Newly diagnosed and trying to cope

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tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/11/2010 4:27 PM (GMT -7)   
I am 38 yrs old and was just diagnosed 2 weeks ago Wednesday with Crohns disease. The weird thing is it did not hit me in the drs office that I was now dealing with a lifelong chronic disease. I am so happy to find these support boards to be able to discuss things. My family is wonderful and so supportive but I think my mom is more scared than me and everytime I have a cramp,bowel movement..etc..she gets very nervous so I do not want to discuss fears I am having with her. I was just diagnosed but fear I have had crohns all along  for the last 8 years. The first time my bowel movements changed I went to see the dr but I presented with no chronc pain just cramping right before a bowel movement and then multiple bowel movements a day. I had a stool check done and no blood was present and since my symptoms were so mild I was told I had IBS. I asked about crohns and ulcerative colitis and was told that y symptoms were too mild for that. I now know there are a lot of drs that do not understand that there can be mild to severe cases. I went about my life and suprisingly after being told I was not dying my symptoms improved. I was able to live a normal active life for 8 years. I had flare ups every so often that I now recognize as a crohns flare when we thought it was IBS. I would begin to get god awful please god kill me now cramping that would start in the early evening and go on for as long as 12 hours. Vomitting,chills also accompanied this. By morning I would have diahrrea and would begin to feel better. When I mentioned this to the dr I was told it was an IBS flare. Last October I began having a cronic pain in my gut right above my belly button. I was stubborn,thought it would go away on its own and of course it did not. Finally in January I could stand it no more and went to see my dr (a new one from the previous genius) and I hit the jackpot because he had a nurse practitioner whose husband has crohns so she knew the signs. I was immediately referred to a gastro dr (one who specializes in crohns thank goodness) and thus began my journey into this lovely disease. I have had a colonoscopy, blood work to include and immunoassay and immunofluorescent study, and a barium swallow(ick I hated it..I actually preferred the colonoscopy!!) I am trying to look on the positive. I have great doctors who listen to me and I was diagnosed relatively easy. From what I understand it can take some people a long time to be diagnosed. I have been on Lialda for the two weeks. I am beginning to see some difference in my treatment and I have to constantly remind myself that just because I feel good one day I cannot eat whatever I want. Yeah, the arbys today....big mistake. It is so nice to have a board where you can talk openly about your symptoms and issues and not be embarrassed. It is also nice to have people that understand the ups and downs of this disease. I am so freaked out right now to think I have a chonic lifelong (barring a cure) condition. I find it easier to say each time I tell someone though. Luckily I was told I have a mild case and my only issue right now is the weight loss and the inflammation in the colon. No other damage thank goodness. I look forward to communicating with people on the board helping to cheer them on and hopefully have them cheer me on. Has anyone read any good books on crohns that can recommend? I would be intrested in reading them. I want to take charge of this and not be a passive bystander in my treatment.

Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/11/2010 5:01 PM (GMT -7)   
Hi, I'm right there with ya. It's been quite a month for me, x-rays, ct scans (and I'm one to not like radiation!), stool samples, colonoscopy/endoscopy 3 nights ago and just got dgx'd then, not "official" until biopsies are back I guess. My aunt has Crohn's bad for years, and I always "felt" for anyone w/it.

It makes sense for me, too that my digestive has been going down hill and I couldn't tolerate this and that more and more, like chickpeas (in my favorite hummus) to wheat, to getting really bad if I even had a (bite) of wheat, barley, milk, some milk products (cheese okay) and so on. Now I'm on a BLAND diet b/c I guess I had a flare and my Gerd isn't helping.

I'm trying to *deal* too and my mom I know she has been so WORRIED about me this month b/c it is her sister with the bad case of Crohn's and she knows what she goes through. I guess what helps me (besides God and my family) is that I have been through serious health problems before for years ups and downs w/my thyroid. I know what the *drill* is for a health problem. I have to 1. keep my head up 2. get out and LIVE LIFE no matter what 3. keep cheery and faith 4. realize it's not the end of the world and realize that other people have worse issues and get along in life fine 5. never let anxiety of my condition overwhelm me and my life (again) just get out, workout, make friends, join groups, talk online and whatever helps to heal.

I learned from my first illness that cooping up with anxiety/stress and thinking I'm not worthy for anybody's friendship, on the couch and computer were not for me. So I'm dealing w/ these newfound issues, I am getting as much sun as possible, saying yes to all my friend's requests to go places, started a new church and taking my son out to a new park or adventure daily (beach, park, cafe or whatever). I refuse to be cooped up with feeling sorry for myself.
-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 3/11/2010 5:02 PM (GMT -7)   
I just can't get over how lazy some doctors are. In theory at least, an IBS diagnosis isn't meant to be given until other GI disorders, eg Crohn's, UC, coeliac, gut infections, etc. have been ruled out. But it seems like some doctors hand out the IBS diagnosis as willy-nilly as they do antidepressants to the mildly down in the dumps.

I was lucky. Like you, my disease had an extremely mild start. Diarrhoea 1-2 times a day, no abdominal pains, no blood in my stool. But had the full gamut of tests done: stool sample, blood sample, colonoscopy and barium follow through, and a diagnosis of Crohn's was returned. Incidentally, I agree about preferring a colonoscopy to the barium follow through - I find one large cup of that unspeakably foul white liquid almost impossible to get down, never mind two.

My main piece of advice would be if you find a maintenance med which works, stick with it for two reasons. 1) meds don't get rid of the underlying disease, they just keep it in abeyance; stop the med and the damaging inflammatory processes will likely start up again. 2) untreated disease tends to get worse over time. I can personally testify to #2, unfortunately.

Good luck :p

mighty.mouse.xx`
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/11/2010 7:24 PM (GMT -7)   
Hi,

first off i COMPLETELY agree with preferring the colonoscopy to the barium swallow and follow through! I couldn't get the whole cup of the chalky stuff down the second time! thank god I am under 5ft tall and less than 100 pounds so I only needed a few sips! I definitely feel your pain going through all the tests, however I have been sick my entire life! its kind of nice now though because Crohn's explains almost every problem I have ever had from cronic diarrhea to looking like I am 14 at 20 years old! Its kind of nice that once I get every thing under control nearly everything gets better (stomach, diarrhea, joint pain, muscle pain, fatigue, hair loss) literally everything (excluding my height and looking like I am 14, but thats probably permanent :P)

When I had my first severe flare last year my doc. actually told me it was a stomach bug ... and gave me antibiotics!!!! BAD MOVE DOC.!!! antibiotics made it WWAAAYYYY worse!!!! then they told me I was having an IBS flare (like you I had been diagnosed with IBS to explain away my symptoms at 5 years old) then when it STILL didnt get better my mother tracked down a GI and told my doc. to refer me whether she liked it or not, she agreed, my mom was routing for celiac because it has a "natural and alternative path" like a glutton free diet and vitamines. but nope, got stuck with crohn's!

I'm a new member here too and am SO glad I found it because like your mother, mine is crying because I have to take humira and because crohn's is considered a disability at my college (she says it makes it seem more real and worse) AND because she had a sore stomach the other day where she couldn't get herself away from the bathroom and had a nervous break down because thats what I go through every day ... so I REALLY don't want to tell her that I discovered bleeding today ... I'll take myself to the doc's thanks!!! no point in making her more scared and worried than she already is. if its something bad then i'll tell her, but if its nothing, I'd rather not worry her.

anyways, I'm bored thats why my post was so long! sorry!! good luck with everything!!! and if you need anything I'm really good at researching!!!

Welcome :)
Currently 20 years old, Diagnosed March 2009 with Crohn's through all of large & small intestine and colon.
Newly quit smoking (hopefully will feel better soon)
Currently using prednizone and immuran, will be switching to humira soon.
** This too shall pass**


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/12/2010 8:10 AM (GMT -7)   
nice cup of tea - you are soo right about drs being lazy. my primary care dr has a wonderful nurse practitioner and it is amazing to me how I get more attention from her than my previous docs. I just love her! I should have known to leave this doc sooner when he told me I was a baby killer for wanting oral contraceptives!!!!

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/12/2010 8:20 AM (GMT -7)   
I love your name mighty mouse!!! The barium swallow was the worst. I thought it would be so much easier because I could eat the day before but NOT!!! I drank the first big gulp of the thick barium ok..but then when they gave me the thinner stuff and I had to drink it laying down on my stomach that was bad. I almost hurled it back up. The dr then informed me that I also have mild acid reflux (just perfect) and when I went to my gi for the results I was also told Ihave sacroilitis(of course..why not Iask myself) I try to laugh about it and I know right now I have nowhere near as bad sypmtoms as other people but this is a very hard disease to have. But Iam learning as I go. The pain in my gut is resolving so I think the antiinflammatories are finally kicking in but I seem to be having more diahrrea than before I started the meds. Just this morning I learned it is never a good idea to take immodium on an empty stomach. I typically get up at 5:30, work out by 6:00 and then take my muscle relaxers( i read exercising after taking one can be dangerous as they inhibit sweating). Well I was finally tired of dealing with the diarhhea and took some immodium..then of course 45 minutes later I am vomiting (bile mostly because I have nothing on my stomach) and then I just start crying..So tired of feeling tired, tired of waiting for meds to kick in, tired of having to analyze everything I eat for potential harmful effects 3 hours down the road..and hello I am only 2 weeks into this!! Then i give myself a good talking to and move on. Hopefully pretty soon I will get past the pity me stage that I have for a few minutes each day. I am trying to remain positive!! Thank you for your kind offer to contact you for questions. I really appreciate it!!tongue

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/12/2010 11:01 AM (GMT -7)   
peace and happiness - I so appreciate your input. It is nice to know that there are people out there just diagnosed learning to cope right along with me and that I am not the only 'freak' in the world. I don't know where you get the energy with little ones running around. I have a niece I pick up every day and when the pain started and I was losing weight I had no energy and I hated that the most. She would want to play and do stuff and I just could not. I am getting energy back now little by little.

mighty.mouse.xx`
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/12/2010 6:25 PM (GMT -7)   
hahaha thank you, its my nick name because I am 20 years old, look 14 and am about 4"10. :) im small but mighty!!! in many ways! haha. I'm right there with you in the pity stage!! I have been diagnosed for a year but coping for most of my life, there have been nights when I am quietly trying to slip out of bed every half an hour to rush to the bathroom without waking my boyfriend (the poor thing has worse sleeps than I do when I have a flare) and then when he eventually shows that hes awake I always burst into tears for burdening him. thank god he always holds me and quiets me down, rubs my tummy and i normally sleep well for about 2 hours after that. he has been with me since before diagnosis and has JUST convinced me to wake him up at the first sign of my flare worsening so he can get me to sleep earlier.

I find there is a lot of pity and helplessness involved with CD, I constantly feel helpless, but I have a great support system, even more so after finding this forum, it feels great to be able to help someone, and makes me feel a little stronger, even my boyfriend notices I'm a little more confident since finding this forum.

With my barium swallow, I'm pretty sure I spent most of it crying because I hated the stuff and it had been probably my 5th test in two days ... I can honestly say after being to the docs at least 5 times a month since my big flare 2 years ago that I am officially fed up with doctors and hospitals!! and I just can't wait to put all this behind me!!!!

hope your having a good flare free day =]
Currently 20 years old, Diagnosed March 2009 with Crohn's through all of large & small intestine and colon.
Newly quit smoking (hopefully will feel better soon)
Currently using prednizone and immuran, will be switching to humira soon.
** This too shall pass**


Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/12/2010 7:25 PM (GMT -7)   
lol...I come from an energetic family, I'm probably the least energetic. My mom/aunts and sister are always running around, my sis works out like 85 mins a day and my mom goes to casinos for days...omg. lol. I walk into a casino and I'm instantly tired. My son keeps me on my toes, but I love him, I wouldn't want to be sleeping on the couch all day, I already did that with thyroid and don't want to go back to that again. I'm lucky b/c I have a supportive husband and family, they aren't as close as I like but that's okay. Plus my son goes thru his own health things, so when I'm having an unwell day, I ask him to just please settle down and we'll take it easy for the day. He's also in preschool and stuff and I like driving around in my car. I can totally go to a park for a couple hours, soak up the sun and sort of daze and my son plays to his heart's content. He'll be in school in a couple years and then I'll probably miss him and have to keep motivated another way.

I guess I'm used to being busy. I was a single mom years ago and worked 55+ hours a week, took care of my daughter, had an active social life, lived on my own and attended college. I can't imagine all that now! Maybe that's the one lesson I need to learn; slow down, don't OVER DO it and life doesn't have to be going to carnivals type of excitement all the time. I do come from a family like that, if they just sit and read and not do much, they think it has to be excitement all the time. But I am proud of my mom now she does go to Barnes and Noble, get a tea and read for hours on end a week now. Good for her!

Sorry for the book, too!
-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.

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