoms and have a great quality of life. There is a forum called healingwell that was a wonderful source of information and hope for me.

Also, I wish you the best of luck with your diagnosis!! Whatever you discover, it will just be so good to know what you are dealing with so you can treat it and move on with your life!

You are right, this place is wonderful! My friends and family are great, but they don't truly understand the way folks here do!

emrose

kmygil said:

Welcome!
Hi Emrose. Welcome to the best group of people you will ever encounter. They saved my sanity! I'm so sorry to hear of your husband's diagnosis, but this is the place to come for any and all information, not to mention some great humor that lifts you up when you need a big boost! Bad enough that you were immersed in Crohn's, but then to hear "cancer"... Like Kathi says, they are two different animals. Here we aim for REMOVAL of disease. Crohn's is a matter of controlling the disease.

As a caregiver, you will have a special place in heaven. Know that we are all sending positive energy your way and keeping you both in our prayers.

Hugs,
Kirsten

thank you kerstin!
your positive energy and prayers mean ALOT!!! And - hey, I'm all for REMOVAL of disease thank you very much!!

emrose

CherylHutch said:

Keeping tabs
Good going, Laura!! That's exactly what he needs... a loving spouse who will be there to keep an eye on things but will also let him do what he feels he can do, without making judgments. It's amazing how many people seem to feel they have to tell you what you should and shouldn't be doing. I don't know how many people told me, "You are crazy... you should not be down at the theatre, outside, amongst all those people... you don't know what germs they may have." So, what do they think I should do, hole myself up in my apartment for 8 months and not see anyone or do anything?? Because I was on chemo for 8 months in those 2 week cycles... and as we are all aware, the immune system really takes a beating from the chemo. But, in my case, I was doing something I loved to do, with friends who I loved and who supported me 100%... so I thrived in that environment. I think the benefits of keeping myself busy doing something I loved far outweighed the risks of what I might have been exposed to. Of course, I do have the "luxury"(?) of having long term disability insurance, so it's not like I have to work. My job nowadays is to focus on my health, not on what others think I should be doing.

Now, as for the fertility issue. That is not an issue with me since I had an emergency hysterectomy 8 years ago, so I have never asked that question or paid too much attention to it. I think that should be at the top of your questions to ask the oncologist and find out what can/should be done if this is a problem... before the chemo gets started.

Now I know that you both are going to be worried/nervous until he starts his chemo and it's human nature to expect the worst. But, I think you will find the first cycles go fairly easily. Chemo is an "accumulative" process, as is radiation. By that I mean that every 2 weeks you are adding more chemo to your system. That one week "rest" between chemo sessions is not enough time for the chemo to completely leave your body, so the next session you are adding chemo on top of what is left from the previous session... and so on. By the end of your 12 cycles, the fatigue/tireds/lethargy is going to be much more noticeable than the first couple of sessions. But if you go into this knowing that, then it is easier to handle. For me, as long as I knew what to expect, I could deal with it pretty easily. But if something came along that I was not expecting, then I would get anxious... until it was explained to me that this was a common occurence.

But hey, you both already have an advantage... you found this forum BEFORE hubby starts his chemo. So you know you can come here and ask if anyone else has experienced whatever hubby is feeling. Chances are, you will get a whole bunch of people all saying, "No problem, that's totally normal"

Huggggs,

Cheryl

thank you thank you thank you
Cheryl - you are AMAZING!! Here you are, dealing with your own struggles and you still take the time to share advice, suggestions, and encouragement to a newbie like me!! It means the world to me and I really can't thank you enough! I read every word and will use ALL the advice I get here to guide us in this journey! I have no doubt I will be here often with questions and updates!!

~Laura

2bhealed

Misdiagnosed
I can relate to being misdiagnosed. So was my sister who was only 29 at dx. I was 39. We both had had certain symptoms for years. but that's another story.

Want I want to tell you is that I privately emailed you on here so keep a lookout for it.

Welcome to the boards!

peace, emily

PS. FOR THOSE WITH CROHNS--AN EXCELLENT BOOK IS THE MAKER'S DIET by Jordan Rubin. He cured his Crohns and became a doctor.