# Diagnosed at age 50 & over Support Group



## Doyourdream

I would like to talk with others who were diagnosed after age 50.   I have been very healthy for most of my life and this has really been hard to wrap my head around.  I thought I had IBS for the last few years as my stress level was accelerated due to being the caregiver for my mother who had dementia. The diarrhea worsened in June of 2013 and a colonoscopy showed that I had a narrowing in my terminal ileum.  Further testing CT Enterography showed narrowing and active inflammation in the terminal ileum. I have so much anxiety of this diagnosis and wonder if my life will ever be the same.   This disease is so unpredictable and variable and I have to admit I am a bit of a control freak.  Not to mention that for most of my life I have not been on any medication.


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## MicheleM

Hello there! I am 13 years over 50. I was diagnosed with UC in my late 20's, went through the medical interventions and ultimately had my colon removed at age 31. I was 'cured' of colitis. Now at this ripe age I have been diagnosed with Crohn's and, like you, have narrowing of my terminal ileum. The diagnosis really threw me. Because of my history, I learned a lot about IBD and always was thankful that I had colitis and not Crohn's. I was a bit devastated by my diagnosis, which is quite recent (Oct 2013). 

I had bad reactions to the 2 medications my GI doc gave me. I have had a scope of the terminal ileum and the doctor said the small amount of inflammation he saw didn't warrant trying another medication. I am not taking any medication at this time.

I understand your feeling of not being in control, as the disease is unpredictable. I am trying to be proactive by making sure I have a healthy diet and trying to keep up my exercising. I have done a lot of research on Crohn's and have found this forum very helpful, especially the info on medications and diet. I also listen to my doctors' and dietitian's advice. Although they have all said to eat anything and try not to be 'food-avoidant', I have been trying the Paleo diet (no grains or dairy, lots of vegetables) for the past 2 months and have been symptom free. It has been only a short time frame on the diet, so I'm not saying it is the answer. I'm just saying that I feel well and don't have any symptoms.

Are you having active symptoms now? Are you taking medication? Do you have people who can provide emotional support? 

I like your forum name. It's very positive. Keep in touch!


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## MicheleM

Just saw your question about entocort. I have not tried it, but my GI doc and I have decided that it will be the med we will try if my symptoms return, as it is more directed to the intestinal area and not as 'global' as the other meds we tried (azathioprine and  6mp).


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## Doyourdream

Hi Michelle:  Thanks for responding.   I have d symptoms but not excessive....once a day.  I have no pain and never have.  My blood work does not show active inflammation markers ( but I know that is not always a reliable symptom)  My doc started me on Lialda for a month but it increased stomach activity and d.  So I am off of it for another week and if d is not gone he wants to try Entocort.  I bet that diagnosis did throw you for a loop....I have heard that people can have both UC and Crohns....Glad the Paleo diet is working for you.  I have considered looking into that.   Keep me posted.  Thanks! Best of Luck to You.


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## Grumbletum

Hello there
And thanks for setting up the group  I was diagnosed at the age of 51. Having been lucky enough to be robustly healthy up til then, like you say it was a shock to the system. It's interesting what you say about stress. I'd moved back to the UK after 20 years working abroad about 2 years before I got all. We partly moved to be a bit closer to my Mum who was showing the early signs of dementia, and who quickly began to go downhill after we got back.
Two years of meds didn't manage to heal the bladder fistula that was a complication of my disease, but happily I have been very good since the surgery to remove it.


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## Doyourdream

Hi Grumbletum and thanks for your reply.   I like your name.....it's so appropriate isn't it?   It helps to connect with others who have this disease....I don't know about you, but I have had a hard time finding others who have this and it's a lonely feeling.  I was the sole caregiver for my Mom for the last few years until her death in November of 2013.   It was extremely stressful for me and I had on and off intestinal issues for most of those years.   I would not be surprised if stress brought it on.   So glad you are off meds and doing fine....Thanks again.


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## Mlits

New here. 
58 year old Caucasian female, not formally diagnosed, but well on my way to that lovely circumstance.

Although I (probably) began my journey at age 28, at which time I had a major "gut surgery" about which I was told practically nothing-- I have been dealing with the consequences of that surgery now for 30 years and they have been getting worse.

(How does a trip to France sound to you--where you are fearful of EATING??? Anxious about visiting "old castles" due to lack of facilities, etc, etc. I'm sure all of us have similar stories.)

I am very grateful, however for the most excellent job that the surgeon must have done in an emergency situation-- because it has held well for these thirty years. It's not the surgical site that I am having problems with. It's the plain old consequences of missing a significant part of the intestinal tract!

Sigh.

Thanks for reading


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## Doyourdream

Dear Mlits:  What a trip to France that must have been!   It is very frustrating to say the least....I thought I had IBS for about 3 years and never had too much urgency... My diagnosis was suspicious for crohns and I have very mild symptoms.   I tried Lialda and it made my symptoms worse and now my GI wants me to try Entocort...I'll keep you posted.. Right now I'm trying the SCD diet and hoping that helps.   Hang in There.   Glad that you are on this site.


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## Mlits

Doyoudream: the little part of your story seems parallel to mine. My symptoms are erratic, I haven't been able (maybe willing...) to track triggers...

At this point, I am arming myself with information... Not willing to take long-term mess if I can manage symptoms less chemically. 

Have md appt next week ( he'll probably throw me out) 

Currently trying liquid d3 (got it at Walgreens) and papaya tablets with lactaid as needed. So new to this idea, I can't tell BUT-- first time I've felt "normal" in my gut for so long, I didn't recognize it as normal!!

Hope you are doing well


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## dave13

I was diagnosed 2 months after I turned 50 this past November.Long story kinda short:I would wake up at 2:30a.m. feeling awful.This went on for a couple of months.It wasn't every night and I would  feel o.k. the next day.It became more frequent and I started to throw up and have diarrhea.It went from just feeling bad to being violently ill and intense pain within two days.I went to the ER,had tests.I was told I had a close to complete blockage in my small intestine and needed surgery asap.I had a resection,about 8 inches,in my duodenum.I was told the day after thanksgiving I had crohn's,kinda ironic timing.I had saltines for a thanksgiving meal.They were awesome because I hadn't eaten in 5 days!!! I see my GI for the first time next week.I am currently in remission.I talked with my family and no one can recall anyone,alive or deceased,who had crohn's.I hope this helps.Feel free to ask me any questions.


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## Doyourdream

Thanks Dave.  Good luck with your appt and please keep us posted about your progress.  I bet those saltines were heavenly !  Sounds like you had an abrupt introduction to crohns.  My symptoms were mostly a week of severe diarrhea in June and a colonoscopy that showed stricture in terminal ileum but no blockage.  So far I have had no pain or vomiting    I tried Lialda but it made diarrhea more frequent.  In fact before I went on it it had really gone away.  The next step would be Entocort but I'm kind if afraid if the side effects.  My GI referred me to another doc who specializes in IBD.  But I can't get in until May.  I am currently trying the SCD diet   It's such a mind boggling  thing to get used to isn't it?    Really having a hard time wrapping my head around this. I've been so healthy my whole life.  I have no one in my family that has had this either.  I have had extreme stress and took 8 aspirin a day for 35 years.  My family grew up eating them and it perpetuated me tsking them due to rebound headaches from the aspirin.


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## Axelfl3333

i was diagnosed at 50 and i,m now 51 was medically paid off from work but got my full pension.the company was decent with mobile engineer with no toilet facilities wasn,t practical


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## carbuncle

I was in a similar situation, not having been ill until late 2004 when all that changed.  I went through a series of Cdiff infections and hospital stays where the hospitals had difficulty identifying the Cdiff.  This eventually triggered Crohns with severe constricting in descending colon.  The inflammation is not limited to that area and will probably need to be removed at some point.

Thanks for setting up the over 50 group as there are not many of us and fewer still with large intestine issues!

http://www.crohnsforum.com/images/smilies/crohnpoo.gif


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## dave13

Doyourdream said:


> Thanks Dave.  Good luck with your appt and please keep us posted about your progress.  I bet those saltines were heavenly !  Sounds like you had an abrupt introduction to crohns.  My symptoms were mostly a week of severe diarrhea in June and a colonoscopy that showed stricture in terminal ileum but no blockage.  So far I have had no pain or vomiting    I tried Lialda but it made diarrhea more frequent.  In fact before I went on it it had really gone away.  The next step would be Entocort but I'm kind if afraid if the side effects.  My GI referred me to another doc who specializes in IBD.  But I can't get in until May.  I am currently trying the SCD diet   It's such a mind boggling  thing to get used to isn't it?    Really having a hard time wrapping my head around this. I've been so healthy my whole life.  I have no one in my family that has had this either.  I have had extreme stress and took 8 aspirin a day for 35 years.  My family grew up eating them and it perpetuated me tsking them due to rebound headaches from the aspirin.


  It was abrupt to say the least.I thought I had food poisoning at first,13 hours later I'm in a hospital bed post-op with a stapled stomach and a head full of questions.I was relieved when I found this forum during recovery.I'll let you know what my GI says.


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## Mike58

Good to be here.  I was dx with Crohn's in October 2012.  I was 57.  Just starting a new job after a career in self employed sales.  Felt great until the day the company called me to advise I had been accepted for the job.  I felt like I was coming down with the stomach flu earlier that day.  The next day I felt much worse, called my GP and was told to go to a clinic as he was booked all day.  I went to a clinic and the Doc there told me she didn't think it was the flu but something intestinal.   I was told to drive to the hospital immediately for a CT scan.  I did.  The ER docs did find a slight blockage.  I then spent the next 10 days in the hospital, not being fed, no liquids, test after test, ending up with a Colonoscopy.   That doc told my wife he was 99% sure it is Crohn's.  In July 2013, I was rushed by ambulance to the ER and was told I had 3 strictures in my Ileum.  My GI doc wanted to try Remicade.  In August 2013, 20 inches of my TI was removed.  I have been unable to work since then.  Used up my STD.  Have applied for SSDI.  
I am grateful that a diagnosis was made.  Grateful for a very supportive wife. And glad I found this forum.


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## Mlits

Mike58 said:


> Good to be here.  I was dx with Crohn's in October 2012.  I was 57.  Just starting a new job after a career in self employed sales.
> 
> I am grateful that a diagnosis was made.  Grateful for a very supportive wife. And glad I found this forum.


Hi Mike-- Sales rep, huh? I was one for eleven years-- during my "It must just be scar tissue. Just don't eat" days...Pain? Yeah. According to the last colonoscopy I had, it was the "ileum" that I lost, and I am just now figuring out what exactly that means to someone...even 30 years later...

I know EVERY decent restroom that is instantly accessible in my entire sales region. oo: So sorry that you've had this horrible experience. Mine obviously did not come on me the same way-- I had had surgery 30 years ago, and knew absolutely nothing.


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## Mike58

Hi Mlits,
I was in insurance sales for over 20 years.  I got tired of the companies attitude of what did you do for me today?  They never cared what I did to build a successful and profitable agency.  Oh well.  I do think stress is a big factor in Crohn's.  My surgeon told me that I would need to make a decision one day between working or not.  My new job was working in a mortgage service call center.  My job was to try and qualify people who were 90 days or more behind on their mortgage, into a different loan.  Some were ok but many people would never qualify.  Next step...repossession.   It was a difficult job to say the least.
My next step is the PillCam.  Probably by end of month.  Doc is not sure what is causing my D 6 to 10 times each day.  He also is talking about an exploratory surgery to see what is causing the constant pain in my left abdomen.   Should be an interesting month.


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## carrollco

Hello! Diagnosed at 32 with extreme IBS, diagnosed with Crohn's at 56. I am sure I would have been diagnosed sooner but I refused to see a doctor or to even tell anyone about it because they convinced me it was all in my head. Oh. I just turned 59 AND started Remicade which has turned my life around.


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## Doyourdream

Wow. It's do frustrating when someone tells you it's all in your head.   Do you have any narrowing in the bowel?  Any side effects from remicade ?


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## carbuncle

What I love is when asked a question the well educated doctor immediately leaves the room to look up an answer or they are so desperate for clinic funds they extort a prescription of prednisone in exchange for the promise of a colonoscopy or with hold prednisone prescriptions ($4) all together to try to force you into Remicade or other $10000 prescription because they get kick backs.


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## dave13

This may sound odd,but...I see my GI next week for the first time.I was wondering what to expect from our first meeting.Since I am 50 will there be questions or suggested tests because of my age.My resection was from my duodenum,should I prepare for a esophogastroduodenoscopy?(is that one heck of a word or what!?)Or a enteroscopy.My last colonoscopy was a year ago.The colonoscopy is the only 'oscopy' I have had.You can read from my previous posts that my introduction to crohn's was abrupt.My surgery and diagnosis was November 2013 and my first GI visit is Feb 2014.The soonest I could get an appointment.I am in remission and generally feel pretty good.I was very sick twice:I cut out all fried foods and gave in to temptation about a month after not eating anything fried.I ate three crab rangoons at supper.I was so sick later that night!The second time was my wifes birthday dinner last week.We went out and I was careful about ordering.We got home and after a hour or so I was still feeling good.So I had a small piece of cheesecake,my wifes favorite.Violently throwing up not long after.My only food disasters so far.I tolerate roughage and I do o.k. with yogurts and low fat cheese.I've lost 23 pounds and seem to stay around the 169-170 area at 5'9".I seem to have lost a lot of muscle,which I hope to regain once I get more active.I do feel quite tired from time to time and just have no energy.I'll stop rambling now.I'm just nervous about that first visit.


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## fozheart

Hi everyone!
I just turned 52 last month.  Very similar stories here!  I was 49 when I suddenly felt very sick- terrible pain and and vomiting for over 24 hours.  A CT in the ER showed diverticulitis that had caused a complete blockage.  After a week in the hospital, I had a perforation in my sigmoid colon, and had an emergency resection.  3 months later my colostomy was reversed, and 2 months after that, I had an incisional hernia. So, 3 surgeries within 6 months.  This past year I have lost weight mostly due to the fact that the more full I am, the more I hurt, mostly in the area where the stoma was.  It feels like everything stops at that point, in my descending colon, and when it finally comes out, it is diarrhea.  I have had 2 flexsigmoidoscopies  in which they have dilated a stricture.  I just feel like I am passed off to one doctor after another now though.  The excitement and challenge of having a complex patient is over for them... I feel like a hot potato being passed. (Wow..remember that game?)  Anyhow, thanks for starting this thread!

Carol


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## crone kh

Mlits said:


> New here.
> 58 year old Caucasian female, not formally diagnosed, but well on my way to that lovely circumstance.
> 
> Although I (probably) began my journey at age 28, at which time I had a major "gut surgery" about which I was told practically nothing-- I have been dealing with the consequences of that surgery now for 30 years and they have been getting worse.
> 
> (How does a trip to France sound to you--where you are fearful of EATING??? Anxious about visiting "old castles" due to lack of facilities, etc, etc. I'm sure all of us have similar stories.)
> 
> I am very grateful, however for the most excellent job that the surgeon must have done in an emergency situation-- because it has held well for these thirty years. It's not the surgical site that I am having problems with. It's the plain old consequences of missing a significant part of the intestinal tract!
> 
> Sigh.
> 
> Thanks for reading


When I was first diagnosed, I visited one of my children who lives in Paris.
You are right about the toilet facilities. I managed the diet problem for the few days I was there by ordering a big baked potato in restaurants. Fills you up and, hopefully, the baking process decontaminates the potato. The cafes make excellent coffee and, again, the boiling water....et cetera. This is NOT to accuse the French of poor hygiene habits, but when you're already sick and 8 thousand miles from home you want to avoid new, local microbes. Made it back in one piece. <g>


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## crone kh

Does anyone here have a phobia related to colonoscopy? I was trapped in the hospital for my last one. Am afraid my gastro will fire me as a patient soon.


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## carbuncle

Major, major phobia.  During initial onset, I was left on a gurney for over 4 hours till my turn while morphine wore off.  

A few years later and in the middle of an untreated flare, I regurgitated stomach contents causing me to pass out from lack of oxygen.  Idiots did not know enough to clear my air way and put me on O2.  My wife told them to do so!!!

Most recent one was much better as there was very little discomfort and was not during a flare.


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## LodgeLady

Hi, I'm 54 yrs. old and was diagnosed Crohn's at the terminal ileum in July 2013. Diagnosis was by colonoscopy and biopsy. Problem is I also had a bad gallbladder for which I just had surgery to remove it. So, going to see specialists at U of MD Baltimore to re-confirm this diagnosis.


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## pcflausa

I just had a fistulectomy at my anus 5 months ago.  I was wondering if anyone with crohns had ever been prescribed pancreatic enzymes to digest their food.  They tell me I have crohns but my daughter died at 22 of cystic fibrosis.  If a person doesn't digest their food then why do doctors not prescribe enzymes to digest it for them.  She had to take them to digest her food and they kept her alive for 22 years.  It seems to me that doctors only treat the disease with pills and never just get right down to the right thing.  I don't digest my food so why not give me enzymes that do it for me?  Just wondering if anybody else sees this or if they have actually been treated with prescription enzymes (like Creon).


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## Doyourdream

LodgeLady I would want to make sure of the right diagnosis as well.  Did you have symptoms of crohns.  If so what were they?


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## LodgeLady

Every symptom I had ( except for the biopsy results) could point to either Crohn's disease or Gallbladder disease. Severe nausea, cramping, vomiting which sent me to the ER twice in 3 mos. Weight loss, loss of appetite, abdominal pain, especially after eating. Biopsy showed inflammation at terminal ileum with increased CRP level. So my GI focused on Crohn's ( never even checked on my gallbladder :ymad. So for a whole year tried different meds for Crohn's: antibiotics, 4 mos. Prednisone, Pentasa, Humira. Still had the pain and after 9 mos. finally decided to look at the gallbladder. Hida scan showed a totally non functioning GB!!!

So I am almost 2 weeks post op cholycytectomy. It's too early to say this was my whole problem. I feel 75% better!! But still have some cramping and abdominal pain after eating with occasional nausea. This could be surgery related or Crohn's rearing it's head. Still don't know for sure...


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## carbuncle

Hi LodgeLady,

I trust your GI mentioned gallbladder removal may or can/may trigger Crohn's flare?


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## LodgeLady

carbuncle said:


> Hi LodgeLady,
> 
> I trust your GI mentioned gallbladder removal may or can/may trigger Crohn's flare?


No he did not!! Can you speak about that a little more?


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## carbuncle

LodgeLady,

About 9-10 months ago, I was having gall stone symptoms.  I had an ultrasound to verify gall stones and then was referred to a GI surgeon.  After reviewing current symptoms and ultrasound, surgeon recommended not to remove gall bladder as the surgeon had a significant number of patients where the gall bladder removal either triggered a flare or new crohns symptoms.  I decided against surgery as the symptoms had subsided.  Sometimes the stones move in and out of the gall bladder.

Hope this helps.


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## carrollco

Well, TMI beware, I do have some narrowing and over this weekend I became horribly constipated which is a first for me in over 30 years. I sat in the bathroom with the door closed, picking my husband's brain as he stood on the other side,  about what to do since I really had no idea. Eventually it came out, but there must of been 5 pounds of crap--kidding aside. It was scary and it came with the fissures, blood, and mucus I thought were gone. So, I am feeling a little down today but this was only my second infusion so I am still hopeful.


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## LodgeLady

carbuncle said:


> LodgeLady,
> 
> About 9-10 months ago, I was having gall stone symptoms.  I had an ultrasound to verify gall stones and then was referred to a GI surgeon.  After reviewing current symptoms and ultrasound, surgeon recommended not to remove gall bladder as the surgeon had a significant number of patients where the gall bladder removal either triggered a flare or new crohns symptoms.  I decided against surgery as the symptoms had subsided.  Sometimes the stones move in and out of the gall bladder.
> 
> Hope this helps.


I had no stones. Sludge and a non functioning GB. I was in constant pain right before surgery. So in this situation it absolutely had to come out. Glad yours is stone related and you have a choice.


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## Mike58

Saw my GI doc today for f/u.  Had Remicade infusion yesterday.  Just feel tired as usual after infusion.  GI doc ordered up another MRI of lower colon to check on my fistula.  It's been pretty active lately.  Also more blood work as he thinks I have a bacterial infection in my lower portion of the small intestine.  Looks like antibiotics again.  Tapered off the horrible Prednisone last week.  Doc says it will take a few months to drop off the weight gain.
We lastly discussed me going to Mayo in MN.  He can't figure out my left abdominal pain so he thinks I might be a good candidate for a workup.
Anyone have any experience with the Mayo?  Hope everyone is hanging tough....


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## dave13

Good luck at the Mayo Mike58.Nice your off the prednisone.Hopefully the infection will clear up quick.I see my GI this coming monday for the first time.


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## ellie

Another "over50" diagnosis here...
I suspect our collective input may possibly contribute to the overall understanding of the aetiology of IBD, and the biphasic nature if it's presentation...
At just over 50 I had my first episode of iritis after a couple of weeks of uncharacteristic diarrhoea, with an associated acute arthritic ankle. My "day job" training (healthcare area) alerted me to the connections between arthritis/diarrhoea/iritis... But my GI symptoms were fairly short lived and not too bad... No food sensitivities particularly, battle with plumpness that began in childhood, minimal abd pain, and a lifelong tendency to constipation... So the initial working diagnosis was Reiter's syndrome.
So IBD wasn't even vaguely on my radar (my main awareness of CD dated back to clinical student days, with a particularly frail lady who had multiple per cutaneous abdominal fistulae)
So I was completely nonplussed when after a second episode of diarrhoea 5 years later,this time with some PR bleeding, I finally got round to having a colonoscopy and got a diagnosis of CD! Horrified understates my initial reaction!! (And besides, I hadn't been aware of the second, smaller peak in incidence until it applied to me!!) 
At the moment I am in remission (on scope + histology), taking sulfasalazine, and the inevitable fish oil/VitD supplements. Aching joints are my main complaint.. but then, I've never been this old before, either.. :/
It will be interesting to follow the over 50s patterns.. Could well shed some light on the nature of the disease (or maybe there a several subsets that live under the Crohn's umbrella!) 

 HD


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## ellie

Oh, and I could take out shares in Yakult...


 HD


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## greatauntalta

Wahoo! People my age...54. My story is so similar to those posted. Started with diarrhea, went on for 6 months til the pain got so bad that I had to do something. Removed my gallbladder even tho only 3 of the 7 mds agreed that it was the cause...it wasn't. and here I am 20 months later still trying to find a happy balance. I am looking for a non narcotic pain reliever that won't do in my liver.(I take Asacol, cholestyramine, zantac and tylenol 3) and I am also looking for a way to deal with my less then understanding but hopefully well meaning extended family that want me to 'do something'(not sure what...includes going back to Boston where the 'real mds' are?) to make myself well(gain back the weight etc). I am not the person that I was 2 years ago. Life has changed so much. I am living day to day, sometimes frustrating and scary. My husband and kids have been great through out the whole mess. So happy to have found this site.


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## PC TX

Hi all,
I'm 71, was diagnosed at 62. I had the terminal ileum removed 2012 and have been dealing with scar tissue buildup at the resection site since.  In the past 14 months I've had 5 colonoscopies for dilation. I am taking Methotrexate once a week (tabs).  Crohn's returned -- a year after the surgery.  It is mild at this time.  I was given budesonide for inflammation but I've taken that drug three different times in my nine years with Crohn's without success.  But it is difficult to convince the GI's it doesn't work.  Predisone works but ohhh the BIG P drug does have some side effects! 

I have an appointment with my GI in four weeks, just had the 4th colonoscopy in a series and it's time to regroup. What next?!!!  

I take D3 in liquid form, Vitamin B12(methycobalamin) by patch, probiotic caps, zinc, Folic Acid and I avoid processed and GMO foods in every extent possible.  I get a lot of my nutrients from quality veggie and fruit powders which I use in smoothies.  I'm on a LOW fiber diet since fiber does do a number on a gut with no ileum! This may seem strange but every day or so,  I use 1/4 teaspoon chia seeds in my cereal or smoothie and it seem to help absorb some of the fluids in the gut (it's a soluble fiber). ???   Recently I've been working on balancing my gut PH with fresh squeezed lemon juice in a glass of water before breakfast.  I'm told that will also help detox the liver which is good since I'm taking methotrexate.  

In my experience, I truck along fine for awhile and then I eat something or do something and my gut gets all bent out of shape about it and then I begin all over again trying to figure out the problem and it's this way even if I'm in remission.  Otherwise, I'm blessed because I read of much worse situations with others here at the Crohn's Forum.

A side note, I work out at the gym and my trainer is a 24 year old young lady who also has Crohn's!  It's so good to share the woes and triumphs of IBD with a real live person who knows first hand what you're talking about!!  Have a great day all.  PC


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## Write2bheard

Hi all. I was diagnosed with Crohn's in 2012 at 58. I had been under the care of a GI doc who was treating me for IBS. After losing more than 50 pounds, my family insisted I get a second opinion. An MRI and colonoscopy  within two weeks of changing docs resulted in Crohn's diagnosis. Started out on Pentasa and Enticort, but started Remicade in January 2013. Ended up in ER the end of March and spent 4days in the hospital. Neither the surgeon nor my GI doc wanted to cut me open if we could avoid it. They increased my Remi dose and I still get it every 5 weeks. My GI recently referred me to IBD specialist at University of Maryland. She thinks Remi is not enough. I was a proposal manager for an IT services firm, but went out on STD in September because my memory and concentration were affecting my performance. Am appealing denial of LTD and just applied for SSDI. I probably should have done that after the hospital stay, but pressed on as long as I could. The financial burden of having no income has been a huge stress. Used all my retirement savings to stay afloat. Now hanging in with help of my kids. My husband works but I was the primary income. Going from $100k a year to $350 a week has been tough. Scheduled for MRIs next month. Guess we will see how that goes.


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## LodgeLady

I am also being referred to U of Md Crohns specialist. But my doc agreed to repeat my colonoscopy in light of my emergency gall bladder removal. I am still losing weight since my surgery a month ago( gallbladder). I see my GI tomorrow ahead of our scheduled appointment. I think he's going to push the colonoscopy up. I've lost 20lbs. in two years. Still not too much of an appetite post GB surgery. Only thing I altered is that I am gluten free. I drink Boost take vitamins, etc. still have constipation. What else can I do to gain weight? How do you like U of MD?




Write2bheard said:


> Hi all. I was diagnosed with Crohn's in 2012 at 58. I had been under the care of a GI doc who was treating me for IBS. After losing more than 50 pounds, my family insisted I get a second opinion. An MRI and colonoscopy  within two weeks of changing docs resulted in Crohn's diagnosis. Started out on Pentasa and Enticort, but started Remicade in January 2013. Ended up in ER the end of March and spent 4days in the hospital. Neither the surgeon nor my GI doc wanted to cut me open if we could avoid it. They increased my Remi dose and I still get it every 5 weeks. My GI recently referred me to IBD specialist at University of Maryland. She thinks Remi is not enough. I was a proposal manager for an IT services firm, but went out on STD in September because my memory and concentration were affecting my performance. Am appealing denial of LTD and just applied for SSDI. I probably should have done that after the hospital stay, but pressed on as long as I could. The financial burden of having no income has been a huge stress. Used all my retirement savings to stay afloat. Now hanging in with help of my kids. My husband works but I was the primary income. Going from $100k a year to $350 a week has been tough. Scheduled for MRIs next month. Guess we will see how that goes.


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## Write2bheard

I like my doctor at UofMD very much. I think they are more familiar with all the odd symptoms I have than my local doc. They take as much time as needed with you. I always felt my local doc was hurrying through. It is tough to gain when you can't eat anything. I finally resorted to double stuffed Oreos. Not healthy but lots of calories. I lost 60 pounds in about 9 months. That was a third of my total self. I have gained back about 25 pounds. I have never had any problem going. I have the opposite problem. I haven't had a solid BM since they removed my gallbladder in 2003. I have tried all kinds of diets. After my Remi I can eat pretty much anything for about 3 weeks. By the time for next infusion I'm back to low residue. I pig out on vegetables and meat while I can eat. I'm scheduled for contrast MRI next month to see where the inflammation and scar tissue stand. My biggest problems are memory fog, fatigue, and blurry vision. The vision is from cataracts that are apparently growing worse daily. I know we are supposed to eat a healthy diet, but I haven't found one that works. Hoping they come up with a cocktail of meds that gets this under control. I don't take any pain meds, but I've heard they will constipate you. It took me about 3 or 4 months to recover from my GB surgery enough to return to a normal diet.


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## LodgeLady

Can your regular GI doc do the testing or do you have to go to U of MD? Did they send your doc a plan for you to follow? 

Problem is when I eat brownies, certain carbs I get nausea. Certain vegetables too. I'm eating better but not as much as I thought I could. 

Don't know if he'll do a colonoscopy first or possibly start me back up on Pentasa and or try Enticort. We are still trying to nail down the diagnosis in light of the bad GB. Had inflammation at terminal ileum last biopsy, it was mild. Wonder if that could go away if GB was inflamed all along?



Write2bheard said:


> I like my doctor at UofMD very much. I think they are more familiar with all the odd symptoms I have than my local doc. They take as much time as needed with you. I always felt my local doc was hurrying through. It is tough to gain when you can't eat anything. I finally resorted to double stuffed Oreos. Not healthy but lots of calories. I lost 60 pounds in about 9 months. That was a third of my total self. I have gained back about 25 pounds. I have never had any problem going. I have the opposite problem. I haven't had a solid BM since they removed my gallbladder in 2003. I have tried all kinds of diets. After my Remi I can eat pretty much anything for about 3 weeks. By the time for next infusion I'm back to low residue. I pig out on vegetables and meat while I can eat. I'm scheduled for contrast MRI next month to see where the inflammation and scar tissue stand. My biggest problems are memory fog, fatigue, and blurry vision. The vision is from cataracts that are apparently growing worse daily. I know we are supposed to eat a healthy diet, but I haven't found one that works. Hoping they come up with a cocktail of meds that gets this under control. I don't take any pain meds, but I've heard they will constipate you. It took me about 3 or 4 months to recover from my GB surgery enough to return to a normal diet.


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## Write2bheard

The tests are at UofMD. We tried doing it with them advising, but given that option or just being treated by them directly, I opted the single doctor strategy. They have all the resources in one place. I'm on the Eastern Shore so I was seeing multiple (5) doctors. I can still get my infusions here, but will have everything else done there. 

It seems everyone is different when it comes to diet. Before Remi treatment, I was limited to Twinkies and donuts in addition to liquids. I still have trouble with beef, pork, chicken and most fresh fruit and veggies the week before infusion. I am taking Entocort along with Remicade now, but that will probably change. 

My daughter had her GB out in November and is still having problems. She is scheduled for a colonoscopy next month. Like you she has nausea and constipation.


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## mdd

Thank you! We can better understand   Each other and hopefully help others who will be 50 and cool!  At this stage every twinge I wonder what's that! The body breaks down. We do not bounce back as fast as before but my healing process as I was told by lots of  doctors  it takes others two me it's four months . I learn to be patient . I was given a 2nd chance. I had bypass 4 yrs this June and had long recovery. Cannot work no more so I go to the gym. In  and out of remission . Had Crohn's for over 20 yrs.  I know every bathroom from Pittsburgh to mobile Alabama.  :ghug::smile: take care one day at a time Maria


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## Grumpy1

Not sure who to address this to after reading all of the posts on this site, amazing!  I was diagnosed with Acute CD last December after being ill for 18 mths, found by Colonoscopy and various assorted other lovely tests.  Was put on Prednisone and then Imuran.  Imuran caused pancreatitis and a problem with my gall bladder that they now suggest that I have removed.  Dr suggested Remicade or Humira (sic) and suggested that I research both - have read all available literature on both including that on and attached to this site.  Am really glad that I found this site as I don't know what to expect or who to talk to about CD.  Am 53, sole care provider for 86 yr old mother with alzheimers and work full time; am a little overwhelmed!  Am at the start of this journey and scared spitless which is a new and not wonderful position for me.


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## carbuncle

Humira is not very effective (30%) and Remicade can wear one out.  Maybe Methlytrexate or Cimzia.  Stelara not approved yet but, will be soon.


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## Grumpy1

I noticed that a quite a few people have had their gall bladder removed  is that normal?  Have had a few changes in health while on the prednisone am suddenly an insomniac, have nose bleeds pretty regular, and if Humira and Remicade are not the answer what is currently the best treatment option available?  As I said this is just the beginning for me and was originally told that I had colon cancer which then changed to Acute CD and had a positive blood test for celiacs - endoscope 3 weeks ago showed little or no sign of celiacs so they say it might be a false positive.  Have been pretty healthy for the last 25 years and this is rather a shock.  No one in my family has Crohn's and I honestly don't know much about it except that it is my new friend. I go to the hospital on Friday to discuss treatment for CD and for a bacterial infection that was discovered in my stomach.


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## carbuncle

Hi Grumpy,

Also, 6MP, Asacol with derivatives and a few others.  Have localized trouble spots been identified?


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## MicheleM

Hi Grumpy. Yes it seems gall bladder removal is quite common among Crohnies. Your insomnia is a common side effect of prednisone. You may not have celiac, but some Crohnies have found that they are sensitive to grains (gluten) and/or dairy. Cause or result of inflamed bowel? Who knows, but if cutting them out makes your tummy feel better, so be it. I was a bit overwhelmed, too, when I got my diagnosis. Since then, I've come to accept it, work with my doctor, and learn as much as I can about the medications. Sometimes when a med stops working, they try combining them, so there are lots of weapons that can be used against Crohns. At least we can be thankful we live in Canada with a universal health care system. I cringe reading some of the stories from people who don't.


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## Grumpy1

carbuncle said:


> Hi Grumpy,
> 
> Also, 6MP, Asacol with derivatives and a few others.  Have localized trouble spots been identified?


Hi Carbuncle,

Not that I'm aware of but I will be sure to ask that question tomorrow.  I know that I had "many" ulcers in my bowel, small intestine and large intestine and all were biopsied as my original diagnosis was colon cancer prior to the colonoscopy.  Have been reading as much as I can find on Crohn's and have an amazing specialist who is very good at providing information but I'm still not sure what questions I should be asking in order to get the best information.


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## Grumpy1

MicheleM said:


> Hi Grumpy. Yes it seems gall bladder removal is quite common among Crohnies. Your insomnia is a common side effect of prednisone. You may not have celiac, but some Crohnies have found that they are sensitive to grains (gluten) and/or dairy. Cause or result of inflamed bowel? Who knows, but if cutting them out makes your tummy feel better, so be it. I was a bit overwhelmed, too, when I got my diagnosis. Since then, I've come to accept it, work with my doctor, and learn as much as I can about the medications. Sometimes when a med stops working, they try combining them, so there are lots of weapons that can be used against Crohns. At least we can be thankful we live in Canada with a universal health care system. I cringe reading some of the stories from people who don't.


Hi MicheleM,
Not a big grain (gluten) consumer anyway so cutting them out wouldn't be an issue.  Dairy doesn't seem to bother me.  The only "trigger" food that I have found seems to be eggs which is unfortunate because I like eggs.  Am extremely glad that I live in Canada and that our health care system works as it does couldn't imagine facing this and having to worry about paying the costs that I've read in some of the posts here.  Am having some difficulty with all the Doctor's visits and medications that I am taking though, went from no medications to being a walking pharmacy and from a yearly visit under duress to being at one Doctor or another (sometimes both) every week since December when I got my diagnosis.  I'm also very fortunate in that my boss has been wonderfully supportive and the time that I have to take isn't an issue.  I have a small but strong and vocal support system that won't let me flounder, that is actually how I found this site.  My best friend suggested that I look for a Crohn's support group and here I am.


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## carbuncle

Hey Grumpy,

Good luck with you GI visit.  There are other meds depending on location in the bowel issues.  
In general vitamin B absorption is not good in Crohnies,  Look in resources - vitamin defecencies for more.


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## Romey

After 3+ weeks bleeding hemorrhoids, flu like suymptoms and diarrhea I was diagnosed two weeks ago with Crohns/Colitis via colonoscopy. CT scan results to be reviewed tomorrow with GI. 
I am improving, but still very weak. GI put me on an aggressive regiment of Steroids and Mesalamine. It stopped the bleeding, diarrhea and allowed me to eat enough to put back on weight.
My concern is the long term effect on my colon. The future will tell.
For now I'm taking every step forward I can.
I own rental properties, have been out of the corporate world for 6 years now. I used to travel constantly. Glad that life is behind me. 
My wife is wonderful and very supportive.
I can't imagine going through this alone and at a younger age like so many who have it.
I'm 53yo. I was very active and worked in my business daily. Nowadays it's hard to do much more than drive, maybe walk a little, but my over all energy levels are sapped. Of course, I'm in an initial flare that's got my colon in a state of hamburger.
I'm better, determined to get better. Looks like there are a lot of advancements being made in treatments and it's crazy how so many of us react differently.
Glad I found this forum.


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## Mike58

Sorry I haven't posted for awhile.  I went into heart failure 3 weeks ago and ended up in the hospital for 5 days.  My heart seems to have become "stiff" according to the cardiologist which simply means it is not pumping out as much blood as it used to.  They call it HFpEF.
My diabetes is still out of control, whats new.  No changes in bowel habits.  My GI said I have no active Crohns cells at this time.  He is putting me on Codeine for the D.  It should work about as well as the dilauted and percocet did in the hospital.
Sorry, I'm having a really down day today.  I'm developing a bad case of Arthritis and I think it's from my immune system.  What else can go wrong?


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## Trysha

Hi Mike
Sorry to hear you are under the weather and hope you will soon b on the mend
You certainly have a lot to contend with so it is good that the crohn's is quiet
it will give your body a chance to recover from the other issues.
Feel better soon
Hugs and best wishes
Trysha


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## fozheart

Hi Mike,
I hope that you are going to be ok!  How scary to be in the hospital for heart failure!  At least they seem to have pinpointed the HFpEF.  (I did some reading about it.)  Have they found a medicine to help?  Where are you feeling the arthritis?  Sorry for all the questions; you sure have a lot to deal with.  I hope that tomorrow is better than today was.  Sending hugs to you.


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## crone kh

To Mike 58
There's nothing like a trip to the hospital to upset the applecart, is there? Hang in there and try to think about something else until you feel better.


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## trashoken

Hi Mike I'm new to this so I hope I say the right thing, I wish for you to feel better soon. I've had a bad couple of months in and out of hospital. I hope you have better days to come x


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## Grumpy1

Mike58
Also new here and am hoping that you feel much better soon.  I can't imagine heart issues on top of diabetes and crohn's - I'm have difficulty with crohn's alone so you have my complete and total and heartfelt best wishes for a speedy recovery.


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## crone kh

Just a note to those who are interested in thinking outside the box about treatments...Try this book and persevere until you get to the good parts.
Can't help it, used to be a librarian <g>
Brain Wars by Mario Beauregard


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## Mike58

Thanks to everyone for your support.  I really do appreciate it.
Well, I ended up in the hospital again 2 weeks ago for a week.  I woke up at 2 A.M. to do my thing and started to shake uncontrollably.   Went back to bed. Wife felt my foehead and said I was not hot.  Shivers until 5:30 that morning so took my temp.  101.6.  Then retook it at 6:00 and it went up to 102.3.  The oncall doc said to go directly to the ER which we did.  Was admitted and the testing began.   Heart doc said no problem with my heart on this one.  Crohns doc set me up for another MRE.  Took almost an hour and a half in that tube.  No active crohns was the result.  Lung doc did a complete pulmonary function test and came back with a problem they call Small Lung due to Prednisone use.
Out of the hospital now and going in to see the Arthritis doc on Wednesday.   Still have chronic D.  8 times per day on average.  Will start my cardiac rehab later this month.  Will keep you posted.
Thanks again to you all,
Mike


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## Allison M

Good luck and good health to you, Mike.
Allison


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## fozheart

Good luck with the arthritis doctor appt tomorrow, Mike!  Rheumatologist?  You may already know- mamy of the same meds are used for both rheumatoid arthritis, lupus, etc., and crohns.  Let is know how it goes!  :ghug:

Carol


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## Grumpy1

Okay, just got my second Remicade treatment....got hives one week after the first treatment and the little buggers are back.  Am not impressed.  Crohn's is better, itching is intense not sure which is the lesser of two evils right now.  Suggestions?


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## trashoken

Grumpy1 said:


> Okay, just got my second Remicade treatment....got hives one week after the first treatment and the little buggers are back.  Am not impressed.  Crohn's is better, itching is intense not sure which is the lesser of two evils right now.  Suggestions?


For the itching I used Avalon cream as it has a numbing effect and portion an antihistamine, but when it got really bad I used Eurax lotion and Atarax, I got them from the doctor on prescription, I hope this helps you.


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## Mike58

Carol,
My appointment with the Rheumatologist went well.  She took about an hour with me which I thought was unreal for any doctor to spend that much time with a patient.  They took blood for the RA test as well as other inflammatory test markers.  They also took a series of xrays and even gave me a cd copy to take to my Neurologist.  The doc thinks I have IBD related arthritis even if I am in a remission.  She is going to call my GI doc and discuss increasing the Remicade dosage which is one way to battle the arthritis.  
She is interested in my lower back where my sacroiliac fused.  I will see her in 2 weeks with results.  I must say, I was very impressed with Dr. Annmarie Whiddon.  She is the type of professional we all seek.  Finally, something to smile about!   
Mike


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## dave13

It's great you have something to smile about! A Dr.who is caring as well as competent can really help.I wish it was the norm and not the exception when you find such people.

When I went to the ER(not yet knowing I had a blockage and CD)I was in so much pain.I was scared.The first medical person I dealt with was an ER nurse.She was an angel...very professional and very caring and kind.She shops at the store I work in and she always finds me to see how I am doing.I can't thank her enough.She was very good at her job and still had compassion for the patient.

I just added that to show there are good and caring people out there.I feel these people make our journey go smoother by lessening anxiety and showing compassion.They see us when we are so vulnerable.

I hope things continue to go better for you!


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## maggiesfour

I just posted this in the "My Story" section too. I am so new to this. Sooo...Hi there, 55, F,  and new to this forum. 

Was diagnosed with Ulcerative Colitis on my 53rd birthday, and after last colonoscopy 10.13 was told Crohn's colitis. I have been very blessed my entire life, no illnesses, no health problems, or weight problems at all. Very healthy fit woman. 

Prior to taking a plane flight, a person bumped into my mouth and knocked my upper right eyetooth. Upon landing there was a slight pain by my tooth. Stopped by an ER room to have this checked out as I was due to fly again, within 24 hours, and they gave me some pain meds and antibiotic and told me to check in with my dentist when I got home. Flew home, and the next morning woke up with a horrid swollen face, and a 105 fever. 4 weeks of antibiotics (I had only taken them twice before for dental work) and probiotics. The last antibiotic was Levequinn. I lasted two days on that drug, and three days later was diagnosed with Ulcerative Colitis. For 12 months Pain and blood. In 18 months, a total of 11 months of hospital stays. A truly unbelievable experience. I have been on every drug, and was on Prednisone for 10 months. In July of 2013, I had my gall bladder out, my appendix out, and kyphoplasty performed on my L2. By August I had broken L1-L5, and two additional bones in my thorastic region due to Severe Osteoporosis. 

I still can't believe it. Its all so overwhelming. I have been in remission since July '13, however have been dealing with the bone issues. I am so incredibly fortunate that as of December 2013, the x-rays shows I am in Osteopenia. 

I am on Remicade, 3 probiotics, calcium, and strontium. I am still exhausted. LOL But coming out of the fog, I think. This is taking quite a while to find out what my new normal is. I love my GI, he is my 5th, the others were all fired. 

I had a colonoscopy and a dexascan done at 50, thank goodness, to compare, although my colon was horrid. I am in full remission and have even gained 15 lbs, which is great. It was always such a fight to keep weight on as in 12 hours I could loose 7 or 8 pounds.  

I am single, have four girls I have raised all on my own (two are still in college) and I work in a stressful industry freelance. As I was packing off my youngest to college, I was filling out my dating profile as a gift to myself for my birthday, and that night was the end of those thoughts.

I am glad to be on this forum, and on this section, over 50 and diagnosed. I feel like I have been Punked soooooo bad. LOL Looking to make some new friends, and share this new normal. 

I have been on remicade for almost a year, just got my last infusion on Friday, and still can't get off the couch! LOL 

I am also weaning off of oxy's now. I am moving so much better, and in the last month alone have much less pain in my back. 
Thank you for taking the time to read this.


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## dave13

Welcome Maggiesfour

UC diagnosis on your birthday?Talk about a b-day surprise you could do without.I had a resection the Monday before thanksgiving and diagnosed with CD the day after thanksgiving.Timing is everything.

It's great you are in remission.I am currently in (surgical) remission as well.It takes awhile to come to terms with our new normal.The forum is a great place to help with this.Everyone is patient and willing to share there knowledge.

Crohnies helping crohnies!


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## maggiesfour

Thanks Dave13.  I appreciate the welcome.  With your surgical remission, are you on any meds? Gosh, Thanksgiving!! 

Does the fear ever go away? I understand, my onset was severe, ridiculously. With in three days of being sick, I had a picc line...and it only got worse from there.  I foggily remember one day, early on, a nurse asking me, well, what do you normally for constipation? (they were trying to give me a quick prep) and I looked at her nuts and said, I never had constipation!! 

I told me kids, as the second one looked at me and said, So ma...you always said, take care of your body, and your body will take care of you. I said, Well, the good lord decided I had a few more lessons to learn, and he and to look long and hard to pick this disease. (there went my great lesson on staying healthy away from drugs and drinking, lol.) All I am is doped up on drugs, hehe. I never did any drugs in my life. 

I am still trying to find out the difference between Crohn's colitis and UC. My DR said since he found four polyps in my lower bowel, its Crohn's. All my brothers and sisters have polyps, but no IBD. I am so confused. LOL The confusion goes great with the brain fog. Thank goodness I have habit to rely on!! 

I see you belong to fitness and exercise. That is the one thing I am looking forward to. One of the things that was devastating to me was the severity of my illness at the onset. I was so strong and in such excellent shape, and within weeks became totally atrophied and stayed that way, due to the osteoporosis. I am so fortunate, because my doctors trusted me to not go on any osteo medication. WE fought about it, but they trusted me. The 6MP I was on at the time, caused weeks of vomiting, and one day, as I was vomiting I just started breaking bones. I firmly believe that if fed well, with time my bodies memory will kick in. And it is. In two weeks, I will be able to start gentle exercise with resistant bands. Fortunately I am a walker, but the 30 minute limit, 3 times a week, with no weight, is making me nuts. My recent weight gain of 15 pounds is so exciting, as I know my body is really in remission, but now I look like a short little italian lady!! While i am grateful to be alive, I am now impatient. Also, I am finally going back to work, and I work in a business where, no one will know of my illness, and I need to keep it that way. However, there is no way to explain how I look, but I am sure somehow my humor will kick in and come up with something. I think I may go with something along the lines of ...lounging poolside, being fed peeled grapes and chocolate!

Thanks again dave13.


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## dave13

Hi Maggiesfour

I take 500mg of Pentasa twice a day and I use cannabis.These are my only meds..

Does the fear ever go away?...yes!! In my opinion.I am still very new to my new normal.I have made my peace with the possibility I could be slammed with something unexpected any day.Knowing something can happen helps me prepare.I could be in remission for twenty years or in the ER tomorrow.

Check out the resources part of the forum.Lots of info to be found.

Go slow with fitness! Take your time and don't over do.I over did my first day home from my resection,wasn't thinking and lifted something I shouldn't have.Hernia!! I had to wait for the resection to heal enough until the inguinal hernia could be tended to.It put me back several weeks recovering from an additional surgery.

'We are all different' is something you will hear a lot.The reason is because it is true.We are all different..and that is what makes the forum a great resource.


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## maggiesfour

Thanks Dave13.  I am one who has been there and done that with "everything."  Including diet, which is why I am on remicade. I even spent three months on total bowel rest. That is what landed me in for remicade. I got it fast and furious...just the way life is for me!! HA!

My fear is not only that it will come back but what is working won't work again. I see this time and time again, on a couple of other boards I am on. (For some reason I only just found this one, and like it!!) 

Fortunately, I have been walking regularly for three months. And I will start slow. The fact is, I will never know how my bones are, lol. But I know I am capable of so much more than what they are telling me. If I have any questions, I know who to ask!! 

Thank you so much Dave.


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## Allison M

Hey maggiesfour! I'm new to this too, and 57. You have had one hell of a ride! I hope things go easier for you! Mine has been rough too, but it took 4 years to get diagnosed. 
I think we go through ALL the stages...fear, anger, bargaining, etc. I keep telling everyone that acceptance has to be somewhere along the continuum,(I hope, hope, hope)! 
I liked Dave's answer too. He is a bright ray of help and hope! I'm going to start biologics next month, and I'm praying that makes a big difference.
Just wanted to say hi to you, dave13, and everybody else! I hope you are having good days!


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## maggiesfour

Hi Allison, 

I am really lucky, thank you. I cannot imagine what your four years have been like. A huge hug to you. I don't know what the answer is, I just keep getting up every day, and moving forward. If I take too long to think, I become overwhelmed. 

I start work in a few weeks. I was sick for a year, and worked mostly from my hospital bed (yes, I am soooo lucky) on disability for a year, and out of work for an additional  6 months. I am starting from $$$$ zero again, and that is a tough pill to swallow. 

I am looking forward to happier times. And I can't wait to get off pain meds. This is a battle I never thought I would need to go through. ughhhhh. 

This board will be so helpful! Pleasure to meet you Allison. Best of luck to all of us.


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## Whit

Hello everyone,
I was diagnosed at age 68 when I hit the emergency room with a partial blockage. This sounds like the group for me. I am currently tapering entocort and have started methotrexate injections which are supposed to dampen the inflammation in the last 4 inches of my small intestine. Hope it works and the side effects aren't too bad. This was prescribed by a very good GI doc after a second visit to the emergency room in December 2013.
I think I've had Crohn's my entire adult life though it wasn't diagnosed until recently. I also think diet is very important since we must also watch for high cholesterol, type 2 diabetes etc.
I am now on a moderate fiber diet with juicing vegetables and fruits. I think you have to have some fiber for normal stools and bowel movements. Normal for us is not the same for the rest of the population out there of course.
I too was mostly healthy until the Crohn's diagnosis and it has taken me two years at least to come to terms with living with a chronic disease. Thanks for starting this group.
Whit


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## Mike58

With these diseases, I've learned that the only thing you can count on is change.  Met with my arthritis doc this past week and the tests they did confirmed IBD Arthropathy.   All of my joints are in pain and it is now hard to sit, stand, and walk.  She discussed my case with my GI and they took me off the Imuran and put me on Methotrexate injections.   It's not bad since I only have to give myself that shot once a week.  My Diabetes is still uncontrolled and that doc now has me on a base insulin injection of 17 mls 3 times a day.  I feel like a human pin cushion.   They also put me on Celebrex for the arthritic pain.  Hope it works.
Crohn's seems to be in remission at this time.  D is still present.  GI doc still can't figure that one out.  
Hope everyone is coping,
Mike


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## Whit

I agree with you that the methotrexate shots aren't bad. Good luck.
Whit


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## dave13

I agree with you,Whit.I may have been diagnosed at 50,but look back and see a pattern that wasn't obvious before.I feel I had CD long before I was diagnosed.

My blockage occurred at the same time I was going through an extremely stressful point in my life.I feel the stress just brought to a head what was already slowly building up.

Change is the only thing we can count on...very true Mike58.Our new normal can be different day by day...hour by hour?I hope you have a smooth stretch soon and it's good to hear you are in remission.

The 25th of this month will be six months since my resection...it has felt a lot longer than that.I was operated on 3 days before Thanksgiving and it seems like years ago.I'm fortunate to be in remission and seem to have a handle on my safe foods and my diet.I try not to give in to the paranoia of wondering when I'll get whacked again by CD.I try to define the line between being vigilant about my new normal and obsessing about it.The lines blur at times.

I know we are all different and I will see how this unfolds for me.I can't imagine a day when I will not have CD in my thoughts.I'll try to be vigilant and not paranoid.

Sorry about the rambling...the 6th month of being in remission is a mile stone for me.I made it six months...hopefully I can say the same thing at one year!

Keep the faith everyone!  Dave


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## Whit

Dave,
My mental state is the same as yours-wondering when the hammer might fall again. I am lucky that the University of Virginia offers a course called MBSR-Mindfulness Based Stress Reduction- and it is helping me get a handle on the paranoia.
Regards,
Whit


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## suggi

Hi all - as a newbie not sure if I am doing this correctly.  I was diagnosed in 2001 with Crohns after 8 hours of bleeding - just pure blood.  Was put on Prednisone for a year with Culturelle and Omega 3 and then on to Librium 5mg and Librax as I had IBS also.  The Prednisone made my spine go down to 10.9% below fracture level.

I was in remission for quite a few years and then got a fissure and at age 66 (now 76) also became allergic to rubber so no "scopes" as there is rubber in the bends. I do have some mild Crohns episodes again but nothing major and also now have a rectal prolapse from straining as I try to keep on the constipated side although can go 10x/day often (balls).  Diarrehea makes me bleed!   My GI doc is retiring and said no one is going to give me Librium and Librax as it is not standard practice.  He also is letting me try 1.5 mg of LDN to see if I can tolerate it.

How can I convince a new doctor to let me continue taking Librium and Librax and LDN.  I am even afraid once they find out I can't be scoped they will show me the door.  My GI doc is 78 and has a dinasaur rigid sigmoidoscopy with no rubber that he does in his office as my Crohns is in the sigmoid part of the colon and every one else just uses the hospital flexible colonoscopy to look inside.

Is there any hope of finding a new GI doc.  I am also allergic to all the other IBD meds.  In fact, I am allergic to all antibiotics except 2 and many other drugs.  I really need advice as I am scared.  My doc said I will get worse if taken off the Librium and Librax and my PCP said she would be willing to give them to me short term but I have to find a GI doc as she will not keep prescribing them.

Thanks for any suggestions how to talk to a new doc under the circumstances.


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## dave13

Welcome to the forum Suggi

Does your current Dr. have any suggestions for a replacement? Have you told him your worries and concerns?

Is traveling an option for you?If a Dr. can be found that is not local,but is someone you trust,are you able to get to another city that is not too far?This is something I have to consider where I live.

Good luck

Dave


----------



## suggi

Dave13 - Thanks so much for replying.  I wasn't sure I was doing this correctly.

Yes, I have spoken to my retiring doc and he just wants out and does not really seem to care about anything anymore.  He has cut his hours down from 5 days/week to 3 days and now to 2 days before leaving end of June.  Hard to even get in there.

Really would like to stay in same hospital area but have an appointment with another GI doc a few towns away that got some good reveiws on healthboards and vitals.com but is connected with a hospital that is not that great.  I can not go into Boston anymore or I would try one of those doctors.  Easy to get around when I was younger but traffic is worse and always construction and I would be a wreck if and when I got there.  The train is an option but super expensive and involves a lot of train changes and not good if you have a Crohns problem anyway.  That is another reason I like close to home.

Just wondered if anyone had a suggestion how to talk to a new doctor and not sound condisending about wanting to stay on the drugs that are working for me (mostly).  Have kept a major setback all these years so really scared.


----------



## dave13

Hi Suggi...you are welcome.Helping each other is what the Forum is all about.

If you want my two cents worth about talking to doctors...I jot down questions and concerns in a notebook as they occur.I bring the notebook with me to my Dr. visits.When I am one on one with the Dr. I refer to my notes.I find it helps make the meeting more productive.I try to take advantage of being in the same room with my GI because the opportunity is there.Even if I get a "I'll get back to you" it makes the Dr. aware of a concern.

I am new to CD and am fortunate to have a GI that actually listens.He puts his tablet away and talks with me.I see him in 4 weeks for my next visit.Tomorrow is my six month mark of my resection and being in remission.

You can be assertive without being aggressive.You are not asking about a hangnail...you are seeking needed information and treatment.Let your new Dr. know what has worked,be honest and open.

Patience can be the hardest thing to exercise.There are reasonable times to wait for answers.It is up to us to tactfully remind our Dr.'s offices to pull the thumb out from time to time.

My rambling two cents worth...good luck!


----------



## Grumpy1

So....just a quick note and question.  Tried Remicade - am allergic to it.  It caused something called serum sickness - not pretty.  My GI is suggesting Humira and I am going through the process to try it although I am pretty nervous at this point.  The Imuran caused pancreatitis and caused my gall bladder to become infected and inflamed and then the Remicade and I'm really worried about the Humira - I think the cure is going to kill me.   

Anyone have any advice on the Humira and what to do before and after treatment?  Would really appreciate info.


----------



## LodgeLady

Grumpy1 said:


> So....just a quick note and question.  Tried Remicade - am allergic to it.  It caused something called serum sickness - not pretty.  My GI is suggesting Humira and I am going through the process to try it although I am pretty nervous at this point.  The Imuran caused pancreatitis and caused my gall bladder to become infected and inflamed and then the Remicade and I'm really worried about the Humira - I think the cure is going to kill me.
> 
> Anyone have any advice on the Humira and what to do before and after treatment?  Would really appreciate info.


Hi Grumpy, my short experience with Humira was not good. I had other illnesses going on but I think it immunosuppressed me too much where I got the flu, pneumonia and a whopping asthma attack all at the same time! Spent 3 days on the hospital and a month recouperating. I have not gone back on it although my new specialist may have a different opinion.


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## Allison M

I tell you the truth,  I quit my chemo, which pisses some people off, but..... Sometimes you have to listen to your self. I am going to a supposedly big time Crohn's doctor tomorrow, and maybe it will be better, but this has been the most haphazard, half-ass plan of care, I've ever seen in my life!  And I was a nurse for a looooong time. I am not even taking my records. I want to know if he's willing to make me feel better and GET better, he's thinking about me and knows my case. I've been worried about Vit B-12 because I had little symptoms. Well I didn't sleep for 5 nights and went bat-shit crazy and broke 2 ribs falling down. The lab showed I had almost NO B-12, and I was given mega-dose to take. I slept 16 hours and woke up with a toothache and a pain in my left side.  I poop on myself ALL the time, thank GOD no one knows. I'm the skinniest I've ever been and people say "you look great". Normally that would be great, I've always been a chubby girl. But I'm 10 pounds above the weight I was in 2nd grade. Is that right for a 57 y/o woman? I SAY DO WHAT YOUR HEART AND SOUL TELLS YOU. F' Em. You've been keeping yourself alive for at least 50 years. THEN......FIND A GOOD HELPER (doctor) WHO WILL DIRECT YOU, AND ENJOY THE LITTLE THINGS WHEN THEY SHOW UP.


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## LodgeLady

AllisonM love your candor!! I too am seeing a big time Crohns specialist, my appt. is in 3 weeks. I am finding that this disease is one of the worst to accurately diagnose and treat. No treatment is the same, no testing is 100% definitive, no drug seems to work forever. Testing is not always conclusive and ALL results are subjective . What kind of medical plan does that leave us?

I am tired of trying this, trying that , waiting and seeing if any of it works. A lot of this medication is very toxic and I don't like the haphazard way docs just want to throw you on it to see if it works.

I can tell you I will never be on Humira again, I don't care how great it works for some. And no way am I even considering Remicide. All of my research so far shows me that very few gain relief and hardly any can stay on these drugs for very long without building up antibodies.

AllisonM I too worked in the healthcare field, 22 years in Respiratory therapy. I thought I saw it all until I came upon this Crohn's disease.


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## maggiesfour

Lodge Lady, I so understand what you are saying. There are two differences with me. First, I walk between Ulcerative Colitis and Crohn's. They say I have Crohn's Colitis. I have 2 polyps in my lower bowel, that had inflammation on them. I have two brothers and two sisters, and they all have polyps, but not inflammation. If I have UC, and everything is inflamed down there wouldn't a polyp be too? The second being, I have never had an issue with my tummy or my bowles. I never even took a laxative, other than for my colonoscopy at 50, which was perfect. 

With this,you hit the ground running and fast. I have been through so many doctors, all at the top of their field between UCLA and Cedars Sinai. The reason I stay with my current doctor is because he listens to me, and hears what I have to say, and will take this into consideration with my treatments. I am on remicade, but it saved my life, so I am okay with it. Honestly, starting Vancomycin, and Remicade the same day, and symptoms stopping completely 48 hours later, including fevers, we are not sure if it was not a really bad case of cliff which I had for ten months. 

I did have doctors throwing stuff at me, as so many of our tests are false negatives, false positives, and we are all different. Our doctors are not researchers and there are not enough of those to go around. At least hear on the west coast, the GI offices are overwhelmed started with infants going to the elderly. Its nuts. I am just so grateful I, and my family have always eaten well. 

Something has to change though. The food industry is out of control I occasionally will drink Almond milk, and Rice Milk as I only do cheeses. I, however, have to still read labels, as I cannot consume carageen. No one should!! One of our markets out here, has a line of "healthy" foods, to try and out beat the local WF's and most of their products have this same ingredient. What?? 

I admire all of us. We deal with so much. Yes, we know in the over 50 crowd, most have stuff to deal with. This though? Who would have thunk? 

Have a good day out there today.


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## carbuncle

I certainly agree with all these sentiments having tried Remicade, Humira & Cimzia.  They all worked...for a few weeks then zippo!!!  Back on predisone.


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## maggiesfour

Interesting thing happened to me today, at the gas station. 

I am pumping gas, and a new F210 (?) huge truck backs into my car, and has a hitch on it, and the hitch dents my license plate. The only reason the truck stops, is because I am banging on the tail end, yelling Yo! YO! in my best NY. A young man pokes his hand out (the ring finger is gauze wrapped tremendously) and he yells out, kind of sheepishly, "It's hard for me to drive with this." And I sadly respond, "maybe you shouldn't be driving..." in my best unfortunate NY. So I go back to leaning on my car, and watch him get out of the car, and realize he is maybe 17. He has sunglasses on and this kid is a mess. He can't figure out the right way to pay for the gas at the right pump. I, having raised four kids on my own, realize this kid is completely emotionally distraught and is going to loose it any second. Seriously. I walk over to him, put my hand on his shoulder, and he turns to me and starts crying. I put my arms around him and hug him, and he lets loose. For like ten minutes, sobbing. Okay...so...he calms down a bit, and I ask him to tell me what the problem is. He says, my dad has cancer. I said, what kind, and he said, Colon. Pause...so I said, what happened to your finger, and he says, he slammed one of the hospital doors on it and broke his finger. He was in visiting his dad, who just went in yesterday. Then he starts crying again. I asked what hospital, as I recognized his visitor name tag on his shirt, and it was the hospital, that I spent four months in, in 2012. I know all the IBD doctor's there. I fired them all. 

So he calms  down and in his amazing young man way, just starts spilling it all. His dad has an endoscopy, a colonoscopy, and he was "clean as a whistle." A few months later, he ends up with a blockage, (last week) they take either a catscan or an MRI, he said some test, and found cancer of the colon... and then he started, "It's not fair, its not fair..." 

We spoke awhile, I gave him some advice for him to give to his parents, I gave him my card,made sure he was okay, and then sat in my car. His dad is 52. 

I am hopeful for him.


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## LodgeLady

Wow that is an incredible story. What an act of kindness despite being a victim. We sometimes forget the about the person and just focus on the act.  What a strong person you are!


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## Allison M

crone kh said:


> Does anyone here have a phobia related to colonoscopy? I was trapped in the hospital for my last one. Am afraid my gastro will fire me as a patient soon.


I've got to have one Friday. On the DIY program I am on with my gastro, I was just told to use a prep. What did you do? Which do you use? Thanks. I've narrowed myself into a 16 hour window, so anyone please advise! I have Crohn's, btw. Happy time to all.


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## Allison M

Alright, I've got a funny. I've lived in my sweet little neighborhood for 18 years and have worked with my husband to make it our LITTTLE paradise. Well, my neighbor  dan has terrible Parkinson's, probably 65....you know him....a nice, unfortunate guy. When he first got his Parkinson's so it showed, he gave me a FULL-ON mouth kiss while I was working on my rose arbor in the front yard. I ran in and made my granddaughters hide me, haha. I decided it must have been on his bucket list, heehee. Well, here it is, 3-4 years later, I'm out planting a rose (???) bush, and here comes super shaky Dan, God bless him, and he say...."I think people are starting to be suspicious of us!"!! He thinks we have somet.hing going! Dear LORD? How did this happen? I poop on myself 24 hours a day! I'm telling you, hold your heads high girls. We still got it, haha!


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## carbuncle

Try 4 quarts of gatorade with a large bottle of Miralax split evenly in the 4 quarts.  Drink a pint every 15-20 minutes.  Produces mild clean out and taste is not toooo bad.  (G2 if diabetic)  Cheers!!!


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## Allison M

Praying for you.


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## crone kh

Hi, all
Am not sure this is truly helpful, but didn't want to take a chance. Have been using GoodBelly Probiotic Fermented Coconut Water for a few weeks. This item is available at your friendly supermarket in several flavors. I've only tried the coconut and it only contains one gut organism...lactobacillus...far from replacing all the normal gut organisms. HOWEVER, it actually seems to help (me, at least)! Have only been taking half the recommended daily amount for fear of starting up a new allergy. My use of loperimide is down considerably.
kh


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## dave13

I had something odd happen.I was standing and talking to a friend.I suddenly got a sharp pain on my right side,belly button height but more to the right.It was quite painful and lasted a few seconds.

That was four days ago.I hadn't experienced it before and(so far)it has not happened again.Any thoughts?


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## LodgeLady

dave13 said:


> I had something odd happen.I was standing and talking to a friend.I suddenly got a sharp pain on my right side,belly button height but more to the right.It was quite painful and lasted a few seconds.
> 
> 
> 
> That was four days ago.I hadn't experienced it before and(so far)it has not happened again.Any thoughts?



I attribute those kinds of pain as gas pain. I often get those sharp pains, come and go.


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## dave13

It was so out of the blue,startled me,I guess.I can't recall eating anything out of my usual diet that would cause gas.Pentasa sometimes does it,but usually I fart.I frequently have to suppress a smile when I talk about passing gas,I'm so juvenile at times.  I revert from 50 to10.


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## LodgeLady

dave13 said:


> It was so out of the blue,startled me,I guess.I can't recall eating anything out of my usual diet that would cause gas.Pentasa sometimes does it,but usually I fart.I frequently have to suppress a smile when I talk about passing gas,I'm so juvenile at times.  I revert from 50 to10.


Haha


----------



## fozheart

10 is good!  This probably won't help, but I will put in my 2 cents!  I had my resection, reversal and then hernia repair (same poor incision site), within 6 months.  Then the healing finally began. About 6 months later, I started to have some unusual pains once in a while, around the surgery/incisional sites.  It felt "different"... sometimes sharp with a type of burning sensation.  One GI doctor (who I fired), said that it could simply be that the nerves were waking up, and that could be the cause.  I would have been happy with that, just knowing that it was normal and would eventually go away.  But, before I could bat my eyes twice, she stabbed me with a quick fix of probably a lidocaine based big needle!  This put my surgical area back into a numb state for 4+ months and I did not have those funny pains.... until 4 months or so afterwards.  They were icky and hurt, but I was relieved to know that it was just the nerves waking up..... and they went away eventually.  

I have no clue if this is anything like what you are experiencing. If it is not, I apologize for rambling!  Perfect timing that you are going to the doctor on Monday, so he can evaluate the situation.  This Crohns/GI disease/disorder thing is so scary, (at least for a blonde), as even after 4 years, it is difficult to know when specific pain is ok/safe to put up with/just keep my mouth shut and just deal with it, OR- if it is a DANGER pain- an obstruction? an infection?  A soon to be perforation?!  My fingers are crossed that your pain will be explainable and easily fixable, rather than a flare or a set-back!


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## dave13

I'm hoping it is nothing to worry about.Since my blockage and resection I have been vigilant about how my 'guts' feel.I have not felt any other pain or discomfort other than what I posted.I have not experienced any symptoms I experienced prior to my blockage.

I'm anxious to talk with my GI tomorrow.I have only seen him once,three months after my resection.I liked him.He seems very knowledgeable about IBD and open to conversation and my concerns.He was the first Dr. who put his computer away and actually made eye contact and talked with me.


----------



## cleuger

I was diagnosed October 2012 I was 49 but 50 now will be 51 in December. For years I had been told I had stress induced IBS and even though I had crohns/colitis my family doctor still believes I have stress induced IBS.  If I get stressed really bad im in the bathroom with multiple trips. For years about 20 if not more I have suffered with bowel issues. I knew there was something very wrong when in 2008 I was horribly anemic I remember going to the bathroom and the toilet being full of blood I couldnt even climb stairs with out feeling dizzie. The the bathroom trips increased to around the clock I was still bleeding but though I had hemorrhoids or something never in a million years would I have thought I had crohns never. what I have most hated about the disease is the pity I receive from people when I tell them what I have. I never want to be pitied ever.


----------



## dave13

Hi Cleuger

Sorry you are having it so rough.I agree with you about how some people treat us.I get uncomfortable when I meet someone I knew 'pre CD'.I am in remission now and feel pretty good.If I meet someone from 'before' all the cliches come out..."you lost so much weight!","your so skinny",etc..I am not skinny.I am skinny to them.I was 35+ pounds heavier than I am now,which I do not want to gain back.

This may make you chuckle.I had a friend ask me if I was contagious.I thought he was making a joke,he was serious.

What we really need from people is support and some understanding.


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## maggiesfour

clueger, love your name!! Seriously, what is Crohn's Colitis? I had colitis when I was diagnosed and on two colonoscopies ago, there were polyps, that had inflammation on them, so my GI said that meant I had Crohn's Colitis. My last colonoscopy showed no inflammation anywhere. I only had inflammation in my lower bowel. I am going on July 11th for another one, as the Pain and Exhaustion from the Remi is out of control. So they are thinking of taking me off it. I am so confused most days about all of this, although I have researched extensively, i get lost at ...Crohn's colitis. Ugh...is there really such a thing? I love my GI, I fired many before him. LOL He just tells me not to worry, I'm in remission, with Remi. But if they are taking me off Remi... HA! Happy Summer everyone!


----------



## LodgeLady

@maggiesfour, this whole thing about changing diagnosis is driving me nuts. First have inflammation on one scope at terminal ileum, do a ton of drugs. Get my gallbladder out , now don't know if all symptoms were from gallbladder. ( Uh, no cause I've had these symptoms for 20 years  ), so now doesn't know what to think. Last scope showed no inflammation but says all my drugs could have cleared it up. Now off to a specialist!! I'm praying somebody gets a diagnosis and sticks to it!! Meanwhile I'm on Entocort have good and bad days.


----------



## suggi

Maggiesfour - I was told first I had colitis and then years after was told it was Crohns and now it is Crohns colitis.  Wish they would make up their minds.

I can't take regular Crohns meds as have become allergic to them and am only on Librium and Librax 4x/day.  However, my GI doc is retiring and I can not find any doc to prescribe Librium.  Have been on it since 2002 and have had a few flares but no more bleeding for 8 hours like in 2001 and then on Prednisone.  Of  course my bones went down.  Now 14.7% below fracture level.

PCP knew for years I was taking Librium and now when I asked her to prescribe it for me she was yelling about how it is a bad drug and I won't wake up someday like Michael Jackson and I have been on it so long it is part of my DNA and she wants to wean me off to go on Ativan but if I wean off I will get another bleeding attack.  I have been on the same dose all this time.  She said she does not know how to wean me off either and I could have a seizure and stroke.  Yes, I am elderly but it does nto seem to be affecting me = my liver and kidney enzymes are OK and I am not falling down so for goodness sake - if it aint broke don't fix it.

Does anyone have any suggestions about how to find a doctor in MA that will prescribe Librium for Crohns??

Thank you.


----------



## maggiesfour

LodgeLady said:


> @maggiesfour, this whole thing about changing diagnosis is driving me nuts. First have inflammation on one scope at terminal ileum, do a ton of drugs. Get my gallbladder out , now don't know if all symptoms were from gallbladder. ( Uh, no cause I've had these symptoms for 20 years  ), so now doesn't know what to think. Last scope showed no inflammation but says all my drugs could have cleared it up. Now off to a specialist!! I'm praying somebody gets a diagnosis and sticks to it!! Meanwhile I'm on Entocort have good and bad days.


Wow, I had my gall bladder and appendix out, but I think it was from the 6MP. But, what is Crohn's COLITIS, what does this mean? grrrr....But, how bad are your bad days? What other meds were you on that they think they put you in remission?


----------



## maggiesfour

suggi said:


> Maggiesfour - I was told first I had colitis and then years after was told it was Crohns and now it is Crohns colitis.  Wish they would make up their minds.
> 
> I can't take regular Crohns meds as have become allergic to them and am only on Librium and Librax 4x/day.  However, my GI doc is retiring and I can not find any doc to prescribe Librium.  Have been on it since 2002 and have had a few flares but no more bleeding for 8 hours like in 2001 and then on Prednisone.  Of  course my bones went down.  Now 14.7% below fracture level.
> 
> PCP knew for years I was taking Librium and now when I asked her to prescribe it for me she was yelling about how it is a bad drug and I won't wake up someday like Michael Jackson and I have been on it so long it is part of my DNA and she wants to wean me off to go on Ativan but if I wean off I will get another bleeding attack.  I have been on the same dose all this time.  She said she does not know how to wean me off either and I could have a seizure and stroke.  Yes, I am elderly but it does nto seem to be affecting me = my liver and kidney enzymes are OK and I am not falling down so for goodness sake - if it aint broke don't fix it.
> 
> Does anyone have any suggestions about how to find a doctor in MA that will prescribe Librium for Crohns??
> 
> Thank you.


Crimmie Suggi, if they take you off Librax and put you on Ativan, we will surely be calling you MJ. What is wrong with some of these doctors. I do believe for the most part they mean well, they are just clueless. How about this? Ask your Dr. to refer you to a Pain Specialist. That's what who I go to now, and the Pain Specialist should keep you on the Librax, as they hate to mess with what works. (they are all Anestesiologists who were thrown into the office)  That should help you. What are you doing for your bones? You need to feed them...OP is reversible. Happy Wednesday.


----------



## Grumpy1

Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's.  Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's  (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.  
I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month.  Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work.  Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode.  Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI?  Helloooooo is anyone home in there - really?   Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly?  Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now.  Or will you ever get better - better than what?  
My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.  
Okay...done ranting now.   Will go back to being calm and happy and smiling at the lunacy.


----------



## Laughngirl

cleuger said:


> I was diagnosed October 2012 I was 49 but 50 now will be 51 in December. For years I had been told I had stress induced IBS and even though I had crohns/colitis my family doctor still believes I have stress induced IBS.  If I get stressed really bad im in the bathroom with multiple trips. For years about 20 if not more I have suffered with bowel issues. I knew there was something very wrong when in 2008 I was horribly anemic I remember going to the bathroom and the toilet being full of blood I couldnt even climb stairs with out feeling dizzie. The the bathroom trips increased to around the clock I was still bleeding but though I had hemorrhoids or something never in a million years would I have thought I had crohns never. what I have most hated about the disease is the pity I receive from people when I tell them what I have. I never want to be pitied ever.


Wow, to hear your story amazed me.  That is almost exactly how it went for me.  I was just diagnosed 2 weeks ago.  And LOL - I feel :ybatty: most days too!


----------



## Laughngirl

Grumpy1 said:


> Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's.  Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's  (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.
> I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month.  Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work.  Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode.  Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI?  Helloooooo is anyone home in there - really?   Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly?  Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now.  Or will you ever get better - better than what?
> My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.
> Okay...done ranting now.   Will go back to being calm and happy and smiling at the lunacy.


Grumply, thank you for that!  I was laughing so hard I got strangled.  :rof:


----------



## LodgeLady

Grumpy1 said:


> Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's.  Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's  (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.
> 
> I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month.  Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work.  Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode.  Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI?  Helloooooo is anyone home in there - really?   Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly?  Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now.  Or will you ever get better - better than what?
> 
> My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.
> 
> Okay...done ranting now.   Will go back to being calm and happy and smiling at the lunacy.



Hahahahahahahah....( wiping happy tears away).  I don't know if your post was meant to be funny but I found it hysterical ! ( I love sarcasm by the way) Oh it never ceases to amaze me how people just don't get this disease. Thanks for the laugh.


----------



## Grumpy1

Laughngirl,

Was not my intent to strangle you - just to supply some levity to the lunacy.  Thank you for the mental image though, made me laugh -  not so hard that I got strangled just started snorting - not a pretty picture by the way a 53 yr old sitting at her desk alone in an office snorting with laughter - the guys outside my office were probably considering calling those people with the little white coats.


----------



## Grumpy1

LodgeLady said:


> Hahahahahahahah....( wiping happy tears away).  I don't know if your post was meant to be funny but I found it hysterical ! ( I love sarcasm by the way) Oh it never ceases to amaze me how people just don't get this disease. Thanks for the laugh.


You are very welcome!:rof:


----------



## maggiesfour

sticking hot knives...


YUP! I get why others don't get it...we all do. It's just really crappy, lol. But I still do not understand what Crohn's Colis is. Colitis is continuous disease, Crohn's jumps...Colitis you can get surgery, and its done. Crohn's you can get surgery, but it will still keep growing in various places...Yes this is a sophomoric description but it works for me. What is Crohn's Colitis? 

***Gosh I was laughing so hard...at work...oy!


----------



## LodgeLady

maggiesfour said:


> sticking hot knives...
> 
> 
> 
> 
> 
> YUP! I get why others don't get it...we all do. It's just really crappy, lol. But I still do not understand what Crohn's Colis is. Colitis is continuous disease, Crohn's jumps...Colitis you can get surgery, and its done. Crohn's you can get surgery, but it will still keep growing in various places...Yes this is a sophomoric description but it works for me. What is Crohn's Colitis?
> 
> 
> 
> ***Gosh I was laughing so hard...at work...oy!



Well my doctor explained that Crohn's Colitis is the term that encompasses the whole disease entity. Crohn's or UC defines what type of Crohn's Colitis you have. Make sense? I was just as confused after his answer as I was before, but whatever .


----------



## maggiesfour

LodgeLady said:


> Well my doctor explained that Crohn's Colitis is the term that encompasses the whole disease entity. Crohn's or UC defines what type of Crohn's Colitis you have. Make sense? I was just as confused after his answer as I was before, but whatever .


No, it does not make sense to me. In other words, with UC, you can have surgery, and be healed. You may have IBS symptoms, but, that's it. With Crohn's, that will never be the case. That is why the two are so very different. UC is only on in your lower bowel, and the ulcerations are continuous. With Crohn's, the disease can go from the esophagus to the lower bowel, and the ulcerations skip. 

Those are the true definitions. So...there is no such thing as Crohn's colitis. The inflammation is either continuous or not. It is either in lower bowel only or potentially everywhere. Soooooo...that does not make sense, what your doctor says. IBD describes the whole disease entity. Irritable Bowel Disease, which is either Ulcerative Colitis, which is continuous, and lower bowel only, or Crohn's, which is ulceration that skips anywhere from esophagus, to lower bowel. 

My doctor said...I have UC, but because I had four polyps, in the lower bowel, and those were disease differently than the long ulceration, that meant it was Crohn's Colitis. AND that doesn't make sense. 

If anyone can explain further...I would love it. Wishing you all a peaceful nights sleep.


----------



## Grumpy1

maggiesfour said:


> Those are the true definitions. So...there is no such thing as Crohn's colitis. The inflammation is either continuous or not. It is either in lower bowel only or potentially everywhere. Soooooo...that does not make sense, what your doctor says. IBD describes the whole disease entity. Irritable Bowel Disease, which is either Ulcerative Colitis, which is continuous, and lower bowel only, or Crohn's, which is ulceration that skips anywhere from esophagus, to lower bowel.


I was only diagnosed in December 2013 and am not an expert here, so the only thing I can say is I have ulcers (lots) throughout my small intestine and my large intestine.  I was erroneously diagnosed with bowel cancer and scheduled for a colonoscopy to determine where and what stage.  My surgeon called me and told me she had scheduled me an appointment with a gastroenterologist the same morning that I was to see her for my results. When I  met him he gave me my results and explained that I didn't have cancer that I had something called acute Crohn's or Crohn's/Colitis.  His explanation was - Crohn's usually only hits in one place at a time i.e. small intestine or stomach - and although it can jump from place to place anywhere from your anus to your mouth it usually only affects one place at a time - when it affects more than one place at a time, i.e. large intestine and stomach it becomes "acute" or what they call Crohn's/Colitis it makes you a "critical" case according to my Gastroenterologist because it makes it harder to control the disease because they have to alter the medications or add medications to control stomach acids or your mouth dryness or...  Frankly at the time it was all French to me and it still is.   Clear as mud right?


----------



## dave13

maybe a moderator could jump in here and lay down some knowledge.


----------



## maggiesfour

Grumpy1 said:


> I was only diagnosed in December 2013 and am not an expert here, so the only thing I can say is I have ulcers (lots) throughout my small intestine and my large intestine.  I was erroneously diagnosed with bowel cancer and scheduled for a colonoscopy to determine where and what stage.  My surgeon called me and told me she had scheduled me an appointment with a gastroenterologist the same morning that I was to see her for my results. When I  met him he gave me my results and explained that I didn't have cancer that I had something called acute Crohn's or Crohn's/Colitis.  His explanation was - Crohn's usually only hits in one place at a time i.e. small intestine or stomach - and although it can jump from place to place anywhere from your anus to your mouth it usually only affects one place at a time - when it affects more than one place at a time, i.e. large intestine and stomach it becomes "acute" or what they call Crohn's/Colitis it makes you a "critical" case according to my Gastroenterologist because it makes it harder to control the disease because they have to alter the medications or add medications to control stomach acids or your mouth dryness or...  Frankly at the time it was all French to me and it still is.   Clear as mud right?


Wow, Grumpy, okay, so first I am glad that you don't have cancer. Again, why Crohn's/Colitis, because there is Acute Colitis or severe, which I had, and then there is acute or sever Crohns. I have a colonoscopy on July 11, and I will ask for pictures if I need. If I want to go for surgery, I want to make sure, it is cleared and not show up anywhere else. That only applies to Colitis. If I have Crohn's, I won't go for surgery. Does that make sense? LOLOL That made me laugh really hard as everything in my life at this time is clear as mud. Thanks for the new expression!!


----------



## becls

Hello all.  I have been reading your posts and find them all very interesting.  I have not been on here in quite a while and I am new to this group.  I would like to ask your thoughts on my situation.  I was diagnosed with Crohn's January 2011, right before my 50th birthday, actually got out of the hospital the day before turning 50!!  Since then I have been on Remicade, which caused drug induced liver damage (had liver biopsy), had a small bowel resection, 6mp only lasting 3 days because of severe side effects, Methotrexate weekly injections for 4 months when it stopped working, then on to Humira, weekly injections, which worked for about 6 months, kept having flare up so they added Methotrexate back in with the Humira.  That lasted about 4 months then I had severe side effects from the Methotrexate and stopped that and was only on Humira which was good for about a year.  In March 2014,  my blood count dropped, April 1, 2014 had colonoscopy and they found inflammation again.   So now I am of off Humira and was suppose to go into clinical trial, but did not meet the protocol.  I was put on Entocort and Pentasa for a few weeks to treat the symptoms and would have been part of the trial but CRP levels drop and not enough inflammation, so doctors took me off those to see if I would have a flare up so they could get me into the study, after being on no medication for 3 weeks it did not happen . So they put me back on Entocort and Pentasa and now after being back on them for about 2 weeks I am feeling bad again.  I contacted my doctor because I thought I was having side effects of medication, but doctors always say it the Crohn's. They did blood test said my CRP levels not high, so they said it must not be the Crohn's and thats that.  No other comment on what it could be.  

Sorry this is so long, just want to get all in.  So at this point I am very frustrated with doctors, I have been to two "best in their field experts" and seem to end up back at my regular GI doc.  My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing.  I got thrush in my mouth and am on meds for that.  So now I am back off the Pentasa and Entocort to see if I was right and it was side effects.  I also go to an internal medicine doctor and she is monitoring all the other things.  Does anyone else ever feel like once you have been diagnosed with Crohn's you are labled as a Crohn's person and anything and everything that is wrong must be from the Crohn's?  Maybe my feeling bad is from something entirely not related to the Crohn's, but once a doctor knows you have Crohn's it is always the Crohn's and that is what they focus on.  

Thanks in advance for any input.


----------



## maggiesfour

becls, so sorry to hear about your situation. I went into the hospital on my 53rd birthday, so I know how you feel. I went through 6 doctors until I found the one I am with now, which is my 7th. 

Might I ask, what is your diet like? What type of exercise do you do? What beverages do you drink daily? What multi and other supplements do you take?


----------



## LodgeLady

Yes I do think docs attribute most of our complaints to Crohns. My GI totally missed my inflamed gallbladder which I almost had to have emergency surgery. I did have it removed and he clearly knew he missed it.


----------



## becls

Thanks maggiesfour and LodgeLady for your responses.   I usually eat a low fiber diet, not much bread, occasional salad, and rarely eat fast food.  I drink mostly water, some juices and have a couple cups of coffee a day, sometime for that extra boost to get through the afternoon.  I take vitamin e and c.  I just joined a gym and a personal trainer because I had began to feel better but got sick and missed my first appointment.  Very disappointing.  I am usually pretty active unless I am feeling bad.


----------



## rickm37

Hello all,
Trying to navigate my way around this web site still. I was dx June 2014 with Crohn's. Spent a total of over 3 weeks in the hospital. Took Antibiotics, Prednisone, Imuran through IV. I'm 54 years old and this is quite a life altering shock. I'm out of work for the first time ever, lost 45lbs, have no muscle anymore when before all this started I was in great physical shape. It's been 2 weeks since I left the hospital and my condition was slipping so I started Remicade infusions yesterday. The Remicade absolutely kicked the shit out of me last night! I was on the toilet with the most excruciating abdominal, colon pain while extreme nausea and vomiting all at the same. Has this happened to anyone else on Remicade? I'm afraid to eat anything this morning.


----------



## Grumbletum

Hi Rick. How are you feeling now? I'm sorry to hear about your diagnosis and time in hospital. What a shock and it sounds like your disease is quite severe. If you are still experiencing severe pain and vomiting, I would call your GI or IBD nurse if you have one and see what they suggest.


----------



## Doyourdream

Hi Everyone:   I haven't posted in awhile so thought I would give an update.   I went to the Mayo Clinic in March and saw Dr. Sunandra Kane.   She ordered a scope (retrograde) and it revealed a stricture that was 1/4 of the size it should be.   I had surgery on April 28th and they took out 8 inches of my small bowel and my appendix.   I go back in August for a CT  enterography to determine if there is any inflammation building up again.   I will keep you posted.


----------



## becls

rickm37-- Sorry to hear you are having such a hard time.  I got diagonsed 3 years ago and I started out on Remicade and I do remember being really tired for a few days afterwards some cramping (not severe), nausea or diahrrea but it also turned out that I still had inflammation that would not go away with treatment of Remicade.  I hope you get to feeling better.


----------



## jnette

Greetings ! Just joined the forum a couple days ago and thought I'd hop onboard with the "over 50" crowd seeing that I turned 65 this month. Whee.:drink:

So here I am. You can find "my story" initial post with the "newbie" tag over there under My Story..guess that would save me from having to repost it. :tongue:

Hope to both learn something here as well as offer support. It's important for us "pain in the arse" peeps to stick together, yes? :hug:


----------



## dave13

Welcome jnette

Your right,we gotta stick together.


----------



## maggiesfour

becls said:


> Hello all.  I have been reading your posts and find them all very interesting.  I have not been on here in quite a while and I am new to this group.  I would like to ask your thoughts on my situation.  I was diagnosed with Crohn's January 2011, right before my 50th birthday, actually got out of the hospital the day before turning 50!!  Since then I have been on Remicade, which caused drug induced liver damage (had liver biopsy), had a small bowel resection, 6mp only lasting 3 days because of severe side effects, Methotrexate weekly injections for 4 months when it stopped working, then on to Humira, weekly injections, which worked for about 6 months, kept having flare up so they added Methotrexate back in with the Humira.  That lasted about 4 months then I had severe side effects from the Methotrexate and stopped that and was only on Humira which was good for about a year.  In March 2014,  my blood count dropped, April 1, 2014 had colonoscopy and they found inflammation again.   So now I am of off Humira and was suppose to go into clinical trial, but did not meet the protocol.  I was put on Entocort and Pentasa for a few weeks to treat the symptoms and would have been part of the trial but CRP levels drop and not enough inflammation, so doctors took me off those to see if I would have a flare up so they could get me into the study, after being on no medication for 3 weeks it did not happen . So they put me back on Entocort and Pentasa and now after being back on them for about 2 weeks I am feeling bad again.  I contacted my doctor because I thought I was having side effects of medication, but doctors always say it the Crohn's. They did blood test said my CRP levels not high, so they said it must not be the Crohn's and thats that.  No other comment on what it could be.
> 
> Sorry this is so long, just want to get all in.  So at this point I am very frustrated with doctors, I have been to two "best in their field experts" and seem to end up back at my regular GI doc.  My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing.  I got thrush in my mouth and am on meds for that.  So now I am back off the Pentasa and Entocort to see if I was right and it was side effects.  I also go to an internal medicine doctor and she is monitoring all the other things.  Does anyone else ever feel like once you have been diagnosed with Crohn's you are labled as a Crohn's person and anything and everything that is wrong must be from the Crohn's?  Maybe my feeling bad is from something entirely not related to the Crohn's, but once a doctor knows you have Crohn's it is always the Crohn's and that is what they focus on.
> 
> Thanks in advance for any input.


Hey Becls, 
You have been on my mind, and then it hit me this morning. You could possibly have candida, especially because you had thrush. It fits, and then, if I may get this straight: they took you off meds, you were fine, felt find, and then they put you back on meds and you felt worse. So, this I don't understand. 

Google Candida, and see if those symptoms feel familiar to you. Two of my children just finished this process and haven't seem them look and feel this healthy since they were in high school. Pretty interesting stuff. Let us know what you think.


----------



## Whit

Becls,
My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing. I got thrush in my mouth and am on meds for that. This comment you made is true with me also. I don't have thrush though what I do have is hairy tongue which is a white coating on the tongue. I think drugs themselves cause a great deal of side effects and combined with Crohn's things canget wierd.
If you have decent health insurance then I would push hard to force the doctors to look beyond Crohn's and try to find what is wrong though I as I said, I have all the symptoms you do which is I think due to the Crohn's.  
Thrush generally is on the tongue, cheeks and down the throat. When I was at the dentist he said it was hairy tongue, not thrush, and to gargle with salty warm water three times a day and use you toothbrush on it to clean the surface off. It has helped though it will never go away. I am on 1ml of methotrexate injections one a week. 
Best of luck
Whit


----------



## polgara59

I'm part of the 50 and over crowd, having just been provisionally diagnosed last week. Looking back, I've had bowel issues for years, particularly lactose intolerance, but it was when I started having bloody BMs that I actually asked a doc about it. I had also broken foot at about the same time as I started noticing the blood, and the doc asked questions, and attributed the bleeding to fissures or internal hemorrhoids. He told me to give it a month or so. By the time I got back to him in late April, I was still bleeding, and he referred me for a colonoscopy. It took three months to get in for that, and even then, laying on the bed, the GI doc suspected an internal hemorrhoid and had me sign consent for banding. I'd been doing quite a bit of reading before the colonoscopy and I suspected ulcerative colitis. He suspects Crohn's colitis -- Crohn's because the inflammation is patchy in several areas, but seems to be confined to my colon. The blood work is being done and I need to still submit stool samples. I've also been referred for a CT scan. I see the GI guy again in September. In the meantime, he's put me on Pentasa tablets (those suckers are almost big enough to choke a horse!) and Salofalk suppositories. In less then a week, the bleeding is no longer visible. My tummy still rumbles, but I'm keeping the fibre pretty low.

I didn't know much about Crohn's before this week, and I have to admit some of the experiences I've read about here have me a little freaked. Do people always get worse? Or is it possible I've caught mine early enough that I can be maintained for a long time?

I teach junior high full time, and managed to continue with a broken foot and a bleeding behind last spring, so I'm obviously not that bad off -- I'm just hoping I can stay that way because retirement is a few years away yet!


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## Whit

You can get better. I found a great GI doc after I was diagnosed at age 68 and though my Crohn's is in the small intestine, diet. low fibre foods and a methotrexate injection one a week is bringing back to a "new normal". 
Remember to be your own health care advocate and ask lots of questions.
Good luck
Whit


----------



## dave13

Hi polgara59

Learning about what we do,and can,go through can freak you out a little.There are people in remission for years.Will you be one of them? I hope so.Vigilant and proactive are good things to be.Good luck!

I keep a notebook handy and write down questions for the next doctor appointment.I am fortunate to have a GI who returns my calls...eventually He has called me as late as 7:30 pm to answer a question,I was gobsmacked.

Don't hesitate to call your GI with questions or follow up on questions.I'm just getting use to this new normal myself.


----------



## LodgeLady

carbuncle said:


> LodgeLady,
> 
> 
> 
> About 9-10 months ago, I was having gall stone symptoms.  I had an ultrasound to verify gall stones and then was referred to a GI surgeon.  After reviewing current symptoms and ultrasound, surgeon recommended not to remove gall bladder as the surgeon had a significant number of patients where the gall bladder removal either triggered a flare or new crohns symptoms.  I decided against surgery as the symptoms had subsided.  Sometimes the stones move in and out of the gall bladder.
> 
> 
> 
> Hope this helps.



Carbuncle you were right . Four months later after GB surgery I started flaring again. Back on Entocort and Pentasa with an Upper GI to follow. And back with the Crohns diagnosis.


----------



## gtc45

louann my doctor recommended methotrexate . iam afraid of side effecta kidney and liver damage what is your experience with this drug. i was on remicade before and it had few side effects

                 gerry


----------



## gtc45

carrollco said:


> Hello! Diagnosed at 32 with extreme IBS, diagnosed with Crohn's at 56. I am sure I would have been diagnosed sooner but I refused to see a doctor or to even tell anyone about it because they convinced me it was all in my head. Oh. I just turned 59 AND started Remicade which has turned my life around.


i was diagnosed at 50 with crohns i took remicade  iam 69 . i had a resection at 65       the doctor suggest methotrexate what do u think of this drug  gtc45


----------



## polgara59

dave13 said:


> Hi polgara59
> 
> Learning about what we do,and can,go through can freak you out a little.There are people in remission for years.Will you be one of them? I hope so.Vigilant and proactive are good things to be.Good luck!


If remission is being able to eat relatively normally without cramping and D, then I think I sorta had that for a few weeks. Fortunately it was while I was out camping with family. I did learn too much fat isn't a good thing.

Then on Monday I ate something that set me off, and I've been off ever since. Last night I was wondering how I could take my Pentasa _with food_ when my guts were rolling and everything was going right through me. I made it, and today's better but still not great.

Still waiting to hear from the hospital about my CT scan -- will try to remember to call tomorrow while I'm minding a couple of the grandkids...


----------



## dave13

My understanding is there are different types of remission.I have active perianal crohns,I had a fistulotomy and three setons placed about five weeks ago.

I have also had a resection in my jejunum in 11-13.I had a SBFT in July.I'm told this test checks from the duodenojejunal junction to the ileocical valve.It took over eight hours...that's another story for another day.I was shown the images and told there is no sign of inflammation in the upper GI at this time.The sections of jejunum that were reconnected after the resection have no signs of CD and look healthy.

My stricturing CD may be in surgical remission,the penetrating CD is not.I still have active CD,just not in my jejunum.

Maybe someone can clarify the different kinds of remission and how they are achieved.I'll check the resources section in the meantime.


----------



## LodgeLady

I am wondering if remission ever means symptom free? I am giving into the fact that I will always have some occasional pain, nausea, cramp. I am willing to live with that as long as the medicine side affects don't cause other symptoms.


----------



## Jay Woodman

dave13 said:


> My understanding is there are different types of remission.I have active perianal crohns,I had a fistulotomy and three setons placed about five weeks ago.
> 
> I have also had a resection in my jejunum in 11-13.I had a SBFT in July.I'm told this test checks from the duodenojejunal junction to the ileocical valve.It took over eight hours...that's another story for another day.I was shown the images and told there is no sign of inflammation in the upper GI at this time.The sections of jejunum that were reconnected after the resection have no signs of CD and look healthy.
> 
> My stricturing CD may be in surgical remission,the penetrating CD is not.I still have active CD,just not in my jejunum.
> 
> Maybe someone can clarify the different kinds of remission and how they are achieved.I'll check the resources section in the meantime.


Dave, As you are aware I also have Perianal Crohns. However, I am thinking I am in a state of remission since January, 2014. The 3 current fistulas I have developed after two significant 6-8 weeks flares of extensive diarrhea & mucus the first in 2012 & the second in 2013. I have radically changed my diet & added supplements.  I just received blood work results yesterday & they seem to reflect how I feel. The blood work values also look good. I'll share some of the highlights with you: 
*CRP .65 * Range .00-7.99
*Vitamin B12 1092 *  Range 156-672 (Will discontinue my injections) 
*Iron 20.14 *  Range 7.00-30.40
*WBC 5.13*   Range 4.50-11.00
*RBC 4.39*   Range 3.80-5.80
 So I have been diarrhea & mucus flare free since January, 2014. The blood work looks good. I am scheduled for a colonoscopy in September. If that supports the blood work & how I feel I would deem myself to be in a state of remission. If the colonoscopy indicates Crohn's & contradicts the blood work then I am unfortunately not in a state of remission despite how I feel : ( That is how I understand Crohn's can sometimes mislead us : (


----------



## gtc45

carollco louann i was on remicade at 60 and had aresection at 65. i am 69 i would like to know your experiences with methotrexate. gtc45@verizon.net


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## polgara59

Today I learned there was a screwup and I wasn't referred for a CT scan (a newbie at the endo clinic apparently messed up), but that they want me to go on remicade so I need to go for a chest x-ray. I had the entire month of August where I could havedone that; now I have to try to fit it in on Monday, my first day back at school. Good thing we don't have students on Monday.

So now I'm learning about remicade and thinking things must be more severe than I thought if the doc is considering remicade. 

*sigh*


----------



## dave13

polgara59 said:


> So now I'm learning about remicade and thinking things must be more severe than I thought if the doc is considering remicade.
> 
> *sigh*


Some doctors start with Remicade to hit your CD hard right off the bat.Some start with milder meds and work up.


----------



## Thady

Hello and thank you for starting this support group ,I'm 59 and am in shock with this (inconclusive ) diagnosis ,due to have the dreaded colonoscopy next week ,any tips on how to handle prep.and how to eat afterwards .I really don't want to loose any more weight so looking for high calorie suggestions for the day before .thank you also can  this procedure cause a "flare up " ?


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## Whit

Reply to all the recent posts,
I have been on methotrexate for four months and after initial nausea, feeling like a zombie at time and exhaustion I began to feel much better.
I had a blood test every two weeks to check for liver damage and to make sure the white blood cell count was normal and then it went to once a month and now I am on every three months. So far the tests have been normal.

The pain in my lower abdomen has mostly gone away for the first time in years though when I eat too much fat it flares up and reminds me that I can never eat the foods I used too.

The prep for my colonoscopy was the swallowing the same awful liquid everyone else swallowed and staying near a toilet. I ate a soft diet for a few days afterward, especially yogurt, and then proceeded to some fish etc. I think as to whether a colonoscopy will cause a flare is an individual thing. 
Good luck  to all
So far I am a believer in methotrexate.
Whit


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## fozheart

I have been on methotrexate for various periods of time in the past 6 or 8 years, for my connective tissue disease. I am just wondering what dose you are on, Whit, and if you take it PO or IM.  I am glad that it is kicking in and working for you!


----------



## Grumpy1

Supposed to be re-starting Humira and taking methotrexate to stop my body from developing antibodies to the Humira - hopefully starting this or next week so that I can finally get off the prednisone merry-go-round.  A little nervous about losing my hair but I figure I can get a wig before I can get new intestines so the trade off is not so bad - the other possible side effects didn't worry me - so what does that say? :eek2:


----------



## Droopy Drawers

Grumpy1 said:


> Supposed to be re-starting Humira and taking methotrexate to stop my body from developing antibodies to the Humira - hopefully starting this or next week so that I can finally get off the prednisone merry-go-round.  A little nervous about losing my hair but I figure I can get a wig before I can get new intestines so the trade off is not so bad - the other possible side effects didn't worry me - so what does that say? :eek2:


Oral mtx or injection ?

Oral is harder on the hair
Ask about Folic acid

Just started Humira myself
Been on mtx injections 6 months

They tried switching me to tabs, but I don't absorb it that way


----------



## Grumpy1

Droopy Drawers said:


> Oral mtx or injection ?
> 
> Oral is harder on the hair
> Ask about Folic acid
> 
> Just started Humira myself
> Been on mtx injections 6 months
> 
> They tried switching me to tabs, but I don't absorb it that way


Injections so far I have had a real problem with the meds for crohns and am hoping this will be the answer - and I will ask about folic acid thanks.  I lost my hair partially once before from another illness years ago and it was traumatic especially because it didn't all grow back in the temple area and that really hit me hard.  My daughter says we can be twins though because she is on chemo again so it will be interesting anyway.

Did you find the Humira works well?


----------



## Droopy Drawers

Grumpy1 said:


> Injections so far I have had a real problem with the meds for crohns and am hoping this will be the answer - and I will ask about folic acid thanks.  I lost my hair partially once before from another illness years ago and it was traumatic especially because it didn't all grow back in the temple area and that really hit me hard.  My daughter says we can be twins though because she is on chemo again so it will be interesting anyway.
> 
> Did you find the Humira works well?


Just had my first dose of Humira on Friday
No idea if I'm honest

I also was just informed I have Ra

Right now I can't tell exactly where the pain is coming from

All I know is I'm one hurting puppy

Hope you feel better soon

Whoever called this the golden years should be shot :lol:


----------



## Grumpy1

Hmmmm I have Ra too! from the Crohn's - not nice


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## Droopy Drawers

Grumpy1 said:


> Hmmmm I have Ra too! from the Crohn's - not nice


Rheumy has been hounding me to start Humira for a year, but I was afraid

Right shoulder locked & felt like you could fry an egg on it several weeks ago
Rheumy gave me a cortisone injection in my shoulder & said this is it , Kiddo just tell me where you want the Humira delivered

Just the kick up the backside I needed


----------



## Grumpy1

I didn't have a lot of choice here, Imuran and remicade were definate no no's and had some difficulty with humira with swelling 7 days after the first 4 loading doses - they immediately stopped it and put me back on pred (which I hate) now it will be the humira and methotrexate after seeing family doctor, allergist, GI and setting an appt with the rheumy - beginning to form a distinct dislike for doctors too! Or perhaps I should say a more pronounced dislike as it seems like I am living with them instead of seeing one every couple of years when absolutely necessary.

I hope that your shoulder gets better soon, and that the humira works for you.


----------



## Jomar_uk

Hi
My name is john, I am 67 years young  and I have suffered from IBS I was told for over 30 years. It was on my 5th 999 admittance to hospital for severe stomach pain another consultant (Dr Subhani) wanted tests to find out what was really happening. Literally less than a minute into my barium meal it was obviously crohns I was told. I have 5 strictures in my small bowel and one at the terminal ileum. If this treatment fails I have another consultant who has examined me and my notes to remove the offending nasties  my CRP of > 100 and the stool test was mega high. My treatment since diagnosis has been excellent. I was on aziathioprine, mecaptapyrin methotrexate but all severely affected me badly. Just over a year ago was put onto 8 weekly infliximab (remicade) infusions and what a difference! I still had 'bad days" ( I also have paraplegia @ T10, Ménière's disease and worn out shoulder/arm joints from 30 years in my chair  but on the whole life is good (I am a Christian and my faith, family and friends have been great). I fully understand those black days when pain seems to be everywhere and just moving is agony. The better days do come. My consultant is brilliant and actually talks to my wife and I as friends so I feel not just treated but cared for. I discovered this support forum and it is great to see others encouraging and supporting each other and I wanted to introduce myself. There is life after and with crohns, it maybe different but is good and precious.
Shalom john


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## Whit

fozheart
I am on 1ML injections once a week and 1MG of folic acid every morning.
Whit


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## fozheart

Thanks, Whit.  I am taking a break from the Methotrexate.  My poor internal medicine doctor is treating me for everything, as I cannot afford to be trit trotting to and fro the cardiologist, rheumatologist, Colon/GI/Surgeon, etc.  She is doing a fine job, but the immunosupressant (sp) drugs scare her a bit.  My WBC dropped, and so she took me off, even though my oncologist was not worried.  Yes, and I took the folic acid too.


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## Whit

Fozheart,
I have fears about mtx also. It seems that suppressing my immune system has allowed other conditions I have hoped were under control to re-emerge.
I have post hepatic neuralgia from shingles which, since I started mtx, has come back with pain, mouth lesions and swelling etc. I hope to get off it soon as my GI says there is a  new promising drug coming on the market soon with little or no side effects though  I have forgotten its name.
What specifically worries your doc about mtx?
Thanks,
Whit


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## gtc45

doyourdream i was on remicade i didnt see side effects please contact me gtc45@verizon,net gt45


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## gtc45

i am 69 and had a resection at 65 i was on remicade.  the doctor wants me to be put on cimzia.  my brother is on it and it works for him he got crohns at 69.  i got it at 50.  they say its heredity but i think stress creates crohns i am scared of this drug,  contact me as soon as possible gt45 or gtc45@verizon.net.  iwas on 6mp asacol, iam now on endecort


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## fozheart

Whit said:


> Fozheart,
> I have fears about mtx also. It seems that suppressing my immune system has allowed other conditions I have hoped were under control to re-emerge.
> I have post hepatic neuralgia from shingles which, since I started mtx, has come back with pain, mouth lesions and swelling etc. I hope to get off it soon as my GI says there is a  new promising drug coming on the market soon with little or no side effects though  I have forgotten its name.
> What specifically worries your doc about mtx?
> Thanks,
> Whit


Hi Whit,
If there is a new a promising drug coming out with no side effects, that would surprise me, but good luck.  I am sorry about the complications  of having shingles` I know what that is like, and also the mouth sores.  (and nose sores for me, AND sores on my bony tush, from the pressure of sitting or even lying in bed.  MTX alone has not done much for me, except for my conncective tissue disease.  But, it has put me in a bind quite a few times- and a few hospitalizations, fro messing up my blood, but mostly making me susceptible to bronchitis, pnemonia, etc. It may have even been the culprit of my spiraling O2 saturate, which put me on oxygen 24/7 for 4 months.   I am just tired, and done with even trying to find the right answer.  Right now I need to grin and bear it with this GI stuff- I have been neglecting other things, and need to somehow get into the cardiologist, rheumy, time for a checkup on my shunt with the neurosurgeon, pulmonologist, and oncologist.  Just very tired, and out of money.  I really push myself and try to be as discreet as possible with my dumb problems, but I am tired.  Very tired.  I don't thik I can continue to fight all of these battles.  I just want to be comfortable, which my internal med dr. is in agreement with, and I want to enjoy the small things I can.  Good luck to you Whit, and all of my friends on here.  Sorry for the typos!


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## Whit

I am sorry to hear about your complications which seem to be much worse and more extensive than mine. Did you regular doctor take you off the MTX? I'll be seeing mine soon.
Whit


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## Laughngirl

Hello All,  This is going to be a bit long and I apologize for that, but really need some advice from those who know. I was diagnosed about 4 months ago with Crohns, and have been on only the powder that helps with bile. My GI said at the time that he thought I had a mild case and once the bile has been dealt with should heal on it's own.  I've been having severe body and joint aches, bouts of diarrhea, extreme fatigue and intense stomach pain.  I went to see my GI yesterday and when I relayed those symptoms to him, he looked at me like I had two heads and although he was very gentle about it, told me that my case was so minor that he really wasn't even sure now if I had Crohn's and that Crohn's doesn't cause any of those symptoms.  He said I should see my GP for that.  Just to give me piece of mind, he ordered blood work (which I did right away) to check my "sed" rate - not sure if I spelled that right.  Don't know those results yet.  The body/joint aches have backed off enough that I've returned to work (after missing 2 days) but my stomach is really really hurting.  I've not been able to eat much and only very bland things, which is fine if it helps, but doesn't seem to help.  Any advice on what my GI said?  Should I get a second opinion?  If they go by his medical notes only, I would think they would say the same thing.  I just want to feel better and if I don't really have Crohn's - GREAT!  but I'm not sure I have alot of confidence in him now.  When I had my colonoscopy - his office called me and said "you now have a new diagnosis of Crohns.  Now he says - maybe not...Thanks for reading   Oh, and I was diagnosed with IBS many many years ago.  Have suffered with the D more than I care to admit.  :stinks:


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## fozheart

Yes, Whit.  The regular doctor took me off of it because she never prescribed it before and was kind of nervous when my WBC dropped a bit.  I finally went to my GI today and feel much better with his confidence and plan.


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## Write2bheard

Laughngirl said:


> Hello All,  This is going to be a bit long and I apologize for that, but really need some advice from those who know. I was diagnosed about 4 months ago with Crohns, and have been on only the powder that helps with bile. My GI said at the time that he thought I had a mild case and once the bile has been dealt with should heal on it's own.  I've been having severe body and joint aches, bouts of diarrhea, extreme fatigue and intense stomach pain.  I went to see my GI yesterday and when I relayed those symptoms to him, he looked at me like I had two heads and although he was very gentle about it, told me that my case was so minor that he really wasn't even sure now if I had Crohn's and that Crohn's doesn't cause any of those symptoms.  He said I should see my GP for that.  Just to give me piece of mind, he ordered blood work (which I did right away) to check my "sed" rate - not sure if I spelled that right.  Don't know those results yet.  The body/joint aches have backed off enough that I've returned to work (after missing 2 days) but my stomach is really really hurting.  I've not been able to eat much and only very bland things, which is fine if it helps, but doesn't seem to help.  Any advice on what my GI said?  Should I get a second opinion?  If they go by his medical notes only, I would think they would say the same thing.  I just want to feel better and if I don't really have Crohn's - GREAT!  but I'm not sure I have alot of confidence in him now.  When I had my colonoscopy - his office called me and said "you now have a new diagnosis of Crohns.  Now he says - maybe not...Thanks for reading   Oh, and I was diagnosed with IBS many many years ago.  Have suffered with the D more than I care to admit.  :stinks:


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## Write2bheard

Find another doctor. I went through the exact same thing. It took me over a year and the loss of 55 lbs before I finally went to another doctor. By that time things were totally out of control. I ended up in the hospital for a week.


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## Laughngirl

Write2bheard, Thank you for that!  I was beginning to think I was just being a big baby.  Unfortunately, it seems there are more doctors out there that just want to dismiss women patients as "over-reacting."  It's nice to know I'm not the only one who gets that sometimes. :dusty:


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## dave13

Laughngirl-You should get a second opinion.See a GI and not a GP.


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## Write2bheard

Not sure where you live Laughngirl. I live in Maryland and am treated at University of Maryland Digestive Health Center. It's a 2 hour drive, but well worth it. My doctor is going to be speaking on IBD at a local conference being held by CCFA. She is a gem. CCFA might be able to help you find a good GI in your area.


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## Laughngirl

Thank you all for your input.  I will definitely get a second opinion and will use the resources you have suggested to search for a new GI.


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## LodgeLady

Laughngirl said:


> Thank you all for your input.  I will definitely get a second opinion and will use the resources you have suggested to search for a new GI.



Just my experience but I was not pleased with my specialist consult at University of Maryland. I saw Dr. Flasar and I would recommend NOT seeing him.


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## Laughngirl

Thank you Lodgelady!


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## Write2bheard

Sorry you weren't happy there Lodgelady. I see Doctor Patil. She actually listens. Maybe it's just that she's a SHE. The other two GIs I saw always seemed to be somewhere else. She's also open to trying new things when the old approach isn't working.


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## Mike58

Has anyone in our group been to the Mayo Clinic IBD department for treatment or examination?  If so, I would like to read your comments about your experiences there.  I am scheduled to go to the Mayo in Scottsdale, AZ on the 17th of this month.
Thanks,
Mike


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## Tootsie

Hi - I'm 65 and was just recently diagnosed this year.  I am in a wheelchair and have recently gained a lot of weight due to inactivity, and I think the docs were just ignoring my symptoms.  Anyhow, i am now seeing a doctor that I detest and am in the process of finding another one, but it"s not east.  Right now I am on 40 mg of Prednisone and about to start on 50 mg of mercaptopurine, but when i saw the side effects it made me very afraid to take it.  Are other my age taking it and what do you think?  Or what are you taking and is it helping?  New to this so anything would help.  Feeling very scared and alone.


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## scottsma

Hello Tootsie and welcome. I'm sorry I'm unable to advise on your meds.having not used any of them. I just wanted to say that we understand how scared and alone you feel,but there is always someone on here to chat to who are, or have been, in exactly the same position.It's tough being a crohnie, but with support from the forum you'll find you  won't feel  quite so alone. Best wishes and feel better soon.


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## fozheart

Hi Mike58,

I have been to Mayo in Jacksonville, Florida, but it was not for IBD.  I went to the pulmonologist, cardiologist.  They were good, but the visit did not really solve my problems, because those are the only 2 departments I went to.  I am telling you this, because I know that you have multiple illnesses, and you know how they can sometimes kind of overlap.  I don't know how specific you referral is, but if it is possible, I would recommend checking with your doctor, to see if you could be seen by other specialists too, if needed, so that nothing is uncovered.  (I hope this makes sense- I did not write it very well!)


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## CeeCeeGo

Hi
I was diagnosed at 48 but am now 50, so hopefully I can join!


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## dave13

CeeCeeGo said:


> Hi
> I was diagnosed at 48 but am now 50, so hopefully I can join!


Of course! Welcome!


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## Grumpy1

Hey guys has anyone got any advice on mtx - am starting tomorrow and am a little nervous.  Have to take 15 mg per week to start, have upped my Humira to 1 shot every week  from 1 shot every 2 weeks, put me back on 20 mg of pred until everything starts to work, have to take 1 mg of folic acid everyday and am scheduled to have a MRI as they think that the pred has caused a problem with my hip.  Have heard not so nice things about MTX and would like to know what to avoid or what to take it with to alleviate some of the worse side effects from those in the know.  This is my Hail Mary Pass as I am allergic to Remicade and Imuran and the Humira isn't working for me on its own so I'm hoping that it's not going to be to bad.  Any advice would be appreciated.  Thanks


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## dave13

Grumpy1 said:


> Hey guys has anyone got any advice on mtx - am starting tomorrow and am a little nervous.  Have to take 15 mg per week to start, have upped my Humira to 1 shot every week  from 1 shot every 2 weeks, put me back on 20 mg of pred until everything starts to work, have to take 1 mg of folic acid everyday and am scheduled to have a MRI as they think that the pred has caused a problem with my hip.  Have heard not so nice things about MTX and would like to know what to avoid or what to take it with to alleviate some of the worse side effects from those in the know.  This is my Hail Mary Pass as I am allergic to Remicade and Imuran and the Humira isn't working for me on its own so I'm hoping that it's not going to be to bad.  Any advice would be appreciated.  Thanks


No experience to share,but I am sending lots of support your way.


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## Grumpy1

Thanks Dave, you know that it's right back at ya!


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## Write2bheard

Grumpy I take 10ml once a week along with Remicade every 5 weeks. Main side effects are fatigue and tendon pain, which lasts a day or two. I'm increasing the folic acid to see if that helps. Good luck. Hope it helps.


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## Grumpy1

Okay guys, Methotrexate is going not too bad except my hair is falling out and the day I take it I'm a little nauseated.  I find that I feel "full" all the time now not sure what that is.  The hair thing is annoying - I rather like my hair where it is thank you very much.  Not sure what to do about that.


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## Whit

Grumpy1,
I take an anti nausea pill two hours before I give myself the shot and that helps keep the nausea at bay. They are prescription, but worth it. I am mostly bald so the hair thing didn't matter. Tiredness and occasional disorientation are some of the side effects of MTX for me. Good luck.
Whit


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## gtc45

Doyourdream i believe the medical research got it wrong,  i think crohns is caused by stress,  i believe you and others like me when are put under too  much stress it causes the disease,  The people i spoke too got the disease when they were put under too much stress causing changes in their body to take place.  i think the medical community will come to this realization,   Because of this i tell my daughter to stay away from real stressful jobs,  I believe your ibs due to the stress was under turned into crohns.My daughter has ibs and that can turn into crohns if she is put under too much stress.
gtc45


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## Whit

gtc45
Definitely part of it though I think from what I've read environmental issues and genetic predisposition may play a part
Whit


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## orangesunflower

I just read all posts and enjoyed them. It appears all have had diarrhea at some point. This is my story:
Diagnosed with Crohn's 4 years ago with routine colonoscopy (age 51 at time).  I had NO symptoms and my doctor was surprised I had none. I didn't want to be treated since I had no symptoms except for inflamed Ileum.  Four years later (2014) I began to have a pressure feeling on my right side near hip area that radiated to my back. Eventually after testing, I developed severe pain near ileum. Never had diarrhea, but had side, abdominal pains, occasional back pain and slight constipation.  Started prednisone and did well but was taken off -not a good long term medication.  Started Humira in July and was told that it was the golden drug for Crohn's.  Symptoms have returned - not as severe and I was on Azathioprine for 1 week (stopped 2 days ago because of side effects).   My last colonoscopy (last month) showed 80% scarring and 20% inflammation so apparently Humira is not so golden!  I have been having pain near and under breast. Lung X-ray and other tests showed nothing. Has anyone had breast pain from Crohn's? I also have been having joint pain in my hands and my ilieum and side pains are back. Going to call new doctor next week for second opinion.  Getting another mammogram in early January to rule out breast cancer.


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## Whit

orangesunflower
I think any of the powerful drugs we have to take throw up a number of side effects that doctors don't think are relevant. I get all sorts of weird pains, itching, headaches, joint pain and general malaise from the methotrexate I inject weekly. I am lowering my weekly dose on Dr.'s orders and now for the first time have incredible nausea which my doc says shouldn't be happening.
You have to almost be your own diagnostician.
Good luck
Whit


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## RNGirl

Happy New Year!  I am new to this support group.  I was diagnosed earlier this year @ Age 59.  Still trying to navigate the new diagnosis which has been quite the struggle.

I was given Entocort for a few months then started Pentasa while I was weaning off the Entocort.  Unfortunately, I had a horrible reaction to the Pentasa which I suspect was a Salicylate intolerance.  Did my research after my bad experience and now wondering if I am reacting to foods with salicylates in them.  Anyone else have issues like this after taking Pentasa?   Currently not taking any meds, just all natural vitamins and vit. D3

Been doing the auto immune version of the Paleo diet for about 4 months now, seems to be working well, just seem to be having issues with the already limited food I can eat on the Paleo.

Thanks for your support!


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## maggiesfour

Welcome RNGirl...and Happy 2015 to everyone.  I wish us all an abundance of luck, and good intuition for ourselves. And that we treat ourselves kindly, and we are careful in how we care for our bodies. We are all quite precious...

Questioning how one gets what we have ... that can go on forever, no one knows. They do know it can be hereditary, but that does not mean you will get it. No one in my family for generations has had it, or has it. I KNOW I got it from antibiotics, and even at that, the doctors know so little. So...Who knows -- So far I know what "doesn't" work for me, lol.  

Have a great New Years Day!!


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## Whit

RNGIRL
I had the horrible Pentasa reaction but after I got off it I didn't have food allergies that I am aware of. I ended up in the emergency room for the second time since I was off meds entirely. This led me to find a new GI and I am now on methotrexate and though this is a course of chemotherapy it is working well. I made it through 2014 without a hospital visit.
Happy New Year to you and I hope this year will be better than  last.
Whit


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## LodgeLady

At Maggiesfour-HAPPY NEW YEAR!


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## LodgeLady

RNgirl, when I started Pentasa I had terrible joint pain for 4 months. It eventually subsided. Do you think if you kept taking the Pentasa your reactions might go away? How severe was the reaction? I am taking Enteragam along with Pentasa. The addition of Enteragam is what finally got me feeling " normal" although I watch what I eat.


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## LodgeLady

@Maggiesfour.....I had to keep telling my GI how aweful I feel. The courses of Pred and Entocort was just not cutting it. I pleaded for additional meds and now on the Pentasa and Enteragam am finally getting some relief. My only problem right now is I still can't gain any weight. If I get another flare I am going to strongly demand a pill cam. No one is a better advocate for our health than ourselves!


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## maggiesfour

@Whit: I made it through 2014 without a hospital visit too! Yeah for us! Between 2012/13 - 11 mos total hospitalized, and in 6 weeks time: back surgery, appendectomy and my gall bladder removed. I am still trying to put the pieces back together. 

@LodgeLady: You need to be your own advocate, and it seems you are doing quite well. I couldn't gain weight at all for 18 mos, then all of a sudden I gained 40 pounds. As soon as the C-diff cleared - bam!! Prednisone weight gain - crazy! Are you able to changed doctors? I kept firing them and finding new ones. Very scary and frustrating. For the first few months, I kept thinking, how is it possible I know more than they do - then it hit me. They don't have time to research, and query on boards like we can. Even my current GI now, who I adore, and he is like part of our family, he is so busy and overwhelmed - almost all the time. He was and is very open-minded with me, when he saw that my suggestions worked in certain areas. Initially, I hounded him, and we actually had an argument in the hospital. He could not believe the amount of info I had on hand. I told him, I am living in a hospital, therefore my computer and I are working OT - to get me well. I read so often when I first got sick - "we know our bodies the best - be your own advocate." I also realized quickly that many people do not research, and just take the meds given to them, and if it works it works, if not, they suffer. So - I pray for them. 

Everyone - have a lovely day with your families, friends, pets, or just yourselves. Its a New Year - Let's make this one count!


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## Whit

maggiesfour,
Yeah to you too. 
Whit


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## RNGirl

Thank you Maggiesfour, Whit and Lodgelady for the very nice welcome.  So glad I found this forum.  Nice to discuss with people of my age group who understand the mental, physical and emotional challenges of this disease.

I was on Pentasa for about 3 months.  I tried to stay on it but the constant nausea, muscle pains and cramps, dizzyness, light headed, weakness etc. was unbearable.  Really felt like I was circling the drain so to speak.  Tried to keep working, but finally had to give up and stay home for two weeks.  Oh yea, and labs showed metabolic acidosis which indicates salicylate overdose.  I called my wonderful internist who told me to just stop it because he felt I was one of those people who are sensitive to salicylates.  Think the Pentasa ripped my gut up.  My GI doc was a piece of work and wanted to start me on Imuran because I didn't tolerate the Pentasa.  Guess I would have agreed to this if I had been having bleeding, pain, diarrhea etc.  My symptoms have always been systemic, with joint, head, sinus pressure, nausea and lack of appetite.  10 cm terminal ileum affected that hasn't progressed in 3 years.  Finally diagnosed this year.  

I decided to travel across the state to another GI who is taking a more conservative approach with me.  Not just assign you a number, put you in a category determined by the part of the gut affected by the crohns and throw some meds at you.   Really looks at the whole person and takes the time to listen!!

Truly a journey!  Wish you all a healthy 2015


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## Whit

RNGirl
My crohns is also in the last section of my ileum. Pentasa doesn't work there as it is more for the colon. My GI doc (a new one I found) laughed and said there were two choices 1) An arthroscopic removal of the swollen section of intestine or 2) trying to reduce the inflammation with chemotherapy using an immuno derpressant called methotrexate. The methotrexate is working though there are side effects.
The operation was a no go anyway since my health insurance wouldn't approve it unless other strategies had been tried and failed and I was near death's door
Good luck
Whit


----------



## RNGirl

Whit,
Sounds like you have been through the wringer.  So sorry, this disease is difficult to say the least.  Not a clear cut disease to treat and also seems we all have our challenges with the Gastro docs and their delightful attitudes.  Before I switched my GI doc to one 300 miles away, I was pulling my hair out too.  The first one was really ticked at me for questioning the meds, telling me diet won't help etc.  Well, guess what buddy you lost my business.  I also let him know that I didn't appreciate getting put in a "clinical pathway" with meds that don't agree with me just because they are made for a certain part of your intestines.  Always be your own advocate.  You need to to survive the health care system.


----------



## Whit

RNGirl
Believe it or not, the GI group I first went to here in Charlottesville, VA would only share the results of your blood work (when on methotrexate they have to test you once every two weeks initially) or a colonoscopy via a phone message system. You had to dial there 800 number to get a recording and it would say your last test was ok or not. A real personal touch. I quit them ASAP.
Whit


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## RNGirl

That's unbelievable.  It seems there are a larger proportion of unreasonable GI docs out there.  Makes me appreciate my fabulous internist.  And reason I travel 300 miles across state to see a different GI.  My old GI office was like going to a cattle call starting with the receptionist.  Makes you want to cry when you finally find a good practice with a caring doctor, nurses and office help.


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## Annlewis

I'm currently 58. I went for a 50 year old colonoscopy screening and they found a lot of inflammation. I felt fine so it was written off as just something out of wack. They scheduled me for another colonoscopy at 55 though. That one also showed inflammation ( actually a little more), they biopsied and it came back positive for Crohns. Since I was still symptom free I refused meds. Last month (at age 58) after a very stressful year, I developed belly pain, night sweats, bloody diarrhea,.....Now they consider me an active Crohns patient. I'm taking Lialda, but am going to try to get them to agree to stop it after a few months and see how i do. I'm also postponing my next colonoscopy till July (instead of April) due to insurance changes. So, I won't know much more for many months. I'm still not accepting this, probably since my symptoms are so minimal. I feel the doctors are trying to scare me and are trying to treat the disease, not the patient!


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## RNGirl

Hi Annlewis,

Your story sounds very similar to mine.  Random colonoscopy, inflammation, another colonoscopy 3 years later.  My second scope showed no increase in inflammation.  I didn't know there were no changes until after I had been started on Entocort and Pentasa.  Had I known it had not progressed I would have put off taking the meds.  Unfortunately, the Pentasa did a real number on me and I am still trying to rally from the damage it did to my gut.  I have minimal GI issues, but I too have been given the full blown Crohns diagnosis.  Currently, I've been off all meds for almost 5 months.  Managing with diet.  Feel like my systemic symptoms reared their head after some very stressful work stuff too.  Take care, I know this stuff is rough.


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## Whit

Annlewis,
My situation was much the same as you both. I had all the symptoms of something wrong for many years with lots of different doctors coming up with a different diagnosis. Unfortunately I ended up in the emergency room with a partial blockage and Crohn's was considered the problem.
I went on different drugs and had I to do it over I would have accepted the diagnosis as a incurable life threatening disease and started with a diet very low on fiber but nutritious and not taken any drugs.  As it is, I got on the drug cycle and am hoping to get off it forever because the side effect of any of these drugs, though different for everyone, are major. Doctors minimize these as due to something else because they never had reports of other patients with these side effects but I know different.
The cure can be worse than the disease. I think eating well is best. I visited a licensed nutritionist and she has been a huge help.
Good luck,
Whit


----------



## RNGirl

Seems like the common thread is weird symptoms for many years then a random colonoscopy after the age of 50 that indicates Crohns.  Some GI docs get very aggressive with the meds to just get us out of their hair.  There is no mention of trying to find the root cause, just give you a med to put a bandage on the symptoms.  I take an all natural women's vitamin and 5000 mg D3.  Doing the auto immune Paleo diet and adding almond flour, pure maple syrup (for a Paleo chocolate chip cookie I make-very good) a splash of organic honey to herbal tea in the morning.  I seem to be holding my own at the moment without toxic chemicals.  Started trying to use soaps, make-up etc that are as chemical free as possible.  Hopefully, all of this clean living will help heal my body


----------



## Freddie

Hi, I am also recently diagnosed after a screening colonscopy and am trying management with SCD. I am sorry that a few of you haven't found a sympathetic GI, mine is lovely- he is a friend that I went through med school with 30 years ago but all his patients think he is sweet and gentle. When he rang with my biospy result and I mentioned diet he suggested giving it go for 3 months first. He wants me to achieve mucosal healing and that may eventually require medications. Time will tell.
SCD seems to agree with me but have had a look at the paleo immune diet and may try it if SCD not successful in inducing remission.
UMass have an ongoing trial IBD-AID (anti inflammatory diet) this may help diet influence in Crohn's go mainstream.
Best wishes


----------



## RNGirl

Hi Freddie,

So nice you have a great GI doc who is willing to give diet a try instead of just jumping into the meds.  I will try to look up the study on mucosal healing.  Of course exactly what SCD and Paleo diets intend to do.  Good luck to you!

RNGirl


----------



## Whit

I don't know about the SCD diet though I think watching what you eat is great. I keep reminding myself, however, that Crohn's, and the mucosal inflammation that I have in the ileum of my small intestine, will never go away. It is a lifelong chronic disease that can only be managed and that was the hardest thing for me to come to terms with.
Right now, I have finally gotten the inflammation dampened down from severe to mild though that wouldn't technically be called remission. remission is when you are free of the inflammation at least for awhile. 
So, speaking of diets, I do a lot of juicing and stay away from spicy foods or foods that won't pass through well and hope for the best. Constant monitoring and being your own medical advocate makes sense. Stay off drugs as long as you can. An auto immune disease like this is hard to manage and harder to accept that you've got it.
The real question is how did we get it and what causes a flare? Research is not clear.
Again, I'd like to learn more about the SCD diet.
Best to all \
Whit


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## dave13

Whit

I follow the SCD. Have you checked out the official website for the SCD? Have you read 'Breaking The Vicious Cycle'? Extremely informative and interesting,even if you don't choose to try the diet,in my opinion. I pop over to the SCD support group on the forum,but they seem to argue quite a bit over there. Sorry I don't have links to these places.


----------



## dave13

Whit ,here is a link http://www.breakingtheviciouscycle.info/


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## Flatblackdog

*Hello all*

Hi everyone. I was diagnosed in 2012 at 53 with Crohn's Ileitis after a camera enteroscopy, CT and a dual balloon colonoscopy. Since then it's been a bumpy ride off and on. At the moment my small intestine seems to be fine, but my large intestine (Lower Left Abdomen) has begun to bother me. I'm scheduled for a CT with Contrast on Monday to see why I'm passing small bits of bright red stringy mucus with my stool (which has not been consistent since early December). Still new to all this and concerned about cancer. Just finished a round of 1500 Mg / day of Xifaxan to rule out bacterial issues.

Cheers,

Toby

---------
9 MG Entocort / day
B12 Supplement


----------



## RNGirl

Flatblackdog,

Good luck to you on Monday.  So sorry you are going through this.  Sending good thoughts to you.  Take care,

RNGirl


----------



## dave13

Yeah,good luck on Monday Flatblackdog.Let us know how it goes.


----------



## Marlena

I am new to all this, was just diagnosed with Crohn's at age 70 (really, I am only 39).  Am on Lialda and Prednisone .    Had an endoscopy/colonoscopy 7 years ago and all was well.  Phooey.  Learning to eat differently and taking LOTS of vitamins and minerals and water!  I miss celery!  Of all things.  Those nice crisp crunches.  Supposedly have mild to moderate case.


----------



## scottsma

Welcome Marlena,we're a great bunch of people on this forum,so although I'm sorry you have to be here at all,I'm glad you found us and I hope you stay and make lots of friends who will offer lots of support and advice. And coincidentally,I'm also 39yrs old.(19 really)


----------



## Marlena

Thanks, it's good to find a community when you're not sure which way is up.


----------



## Marlena

If you sense a flare coming, is there anything you can do to avoid it?  I really don't want to hit the hospital again.  My husband is in early stage Alzheimer's and really shouldn't be left alone.  I think I get some blockages, as I start feeling full a lot and then comes the severely distended tummy, pain, diarrhea and if I can just throw up, all begins to be better.  The pain is awful and usually my potassium goes through the floor and I wind up on that awful tasting Flagyl.  Talk about an appetite killer!


----------



## scottsma

Marlena said:


> Thanks, it's good to find a community when you're not sure which way is up.


Now THAT could be a problem with Crohns.......


----------



## scottsma

Marlena said:


> If you sense a flare coming, is there anything you can do to avoid it?  I really don't want to hit the hospital again.  My husband is in early stage Alzheimer's and really shouldn't be left alone.  I think I get some blockages, as I start feeling full a lot and then comes the severely distended tummy, pain, diarrhea and if I can just throw up, all begins to be better.  The pain is awful and usually my potassium goes through the floor and I wind up on that awful tasting Flagyl.  Talk about an appetite killer!


I wish I could help Marlena,I'm flaring just now,and it just snuck up on me.I have been on Pred.for a month and it started five days in :confused2:
Someone will be along soon with some ideas maybe,but if it was that easy we'd all do it.Feel better soon.:ghug:


----------



## Marlena

Oops, guess I better know which way is up and use a different phrase.  LOL


----------



## RNGirl

Hi Marlena,

I am relatively new to this forum too.  Just diagnosed a year ago, mild to moderate crohns too.  I've learned a lot over the last year, have to say I've had my emotional ups and downs to say the least.  I have a very hard time with meds so trying to maintain at the moment with the Paleo diet.  Started with the "auto immune" version of Paleo.  Trying to get the guts to start adding foods now.  Paleo isn't the answer to all our problems, but for now it is helping me stay off meds.

Really nice to have the support of others who really understand what it's like to have crohns .   Welcome!


----------



## Freddie

Hi Marlena,

I am pretty new to this disease but have chosen to try the SCD route which seems to be agreeing with me.(my calprotectin has dropped from over 800 to 68 in 6 weeks) 
However, if I have eaten something that disagrees with me and makes me feel unwell, sick and nauseous or causes abdo pain there are a few things that seem to calm it all back down again. Tea (no milk), any type but especially peppermint tea. An almond milk and banana smoothy or some SCD yoghurt.

Everyone is different and I guess it is about finding some safe foods or drinks that don't exacerbate the inflammation and help settle it.

regards, Freddie


----------



## Marlena

At the moment I'm on the low residue diet.  and due to a lot of stressful things in my life all at once, I am not making any major shifts in diet, but I am reading about Paleo, SCD and others.  I did start juicing in order to get more veggies in.  Eating lots of yogurt and I drink tea, which has a lot of good stuff in it.  Both peppermint and ginger tisanes are really good.


----------



## LodgeLady

I need to vent about changing our diets. I have really changed the foods I eat. Lactose free,gluten free, low fiber, low sugar. Honestly I am tired of it all. All of the changes help but do not get rid of my symptoms. Sometimes I say the h&ll with it and eat it anyway. Sometimes I pay for it sometimes not.


----------



## Marlena

Sure do understand LodgeLady.  it gets really confusing.


----------



## RNGirl

LodgeLady,

I hear ya!  It seems now I react to histamine foods that are very high on the Paleo diet.  Get sick of working hard on the diet thing too.  I know it helps, but always feel like I am a bite away from either getting glutened, too much histamine etc. etc.  really don't think my mild symptoms warrant chemicals yet and holding out until I have to cross that line.  I have horrible reactions to meds.  When I start them again, I will be in for another fight to survive.

Anyone else struggling with an "undiagnosed" histamine intolerance?  Sounds like it is quite common with crohns.


----------



## Whit

What I decided after two visits to the ER with blockages was to meet with a nutritionist associated with the hospital and it was the best decision I every made.
It seems that Crohn's in the small intestine creates a mucosal inflamation around the inner lining and reduces the amount of vitamins and minerals that can be absorbed and, if you have a flare, the mucosal inflammation increases until you get a partial blockage or even full in some circumstances. You can, apparently, get a flare regardless of what you eat but you can get a blockage because you may eat the wrong foods.
Some foods that might increase the chances of a blockage are corn and brocolli and nuts etc and some foods that might cause a flare, at least for me, are alcohol, peppers and foods high in fat. Also, eating too much at once can get me in trouble.
My nutritionist gave me a list of foods that I could eat that were low fiber and healthy including all kinds of potatoes and pasta and pointed out that the most easily digestible flesh was fish then poultry and then red meat and on and on. 
So that is what I have been doing along with juicing, because I think with juicing the vitamins and minerals that travel through your system have the best chance of being absorbed through the mucosal coating.
I looked into all the diets (Paleo etc) and instead continued carefully eating. I did find a book a like a lot "What to Eat with IBD-A comprehensive nutrition and recipe guide for crohn's disease and ulcerative colitis by Tracie Dalessandro who is a nutritionist.
I am doing very well on a maintenace dose of methotrexate, a chemotherapy drug that doesn't appear to have too many side effects, and I think for me that is what is helping keep any more flares at bay and me out of the hospital. Eating properly, however, is a must to keep from triggering an unwanted flare. 
So my attitude is to forget the diets and eat those things you like and occassionally if you have to eat something that you crave but you know can cause a flare make sure it is a small amount. I buy a small bag of fritos, eat a few handfuls, and throw the rest away.
Anyone who wants me to send them a list of the foods from my nutritionist let me know and I will be glad to
Whit


----------



## Grumpy1

Hey guys, just caught up with the thread and diet is a big issue. Was diagnosed with acute Crohns in November 2013.  Still picking my way through the minefield.  Marlena, welcome to the forum, it's funny the things you miss mine is apples and celery and salads.   
Since November 2013 I have basically been on a fibre free diet except for 3 months in 2014 when they thought they had this under control (not).  So Meats, Dairy and rice and some pasta has been my diet, luckily have no issue with dairy.  Started MTX in October and just got the go ahead to add cooked to death veges back to my diet late in January (no corn) can have potatoes no skin.  Fish and eggs were my original trigger foods and I have eaten fish since I was put on medication but eggs are still giving me grief - not sure why.   I have to admit I am getting sick of Chicken


----------



## Whit

Grumpy1,
All the same with me except eggs are OK and I eat a lot of egg dishes.  I peel everything and I miss blueberries a lot. Veggies in the frozen food section work for me because they cook up quickly. When I am in my last stages of life I'll ask for popcorn which may put me over the edge. We don't go to the movies as much anymore because that popcorn fragrance drives me crazy.
I hope the MTX works for you as well as it has for me.  
Good luck to all and again I think creating your own diet works best because things can change quickly.
Whit
P.S.-When we go out to dinner with friends I will often not order a main dish and just eat off everyone else's plate especially since the portions are so large and they don't mind sharing. That way I don't have to eat much and can choose those things that work for me. Interestingly we have started to choose restaurants with food that is better for everyone.


----------



## Grumpy1

Whit, popcorn = torture.  I still go to movies but I eat dinner before I go and then I don't mind so much.  But I do love popcorn.    I got popcorn (chocolate covered with almonds and pecans for Christmas Harry and Davids) talk about cruel.  
So far learning what I can and can't eat has been an adventure.  Take care.


----------



## Marlena

OOOOOOOOOOH, popcorn, one of my favorite foods in the world.  Weep, moan, sob, I miss you so.  I have been trying popcorn flavored mini-rice cakes and they are sort of okay, but then again.... I agree about the diet, I just pick my way through.  Too much tomato sauce  (Italian husband) is death, as is too much fat or just too much food.  I'd really like it if we could all have a set of instructions that worked for everyone. LOL
I just started with a nutritionist and she's great.  Helpful and not judgemental.  Good luck to you all, M


----------



## Grumpy1

Marlena, have you tried Rice crisps instead of rice cakes?  No fiber and pretty good.  Have in Canada at least in AB and BC not sure if available in US though. My favorite is sesame flavored or original is good too! Low calorie as well great snack food


----------



## Marlena

The ones I get are by Quaker and have 1 gram of fiber for 13 mini-cakes.  Since I usually only have about 4, i think I'm safe and so far, they don't bother me.  And they have crunch!  I don't think I've seen Rice crisps, but I am going to the health food store tomorrow and they may have them, thanks for the thought, M


----------



## Marlena

Oh, I just noticed you're from Victoria.  I was there a long time ago, how beautiful it is.


----------



## Princess Mom

I'm hoping this is still an active support group. I see that the most recent post is a year old. MLITS, I'm also in the Salt Lake area. 
After 44 years of illness I have finally been given a diagnosis. I sure don't want this crummy disease but it is better to know for certain than to continually be under-treated, and getting sicker...now I have a superb physician and we can get on with getting this thing treated. I'm wondering which is safer; remicade or  Humira? Both frighten me.


----------



## Marlena

I posted yesterday, so it is is active.  I can't help you about the meds, as I have no experience, but others here do and there  is a group for both of those meds, just do a search and you'll find them - best of luck to you.


----------



## Whit

Speaking of rice cakes etc why not try the old childhood rice crispy treats found on the bag of mini-marshmallow. My nutritionist suggested this for snacks and a little fiber.
Whit


----------



## Marlena

Have been making them like crazy.  I love them!, thanks for the suggestion, though - I'm sure these would be good for lots of folks.


----------



## Princess Mom

You are all hilarious! Thank you daring to share the nitty gritty of this "lovely" disease.  I've suffered with this gruesome condition since the age of 15 but I wasn't officially diagnosed until a month ago. Now I'm 59! 
Eh...what are you gonna do?? Of course I followed the usual path...doctors saying IBS, carcinoid tumor, polyps...geez, how did I get so broken? Three months ago I was still running 5 to 6 miles per day. Now I'm lucky to run to the bathroom! Even my brain feels run down now. Does everyone suffer excruciating fatigue with this like I do? 
I can't retire for 2.5 years yet. I sure hope I can make it that long. 
It is a blessing to me to hear your stories. Somehow we'll all make it through this. 
Bless all of you!


----------



## Marlena

Yesterday I went to bed at 7 pm - and I pushed myself to stay up that long.  I am on Prednisone and it keeps me awake and like the energizer bunny, but underneath I am so tired  I hardly know what to do..  Last night, I actually did get a pretty good night''s sleep.

Yeah, we will make it through - Crohnies are tough, we've had to be.


----------



## Whit

Princess Mom,
Fatigue is a big part of it and very hard to adjust to because my well laid plans for the day or week change when I'm too tired to function. You do wonder how, after all the years we functioned somewhat normally, we've reached this stage? I guess Crohn's just builds up until it overwhelms the gut. Good luck and with this disease I've discovered you have to be your own advocate as you navigate through the health system because there is a lot about this disease that is still unknown.
Whit


----------



## Freddie

Marlena

I find fatigue a big issue and the occasional nanny nap is required. Make sure your iron levels are good and that you don't have anaemia contributing to your fatigue.

With regard sleeping I am taking melatonin 2.5mg at bedtime, which has immune benefits for Crohn's as well as helps sleeping. Can't handle steroids myself, the mania and insomnia are unbearable.

regards, Freddie


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## Marlena

so far, I am managing, but boy, do I get tired!  I use melatonin and benadryl and they help.


----------



## Princess Mom

I read that Crohn's can also cause neuropathy. I've chronically suffered from B12 deficiency, iron deficiency, and peripheral neuropathy in my hands and feet. It seems like I finally have an explanation for it! I've been on iron infusions and B12 shots for 21 years. It seems incredible to me that some of us go for so many years before being diagnosed. Meanwhile, we edge a little closer to having cancer. Have any of you suffered from skin breakdowns like the photos I've seen? One more question; do any of you have a flare after having had a colonoscopy? I always seem to feel much worse afterward, and usually for a couple of months or more.


----------



## Whit

Colonoscopies get me afterward also.
Whit


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## scottsma

Awaiting MRI results.Prior to MRI, was on Prednisolone for 4wks,during which time a flare began.MRI was for small bowel but I believe flare is from large bowel as lots of bright red blood and small clots during first BM every morning.Was dx,d  with proctitis originally with same symptoms.Do you think inflammation in large bowel will show on MRI ?

MRI was because inflammation in splenic flexure spotted with colonoscopy,also calpro level was 300.Putting off going to Doc.until I get results.


----------



## aa9zz

Diagnosed with Crohn's six months ago and just found this forum. I'll read and learn from all of you. Anyone else have trouble sleeping? I'm exhausted most of the time but still can't sleep. Anyone use sleep aids?


----------



## Marlena

Sleep, what's that?  I use a combo of Benedryl and melatonin and that helps with the least amount of side effects.  Some people get whizzed up on benadryl, so you need to see.  I only take a half.


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## Whit

How appropriate you bring this up as I laid in bed half the night with my eyes wide open. Finally took a fourth of a benadryl and one gabapenten (melatonin) and got a little shut eye.  I think with being older and having the usual old age sleep problems and the drugs we are on that sleeping is tough and it makes it really rough if you have to work.
Anyway, the best sleep aids for me are benadryl and melatonin.
Good luck
Whit


----------



## Grumpy1

Sleep is the wish of all steroid users I think.  I tried Melatonin and it worked great the first night and the second night I was wide awake staring at the ceiling so....I didn't take it again.  Went back to old faithful a cup of really hot milk not scientific but if I grab 4 - 5 hours a night I can function and not snap some poor unsuspecting fools head off of his/her shoulders.  
Rice crispy squares are right up there on my favorite list but not a big sweet fan more salty - having trouble finding salty things I can eat without spending a great deal of time in the b/r.  Also the weight gain from being on steroids for 15 months is a little concerning so I probably shouldn't eat either but seriously chicken is getting to be on my least favorite list even though I have the least difficulty after eating it


----------



## Whit

I agree that sometime gabapentin keeps me awake too but sometimes so does benadryl. Warm milk and lots of exercise is the best recipe for sleep I guess. I too have trouble with a desire for salt and you are right-fried chicken gets me for two or three days after I eat it-even one small leg.
Whit


----------



## Marlena

I find the combo works for me for about 4 hours and then I take some more and sometimes I almost get 6-7 hours of wakeful sleep, that is, i am trying to go back to sleep.  I used to have little naps in the day time 20 min or so,  But they are, alas, gone.


----------



## peluchde

I had my first obstruction on my 52nd birthday!  What a shock!  I had been healthy all my life.  Doctors called it a fluke.  Three years later, I had 5 obstructions in less than a year and I was sent to the Mayo Clinic in Jacksonville.  They finally diagnosed me with Crohn's and told me it was "bimodal" - occurring in the early 20's and later in the +50's.  My older sister suffered for many years with Crohn's and passed away at age 44 from sepsis due to a bowel perforation.  Needless to say, I was/am not thrilled with the diagnosis.  I've been on Pentasa, Prednisone, Entocort, and now Humira.  GI would like me to start Remicade infusions, but I am frightened.  Anyone with advice for me?


----------



## Princess Mom

Peluchde, I'm so sorry that you're going through so much! I'm 59, just FINALLY got diagnosed about a month ago and I'm about to start on Humira. I'm with you...I'm frightened. Do you have any trouble taking the Humira? My Gastro, whom I deeply appreciate, said that Crohn's usually gets better with age. So far I haven't found that to be true. I'm in a bad flare right now and I don't dare eat anything. Even the smallest about of food will make me blow up like I'm 8 months pregnant. At my age??? It's very hard to go to work feeling like this. I don't want to have this hideous condition either but it's nice to finally have an understanding of why I have been feeling so bad.


----------



## Marlena

Hey, I'm 70 and just got diagnosed - 7 yrs ago I had and endoscopy colonoscopy and was clear.  Weird.  This is a great support group,  we all know and care.  I had a hernia repair about then with some twisted bowel, tight by my belly button.  At themoment, all is well, but you both are in my prayers.


----------



## Grumpy1

peluchde said:


> I had my first obstruction on my 52nd birthday!  What a shock!  I had been healthy all my life.  Doctors called it a fluke.  Three years later, I had 5 obstructions in less than a year and I was sent to the Mayo Clinic in Jacksonville.  They finally diagnosed me with Crohn's and told me it was "bimodal" - occurring in the early 20's and later in the +50's.  My older sister suffered for many years with Crohn's and passed away at age 44 from sepsis due to a bowel perforation.  Needless to say, I was/am not thrilled with the diagnosis.  I've been on Pentasa, Prednisone, Entocort, and now Humira.  GI would like me to start Remicade infusions, but I am frightened.  Anyone with advice for me?


Peluchde, welcome and I'm really sorry that you are in the situation that you are in.  As for Remicade I couldn't take it unfortunately but the first 3 infusions that I took really worked for me.  You might try the remicade support group on the forum you will get some great advice there - there are a lot of long time remicade users that post.  It isn't any worse than the humira it just takes a little longer to get into you.  Good luck and keep us posted on your journey.  Thinking positive thoughts for you.


----------



## peluchde

Thank you for your nice response.  If you don't mind me asking, can you tell me why you couldn't continue the Remicade.  I have heard of so many problems.  My veins are small and they "roll" or so I've been told.  right now, I'm going on Day 21 with a pillcam stuck in my small intestine.  My GI ordered another colonoscopy prep for tonight, but as it is after 8PM right now and I have to be up at 5AM, I'm putting it off until tomorrow.  This will be the 4th prep I've had since all of this started.  I've got such anxiety thank you for your kindness.


----------



## Whit

Anxiety is par for the course. I took a great 8 week class in mindfulness based stress reduction and have viewed a lot of DVD's on the same subject. As a result I meditate every day and my stress and anxiety levels have gone down a lot.
Where exactly have the obstructions been located?
Good luck,
Whit


----------



## Terri311

Very happy I found this group.  I was diagnosed at 77 and my doc said I was the biggest surprise of his career.   Not very pleasant for me as he is a gasto prof at the university, had me feeling very odd.  

I am very active, always have been and I will deal with this one way or another.  Have had lots to deal with before and I don't plan to let this get me cornered.


----------



## Marlena

Good for you, Terri, attitude really helps.  I have always been healthy but suddenly I've been hit with a bunch of biggies - hernia repairs that didn't work, detached retinas, cancer and now this.  But never give up and don't let the bugger win!  That said, my heart goes out to long term sufferers.


----------



## scottsma

Terri311 said:


> Very happy I found this group.  I was diagnosed at 77 and my doc said I was the biggest surprise of his career.   Not very pleasant for me as he is a gasto prof at the university, had me feeling very odd.
> 
> I am very active, always have been and I will deal with this one way or another.  Have had lots to deal with before and I don't plan to let this get me cornered.


Welcome to the forum Terri.

                               I like your attitude.go girl !!! :dance::dance::dance:


----------



## Grumpy1

peluchde said:


> Thank you for your nice response.  If you don't mind me asking, can you tell me why you couldn't continue the Remicade.  I have heard of so many problems.  My veins are small and they "roll" or so I've been told.  right now, I'm going on Day 21 with a pillcam stuck in my small intestine.  My GI ordered another colonoscopy prep for tonight, but as it is after 8PM right now and I have to be up at 5AM, I'm putting it off until tomorrow.  This will be the 4th prep I've had since all of this started.  I've got such anxiety&#55357;&#56862; thank you for your kindness.


Sorry it took me so long to respond, I have a problem with drugs.  My body tends to reject everything and so far it has rejected most things that we have tried to get my Crohn's under control.  I had a really bad allergic reaction to Remicade (serum sickness), but I also had an allergic reaction to Imuran which caused pancreatitis.  The nurses that do the Remicade injections are really good at least they are here I didn't have any issues with them and from the things I've read on the forum most of the people that have the infusions even those that have the issues that you have don't have a lot of problems with getting the treatments, they do this for a living and they are good and for the most part kind and gentle.  I think they understand better than most that you are not there because you want to be.  

How did your colonoscopy prep go.  Anxiety is normal and eventually you will relax and look back on all of this and smile.

Take care of yourself and keep us posted.


----------



## dave13

scottsma said:


> Welcome to the forum Terri.
> 
> I like your attitude.go girl !!! :dance::dance::dance:


I wholeheartedly agree.


----------



## Terri311

I just finished a 7 day high dosage of Valtrex because I was starting shingles near my right eye.  Just what I needed.  Sharp doc I have I wasn't there for that but to discuss the Crohn's diagnosis.  He noticed this near my eye, lucky me. 

It did do a bit of a number on my gut but seeing is sort of important to me so I continued, and one week, 3 eye specialists later I am off the stuff.  

Has been good on the pain front, my I can even poke my stomach without screaming, today no pain but am up close and personal with the toilet this morning.  I ate a few vegetables, they came through just about undigested.  Not doing that one again.  Asian vegetables out of the question.  

Tomorrow I am trying roast beef, mashed (no dairy) potatoes and carrots and green beans.  We shall see.  Also making a gluten free apple crisp.  I know, I am crazy but I am having a good friend over who is facing a probable cancer diagnosis which he shall find out about on Tuesday. 

I feel really good on no gluten, no dairy, no seeds and grains and very few vegetables.  Still losing weight but a lot slower than previously. 

Lucky I was overweight as I lost 50 lbs in less than 3 months.  It is expensive, non of my clothing fit any longer.  

When I get back from a month's trip to Montreal I am going on Entocort for 1 month.  Have a talking sugar monitoring system as I get diabetic on any of that stuff, also have a weekly blood test at the lab.  

This is all new to me, I am so tired of thinking and dealing with my body.  Anyone have any advice on this as I am not at all dealing with this too well.


----------



## Gail Jothen

Entocort was a big help to me,  but being a steroid I had to wean off it and my symptoms came back and I lost 7 pounds which makes me look anorexic.    So now I am on mercaptopurine,  but it takes time to take affect.   I am on a VERY limited diet as most foods cause me pain.  I'm surprised the veggies bothered you.   Were they cooked well?  Did you eat slowly,  chewing well?    I've had to get a new wardrobe too, but shop at used clothing places.   And I am happy not to have so many clothes.


----------



## Terri311

Cooked well and chewed well, I know it is strange but I think I am dealing with a 'residue' & fiber problem also.  

My dietitian has me writing everything down, time, hours slept, quality of sleep, BP, food intake, quantity, supplements, GI situation and BMs/types. etc. 

Have been doing this now for over 2 months.  He puts it in the computer and is trying to find some correlation etc.  It does get quite tedious but I do it, they are trying to help me and understand what is going on.  

Have quite a team around me, the specialists (GI, Eye, BP, Gyn), my family doctor, dietitian, Occupational Assessor, and a Social worker.  I think they figure they will inundate me.  The last two I could teach a think or two, lol.   At times it is just too too much.

I shop in similar places Gail, luckily I can sew well and have fixed some of my jeans.


----------



## Gail Jothen

Terri311,  have you tried any specific diet?  I have:   FODMAP and now Crohns Pain Free Foods, both of which I found on the web.  I use both together.  I used FODMAP first and it helped but not enough.   With the Crohns I seem to be doing better, but have only used it correctly for 10 days.  I ate some totally wrong foods 3 times:   nuts,   peppermint tea, and yesterday processed st potato chips and paid for each with several days of pain.   I see a nutritionist (my dr's command) on Monday and am curious as to what she will say.....


----------



## Phartologist

Hey guys & gals....
I was diagnosed in 2007 at the age of 66.... I had symptoms all my life but the diagnosis came very late... at 40 was hospitalized for 7 days with a naso tube because of extreme cramps but no diagnosis then.... in 2007 the gastro had the correct tests done and the diagnosis was crohns AND IBS.  I now cannot consume anything with fiber OR anything with hardness... potato chips are hard and NG.... anything with fiber is NG... I live on eggs and poultry.... certains spices cause terrible cramps... certain foods work well one day but are terrible days later! the illness is unpredictable.. I found that mercatapurine [6MP] to be a svior along with Pentasa and Prilosec.... if I am careful problems are kept to a minimum... btw, eating out is always and experience in pain/cramps/and of course D..... careful food selection can make this illness go into almost remission..... GOOD LUCK:ymad::ymad:


----------



## Whit

Hi all,
I am curious about where each of you is experiencing Crohns. My inflammations are in the last four inches of the terminal ileum and in the mouth. I do get some negative digestive symptoms when I eat the wrong foods but not like you all are experiencing. My main concern is the wrong foods or too much fiber causing a blockage again.
So again, where is your Crohns?
I hope we can all find foods that work.
Best 
Whit


----------



## LodgeLady

Terminal ileum and probably in the small intestine. My GI can't do a pill can cause his equipment is broke


----------



## jmrw

I have been told it is in the terminal ileum.  I too get bowel obstructions. Afraid to do solids.  I have been mostly on soft foods, melt in your mouth cheeses, and liquids/smoothies.


----------



## orangesunflower

Mine is in the terminal ileum that is where the small intestine meets the large intestine.


----------



## Gail Jothen

good question.  I only know my ulcers are/were in the small intestine.  I will have to inquire next dr visit.   I also have a lot of stomach pain.   Anyone else?


----------



## Terri311

I did have a lot of stomach pain, but after taking probiotics my pain has mostly subsided.  Ulcers in small intestine, the frequency comes and goes from 7+ times a day to not at all.  The pain and frequency do not seem to be linked. 

I don't know the parts of int intestines but did see a picture of an ulcer where the small intestine joins the large one.  I also sometimes have pain on the left side and a large lump there.  It hurts and if I massage it counter clockwise it seems to plop, the lump disappears and the pain subsides.  Figure it could be a twist in there, maybe not though as I am not to up on it all. 

If I hurt I try something different, if I run to the bathroom a lot I eat differently.  So far my comfort food seems to be rice. Go figure.


----------



## orangesunflower

My pain is mainly on the right side - ileum area, side by hip and below breast area. Some days I also have pains and pressure in stomach -gas in stomach. Most pains are caused from the narrowing in ileum from scar tissue. The pains are worse now and my Humira isn't helping enough because it is not just inflammation now, but mostly scar tissue. I am seeing a surgeon in a couple of weeks to schedule surgery. It is a tough decision but I have been putting up with this for over a year. Not long compared to others I know. But too long for me.


----------



## Diver jude

Hi people, very new to this so any advice gratefully received , was diagnosed 6 months ago with crohns and recto vaginal fistula. Bad reactions d and v , to 6 mp and azathiripine,prednisolone hospitalised for a month.  started on infliximab and had anaphylaxis after 4th infusion , never had any improvement in symptoms and now running fever as well. Doc wants me on anti biotics and steroids again , despite previous reactions to prednisolone , :blush: spent many years with what I thought was ibs . Just had 52nd birthday and wondering if I will ever feel normal again :sign0085:


----------



## scottsma

Sorry I'm not the one to give you advice Jude, but I just wanted to welcome you to the family,and offer my support.Someone will be along soon who understands your particular situation,and can help.Best wishes.


----------



## RNGirl

I'm so sorry you are struggling with all of these issues.  I pray things start to turn around for you.  Hate this disease.  Sending you my support


----------



## DougUte

Diver jude said:


> Hi people, very new to this so any advice gratefully received , was diagnosed 6 months ago with crohns and recto vaginal fistula. Bad reactions d and v , to 6 mp and azathiripine,prednisolone hospitalised for a month.  started on infliximab and had anaphylaxis after 4th infusion , never had any improvement in symptoms and now running fever as well. Doc wants me on anti biotics and steroids again , despite previous reactions to prednisolone , :blush: spent many years with what I thought was ibs . Just had 52nd birthday and wondering if I will ever feel normal again :sign0085:


Hi Jude.  I have had every crohns symptom you mentioned with the exception of the recto vaginal fistula (I'm male). I have had a fistula between loops of the small instestine. I am so sorry you are having such problems with your medicines. I am almost 52 and I too spent many years with being told I had IBS. Unfortunately I can't answer if you'll every feel normal again, but before my diagnosis I was asked by my GI when the last time I felt normal was, and I could not figure it out. It had been so long that I did not remember what normal was. 

My GI has me on Entocort instead of predisone. I was wondering if this could be an option for you. Entocort is a steriod, but is designed to be released at a particular point in the digestive tract. It acts topically on the crohns inflammed area around the terminal ileum. It is not a global steroid like prenisone is, maybe you would have less of a reaction to it. I am not a doctor, so bring this up with your GI. 

Also, have you tried another biologic like Humira? 

I hope things start working better for you. Get well soon.


----------



## Gail Jothen

Hey Jude,    I am trying to accept the fact I will never be normal again.   A lot of people are in our boat but that does not make me feel better.  I want to agree with DougUte that Endecort is a much better steroid for Crohn's.  The side effects are MUCH less and it has helped me greatly.   The problem is one cannot be on a steroid forever...or for very long so your dr. will have to keep you trying different medicines, but there is a lot of possibilities so don't let him give up.   Be persistent!


----------



## Diver jude

Hi all, just a query , but after having anaphylaxis after my fourth infliximab infusion, I was taken of it and started on prednisolone for next 8 weeks starting on 40 and weaning down 5 a week, but in have been feeling very nauseous and dizzy , horrendous diorrea , and bizarrely tingling like nettle rash in tips of fingers and toes, which have now been peeling for a week and cracking despite moisturising etc . What's going on ??m


----------



## Gail Jothen

Aren't we having fun?   This week has been one of flare-up.   I just can't seem to get rid
of gut pain.   Today has been horrible.   It is my 10th week of Remicade and a year of Endicort, but for some reason neither are making a difference!   To share your phrase,
"What's going on?"    We are supposed to live in the present but I am waiting for the future when my pain is gone!   I have no idea why your prednisone's side effects are as they are but I know prednisone is a very powerful drug....and side effects are to be expected.   There must be many reading this who have been on prednisone.   What say you?   I hope you told your doctor.


----------



## Marlena

Hey Jude( scuse me, couldn't resist).  Wonder if you need a second opinion?  This is the crappiest disease.


----------



## Diver jude

So after speaking to my crohns nurse , an appointment is scheduled with the surgeons re my recto vaginal fistula, so maybe that's the way forward because the drugs just seem to make things worse with all the side effects , what a bizarre condition this is , it doesn't play by the rules lol


----------



## Gail Jothen

Feel better today, but I am eating hardly anything and I look anorexic and feel tired but at least I am not in pain.   Called my dr but no one called me back.  I think I need another Remicade infusion,   even though it is 4 weeks too early.    Anyone else need Remicade more than every 8 weeks?


----------



## scottsma

Having a minor (hopefully) flare.Started with blood,pain and nausea yesterday.No blood today, but a niggling pain in front of left hip.I've been very fortunate until this year,now things seem to be changing gradually.I'm waiting for Gall bladder removal, due to polyps.
It's been almost 3 months now,so may be imminent hahaha.I hope you're all feeling a wee bit better today.


----------



## chuckmya

Hi! I'm not new to the forum but new to the group! I was officially diagnosed last summer just before turning 50! So hopefully that's ok? I've had major issues for years...several small bowel obstructions, and 5 resection surgeries and a temporary ileostomy that was reversed several years ago! Had been living undiagnosed for about 15 years due to pathology reports been lost! So when I developed a GI bleed last year it sent me searching for answers that the docs here could not provide! So off to MGH I went to search for answers from their IBD clinic. In the process of having records transferred I realized that pathology reports from 2000 were missing. I had 6 inches of small bowel and 12 inches of colon removed @ that time with a temp ileostomy. So finally I was able to locate those all important  records that had been archived/misplaced @ a local hospital. Those records did indicate CD which I obv could not confirm each time I went for a 2nd opinion! MGH confirmed CD through a colonoscopy and  started me on Enticort and humira....tapered off of Entocort and am doing bimonthly Humira injections. Feeling better than I have in years including more energy, fewer symptoms etc. def many more good days @ this point in my life than bad!


----------



## gtc45

i am 69 years old and i had suegery .i am on cimzia .and i am married with one daughter.I mam afraid of her getting crohns.  i am interested inanyone with similar problems to share emails gtc45@verizon.net


----------



## Bunty

Hi Scottsma, remember me  Sorry you're having problems.
I was diagnosed with ulcerative colitis last June, but last week, after seeing the proper consultant rather than a registrar or locum at the hospital, it has been decided I have crohns. I'm six weeks into a flare up, the first I've had since it all settled down last autumn, and am now on an eight week course of steroids, and azathioprine. Oh and B12 injections every other day for two weeks.
A question....does this disease behave differently in us older folk in terms of being more rapid in progression and severity, or less so because our bodies have slowed down?
Bounty x


----------



## scottsma

Hello Bunty,yes of course I remember you.......I'm sorry your having a flare,but hopefully the steroids will clear the inflammation and get you back on track.As to your question about it behaving differently as we get older,I really can't say.But I am VERY grateful that it didn't rear it's ugly head earlier.There are far too many crohnies who are just starting out on lifes journey,who have so many problems.I have been  fortunate in that,apart from regular  (manageable)fares since dx 9yrs ago,It hasn't interfered with my life too much.Recent tests showed a progression from Proctitis to Crohns Colitis but all's well for now.Except of course,during tests they discovered Gall bladder polyps,for which I have a pre op. assessment next month.I hope your set back hasn't stopped you from enjoying time away in your caravan.Get better soon.


----------



## Bunty

Hi Scottsma, very nice to hear back from you so quickly 
Have you had a change in your meds to treat your new diagnosis?
They've discovered I have gallstones too, maybe it's an age thing!  Oh, and kidney stones as well. Never ending is it??
We were hopeful that this year we'd use the caravan a lot more than last but, so far that's not been the case, it'll probably be another few weeks before we can get there again due to B12 injections and weekly blood tests.
I agree with you, I really do feel for those youngsters to have to deal with all this.
Bunty x


----------



## scottsma

No my meds haven't changed,my choice.I feel I can manage ok for now.
But I am constantly aware of little twinges and other signs,that I might be in trouble.
I think we on the Forum all do that though.Gone are the days when we could take our health for granted eh? How long have you been on the steroids and are you having any side effects ?


----------



## Bunty

Been taking them since last Wednesday, only hot flushes so far, but having  taken three months of them last year I know the side effects ramp up after a while...not pleasant but needs must.
The other delightful thing is I've developed a huge pile due to using a steroid foam enema (which didn't do a thing), never had a pile in my life till this thing appeared. Am just considering a GP visit as germaloids cream isn't working. Have you suffered? Any suggestions??
Bunty x


----------



## scottsma

Just one small one,but not much trouble.EXCEPT...while prepping prior to a colonoscopy.
Oh my goodness !!!!!  Preperation H might work for you,and if it doesn't work on your hemmy,I've heard it does wonders for eye bags,if you have them as well, of course.hahaha
Some celebs use it to tighten up.Whisked egg white works as well,but not on your piles


----------



## Bunty

Didn't fancy smearing my nether regions with white of egg  so have bought some germaloids suppositories to try for a week. If they don't work then it's off to the GP to see if she has a miracle cure.
Bunty x


----------



## scottsma

Bunty said:


> Didn't fancy smearing my nether regions with white of egg &#55357;&#56861; so have bought some germaloids suppositories to try for a week. If they don't work then it's off to the GP to see if she has a miracle cure.
> Bunty x


Don't forget to share if she has.....


----------



## gtc45

has anyone taken colestipol.  it has been giving me pain but it made my bms less.  i am also on cimzia.  one doctor told me not to go on entivio.as long it keeps my crohns under control dont worry about your bms.


----------



## peluchde

I've just started Entyvio.  Why did your doctor say not to take it?


----------



## Marlena

I am so annoyed.  My husband had a minor operation today and probably because we got up so early, I forgot to take my own food.  Went to the cafeteria - because of all the things I shouldn't eat, all there was ,was yogurt and tea.  In a hospital, which has lots of people with special dietary needs and which if you don't, has a great menu.  Good thing it was a quick in and out.


----------



## Terri311

Have been doing my own experimentation. Have been taking 2 Billion CFU Lactobacillus Acidophilus at the start of every meal.  

The day after I started I stopped having diarrhea and pain.  Forgot to take it for one meal and lookout.  So far so good - I will continue this way.


----------



## scottsma

I've just started 20billion acidophilus.And because I'm losing my Gallbladder soon,I've been taking digestive enzymes for about 6 weeks.I do feel better than usual,but sometimes it's the "calm before the storm"I've also been told I'm borderline diabetic so my diet is a problem now,regarding crohns and the other two problems.

Lifes never dull.


----------



## Bunty

So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
I confess to knowing little or nothing about this supplement, I'm just asking the questions 
Bunty x


----------



## LodgeLady

Bunty said:


> So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
> I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
> I confess to knowing little or nothing about this supplement, I'm just asking the questions
> Bunty x


I don't take any of that stuff.


----------



## Marlena

My doctor and nutritionist both feel this is a good thing to do, as our own intestinal flora are not healthy.


----------



## Terri311

My doctor and my dietitian said it was a good thing to try out.  They mentioned that there are a few blind studies being done on Crohn's patients with probiotics.


----------



## scottsma

I have used probiotics in the past and have had no adverse effects.If I use something else,ie: another supplement or diet exclusion/inclusion,I stop the one I've been on longest otherwise it's difficult to know what's working and what's not.
I've had no problems with anything except some food. Alas,it's all the food stuffs I love !!!


----------



## Bunty

It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment. 
I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
Bunty x


----------



## scottsma

Bunty said:


> It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment.
> I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
> Bunty x


Keep us updated Bunty,it's always interesting to hear what others have been advised (and confusing)!!!


----------



## sammiedabird

I was diagnosed with Microscopic Colitis found during my colonoscopy. Entocort always worked but the thing is with that medicine, one day it will no longer work. I've had explosive diarrhea for six months now. My son was getting married and I was worried about making it through the wedding and there was a 100 mile trip to get there and nothing was working!

Out of desperation, my GI doctor put me on Cholestyramine, a powder that is mixed with juice and is made for lowering cholesterol. It is the only thing that has helped me. The side effect is constipation. If I become too constipated, I go off of it for a day or two and of course, the diarrhea returns. We're going to continue with this regimen until the colitis runs its course, if it does. 

So much for my Golden Years!


----------



## Marlena

Not a lot of fun, is it?  It's not much fun to have to always be thinking about your rear.


----------



## Gail Jothen

I fortunately don't have diarrhea with my IBD,  but I have such terrible pain behind my belly button I cannot function very well.   My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad  that I am hanging on to living with my fingernails...
My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer.   I am surely not eating enough.   Right, these are my Golden Years!


----------



## Terri311

I continue to take two types of probiotics.  One extra strength at breakfast and the other meals I take a complete one.

At first I tried the extra strength at every meal but ended up constipated.  Now this system seems to be working best and is 95% effective.  I no longer have diarrhea unless I forget to take one.


----------



## scottsma

Hi,and welcome to all of you  above.Sorry you have to be here at all of course !!!

I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?oo:


----------



## peluchde

Gail Jothen said:


> I fortunately don't have diarrhea with my IBD,  but I have such terrible pain behind my belly button I cannot function very well.   My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad  that I am hanging on to living with my fingernails...
> My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer.   I am surely not eating enough.   Right, these are my Golden Years!


I must have a similar type of Crohn's.  My problems are pain in that same area, radiating across, constipation, obstructions,  and now possible rectal prolapse.  I've tried lots of drugs and now I'm taking Entivyo infusions.  Just had my 3rd one, but not sure this will be my miracle.  Just have to wait.  Are you still working?  I'm finding it harder and harder each day.


----------



## Terri311

scottsma said:


> Hi,and welcome to all of you  above.Sorry you have to be here at all of course !!!
> 
> I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?oo:


I've had my gallbladder out for many years but it is only the last couple of years that I don't seem to be absorbing fats at all.  I also have a lot of pain if I eat most vegetables, but carrots, potatoes and beets are OK in moderation.  I am Celiac and allergic to Casein so taking any of those causes great gas and pain as well as diarrhea.

I am surprised that I seem to be accepting these increasing limits, though last night at a restaurant that serves very good buns I really was not a happy camper.


----------



## Bunty

Get well soon scottsma, hope you feel better each day 
Bunty x


----------



## Gail Jothen

peluchde,  I am retired except I am a church organist so do subbing jobs.   There is no way I could work feeling the way I do.  I've had this 5 1/2 years and lost 30 pounds the 1st 2 months and then another 10 since.   I was not diagnosed until Jan. '14 so just lived with pain and was given anti depression and anti anxiety meds for 4 years....which of course was no help, but the GIS i saw said I had reflux...the one I see now gave me a pill camera which saw 9 ulcers and I was finally diagnosed.  I have gone through a number of meds.  Now he told me I could have developed antibodies to the Remicade!  i don't see him for 3 weeks so just have to live through this....it is very difficult.   I pray a lot!  And Terri,  I don't seem to absorb fats either.   And they usually cause pain.   Have you heard of the FODMAP diet? It has helped me a lot, not with healing,  but with knowing what to eat and what not to eat.
Root veggies are the best for me, and spinach,  green beans, bok choi...no cabbage family.
Also it came take a week or 2 to get over the anesthetic you had for your gall bladder surgery.


----------



## ardreybill

Crohns @ 57.59 now and 2 flares in 6 months.Im going nuts because the meds they want to put me on have severe sides.Prednisone worked but they don't want me on long term.Cancer in 2011 and some of these meds may cause cancer. So I'm with you. I hate the thought of losing my independence.


----------



## Gail Jothen

I am having a TERRIBLE flare up,  can't eat,  can't do anything,  just lay on couch with heating pad.  I see my dr in 2 days;  hope he can make my life bearable.....


----------



## Grumpy1

Get second infusion of Entyvio tomorrow so far so good....all toes and fingers crossed, touching all sorts of wood etc.  Hope everyone is well.


----------



## peluchde

I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability.  I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do.  I'll be 60 in a few weeks and I've had 9 hospitalizations so far.  I can't function at work anymore.


----------



## Gail Jothen

peluchde:   I absolutely agree you cannot teach with Crohn's.   It is so disabling.
Best wishes and may God help you get disability.


----------



## aa9zz

I had to retire after 30 years of teaching.


----------



## BrennieJoyce

peluchde said:


> I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability.  I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do.  I'll be 60 in a few weeks and I've had 9 hospitalizations so far.  I can't function at work anymore.


Hello, I had to retire early because of Crohn's, too. And I got on social  security disability, but I had to get an attorney to do so. Unfortunately, it seems to be essential to have one before you will be approved. It took me almost 2 years, but I stuck with it and finally got approved.  Good luck to you, and I hope they get your symptoms under control.


----------



## BrennieJoyce

Gail Jothen said:


> I am having a TERRIBLE flare up,  can't eat,  can't do anything,  just lay on couch with heating pad.  I see my dr in 2 days;  hope he can make my life bearable.....


I just went through a horrible flare, and the only thing that saved me was prednisone. I'm still recovering in bed with some abdominal pain, but nothing like it was. My GI told me prednisone is the only thing that can help a severe flare. I hope you find some help soon. I know what sheer hell it is.


----------



## EastCoast902

I am in my mid 50's and diagnosed with Crohns on Tues of this week. I have had very loose stools for about 2 years which has developed into diarrhea all morning- every morning. And then severe pain the rest of the day & night which I guess is the digestive process. Some foods are easier than others, but all are proving problematic.  I am currently into what is a flare up- I think. Have only seen my GP, and was diagnosed by CT scan & blood work. Waiting to see specialist in 2 weeks for treatment options and scopes. I am depressed after reading these forums as to what may lie ahead. I'm not sure I can do this!!


----------



## peluchde

Thank you for your support.  I hired an attorney to help me through the SS Disability process.  Everyone has told me it will take 2 years, so I am prepared for the long wait.  Now, I just hope I can afford my health insurance while waiting.  Hard being sick, exhausted, and stressed, but at least I don't feel guilty about not doing my best at work.


----------



## peluchde

EastCoast902 said:


> I am in my mid 50's and diagnosed with Crohns on Tues of this week. I have had very loose stools for about 2 years which has developed into diarrhea all morning- every morning. And then severe pain the rest of the day & night which I guess is the digestive process. Some foods are easier than others, but all are proving problematic.  I am currently into what is a flare up- I think. Have only seen my GP, and was diagnosed by CT scan & blood work. Waiting to see specialist in 2 weeks for treatment options and scopes. I am depressed after reading these forums as to what may lie ahead. I'm not sure I can do this!!


You can do this!  You've had the symptoms for awhile and maybe now someone can help alleviate some of them.  There's lots of meds that work, but the problem seems to be that they stop working after awhile and you have to try something else.  Good luck to you


----------



## Terri311

I was diagnosed in January, I have fiddled around with probiotic - my diet (allergic to gluten and casein) and will be going to have a spiegle(sp?) hernia fixed on Tuesday. 

I am 77 years of age and I was devastated when I found out.   Now life is not a bowl of cherries but it is very livable and I still can have fun.  

Takes a while to find out how your body reacts, seems we are all different. 

It is doable for sure.


----------



## EastCoast902

Terri311 said:


> I was diagnosed in January, I have fiddled around with probiotic - my diet (allergic to gluten and casein) and will be going to have a spiegle(sp?) hernia fixed on Tuesday.
> 
> I am 77 years of age and I was devastated when I found out.   Now life is not a bowl of cherries but it is very livable and I still can have fun.
> 
> Takes a while to find out how your body reacts, seems we are all different.
> 
> It is doable for sure.


Thanks to both of you. It is all so Greek to me- the language, terminology, even body parts I never heard of!! Steep learning curve for sure. Today I ate eggs, toast, chicken noodle soup & salmon- I have some gurgling, but no great pain. Trial & error!!


----------



## Terri311

EastCoast902 said:


> Thanks to both of you. It is all so Greek to me- the language, terminology, even body parts I never heard of!! Steep learning curve for sure. Today I ate eggs, toast, chicken noodle soup & salmon- I have some gurgling, but no great pain. Trial & error!!


I find that when I have diarrhea if I eat something with rice in it I get a lot better, a lot less pain also.


----------



## Phartologist

Hi, I saw your posting about prednisone being the only thing to help... predisone is a very CHEAP steroid which causes many side effects.  There are some targeted steroids like UCERIS which is quite expensive for Medicare Part D people but it targets the terminal ileum where most Crohns happens..... about $10 per pill!

Good luck
:medal1::medal1::ysmile::ysmile:oo:oo:


----------



## Gail Jothen

Eastcoast902,  have you looked/tried the FODMAP diet?   It is a starting point to help one find the foods that trigger diarrhea.   I have used it as a baseline for 5 years,  since I first found it on FACEBOOK.   There is a book,  IBS Free at Last,  but it also helps people with intestinal ulcers as it deals with foods that cause gas and fermentation in the intestines.
It saved my life,  although did not make me healthy.  The meds I'm on, "endicort" right now,  have really helped but it seems this disease requires different meds for different people...frustrating for sure.


----------



## EastCoast902

Doing prep for 2 scopes tomorrow, have to drink another dose of Pico-Salax at 10pm....am I going to be awake all night?

Saw the Specialist and he is recommending Entocort or Imuran. I told him I would research them and let him know ( No drug coverage) . What has the experience been for folks with these. Apparently there is a 40cm section of lower bowel that is thickening. I guess the scopes will determine the level of damage or disease.


----------



## LodgeLady

EastCoast, I have taken Entocort and it is by far the better choice vs Prednisone.  It is not supposed to be a maintenance drug. Imuran would be a maintenance drug once under control from Entocort.


----------



## LodgeLady

I changed my GI and finally got a Pillcam SB. He is really questioning my diagnosis as I've also just been diagnosed as having colonic inertia. But hopefully the Pillcam gives me the final piece to this puzzle. I had the test Monday but I have not seen the pill pass. How long should I wait before being concerned?


----------



## RNGirl

Eastcoast 902:  I agree with the earlier post, look into the FODMAP diet.  I have fiddled around with other diets to keep my symptoms in check.  Tried Paleo, got worse.  Doing the FODMAP diet, realized I am a Fructose and artificial sweetener malabsorber.  Bad bloody diarrhea and systemic reactions hitting every body system for several weeks after eating these things.  It's not an easy diet to follow, but it's an eye opener.  I had no clue the foods I loved the most were making me very sick.  The goal is to know how much of the foods you react to you can have before you have a reaction.  I have had some flub ups for sure, but at least now I somewhat know what I CAN'T eat.  You have support here and you can do this.  I am depressed at times too, but we are all in the same boat and it could always be worse.  Take care and hang in there!


----------



## Gail Jothen

LodgeLady,  it does not matter whether you see or know when the pillcam passes.   The recorder you wear records everything the camera sees;  the camera itself is irrelevant after it has recorded your system.   Unless you want to sell it on eBay.. ha ha....it's a great tool. I was diagnosed after 4 years of pain with it.  Other tests showed nothing.  And, Eastcoast, I would take the Endecort first. Be sure to take it with food.  I learned that after months of taking it wrongly!


----------



## EastCoast902

Gail Jothen said:


> LodgeLady,  it does not matter whether you see or know when the pillcam passes.   The recorder you wear records everything the camera sees;  the camera itself is irrelevant after it has recorded your system.   Unless you want to sell it on eBay.. ha ha....it's a great tool. I was diagnosed after 4 years of pain with it.  Other tests showed nothing.  And, Eastcoast, I would take the Endecort first. Be sure to take it with food.  I learned that after months of taking it wrongly!


Thanks,,,just waiting for my drive for the scopes. Starving & Scared $hitless (pardon the pun).


----------



## scottsma

It'll be over soon.Most people would agree that the prep.is the worst.Best wishes.


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## Scipio

From last July:
"A question....does this disease behave differently in us older folk in terms of being more rapid in progression and severity, or less so because our bodies have slowed down?"

The answer is yes, CD behaves differently in older onset patients.  Some of the differences are good news and some are bad.

Good news: lower risk of complications such as fistula or stricture in older onset patients.
Bad News: greater risk of lymphoma developing as a side-effect of taking azathioprine/6MP.  Some GIs will not prescribe aza in people older than 60 or even sometimes 50 unless there are no other good alternatives.


----------



## fuzzy butterfly

Oh well glad i was 50ish when dxd. Might miss out on fistulas n strictures.. and i cant tolarate aza .Not tried 6mp,maybe i shouldnt if offered it at some point.   Currently on no meds after resection march this year.
Best wishes to all


----------



## peluchde

Just came back from my appointment at the Mayo in Jacksonville.  I have a local doctor, but I never feel comfortable with him and I've changed practices twice already.  My damage cannot be seen by endoscope or by colonoscopy.  It is in between the areas they can view.  Last pillcam I swallowed stayed in for 42 days!  It showed all the ulceration that is causing me pain.  Mayo says no more pillcam so.  A double balloon enterography is scheduled for next month.  My local doctor scheduled an MRI w/contrast and it showed no areas of thickening, but it's unable to show ulceration which I'm sure is causing my pain.  
As far as drugs, I have seemed to be on them all. For me,  Entocort is preferable to Prednisone.  I can't take Imuran as my liver enzymes went sky high within a week or so.  Humira stopped working after 4 1/2 years and now I'm trying Entiviyo.  My journey with CD consists of small bowel obstructions and days of constipation followed by diarrhea.  Love when I have some normalcy in my life.


----------



## EastCoast902

Scopes over and were surprisingly quite easy with lots of sedation!!  I was worked up for nothing!! Referral coming for GI specialist, but Scope Doc gave me a script for Entocort- 9mgs in the morning and 9 mg's at night....I didn't think that dosage seemed right, based on my research. Called the pharmacy to confirm and he said, no, not right....told me to just take 9mgs in the morning and he would call Doc on Monday.....sigh....doesn't give me much confidence in the Doc. Glad for the GI referral. The scope Doc is a general surgeon who just happens to do the most Crohn's surgery in my town. 

But since the scopes, I have had no measurable pain, I suppose because I am somewhat empty, slowly eating what I know I can tolerate. 

I am a foodie, and love preparing meals for the family & friends. Having a hard time doing planning for the holidays....the new normal. Yes, I am feeling sorry for myself!!  I'll get over it.


----------



## Gail Jothen

peluchde,   so sorry you are still in pain.  I, too,  was undiagnosed for 4 years as the colon and endosccope showed nothing.  Only the pill cam showed the 9 ulcers which had been giving me pain for 4 long years.   This is such a difficult disease!


----------



## johnsmclean

Diagnosed with indeterminate IBD (mixture of Crohn’s and UC) at 54 years old.

Had an endoscopy as part of bowel screening programme in Scotland and was diagnosed with UC. Had had bad diarrhoea, was losing weight and anaemic. 

Initial diagnosis was mild to moderate UC following and given aminosalicylates and appointment to see consultant two months later. Could not make that date and luckily got an appointment for a month post-endoscopy. 

In that month, started to vomit, pass blood and had very frequent diarrhoea. Lost well over a stone. When consultant saw me he put me on oral steroids and said if things did not improve in three to four days then call the IBD nurses. 

Went down hill very quickly and as not drinking or eating was taken into hospital within three days.

Was put on IV steroids and told that this would  “melt away inflammation”. Had x rays, CT scans, MRI scans. Things got even worse. Lost more weight. 

They decided to do another endoscopy after a week in hospital and in the four weeks since being diagnosed with mild UC GI tract was now badly ulcerated and much more inflamed. Next day put on infliximab. Told may take several weeks to kick in and was a bit down about this as was not improving.

Within three days of infilixamb started to feel better and diarrhoea became less frequent. Within a week was eating and discharged from hospital. And normal bowel movements. 

Put on 15+ pounds in 6 weeks and feel brilliant. Continuing with infliximab infusions but cannot get azathioprine as liver is a bit of a mess. 

Cannot praise the NHS enough for what they did for me. 

Also, got very lucky as responded very quickly to infliximab. Fingers crossed stay in remission.


----------



## scottsma

Hello and welcome. I'm very happy that you're feeling better. Long may it last. It's good to hear positive feedback,it gives hope to those who may be struggling with this dratted disease.But please don't get to complacent, as crohns can be sneaky and pounce when you're least expecting it. Mind your diet and stress levels. Best wishes.


----------



## johnsmclean

scottsma said:


> Hello and welcome. I'm very happy that you're feeling better. Long may it last. It's good to hear positive feedback,it gives hope to those who may be struggling with this dratted disease.But please don't get to complacent, as crohns can be sneaky and pounce when you're least expecting it. Mind your diet and stress levels. Best wishes.


Thanks for reply. Maybe have been too complacent. All good so far. Have a good New Year.


----------



## FloridaJ

Hello! I am 57 and was diagnosed in the late 1980's after a few years of symptoms. But had a couple decades of quiescence before major symptom return. So I am like a hybrid of both early diagnosis and later resurgeonce. 

I was originally diagnosed and treated back in the day when "flares" were treated to delay the next surgery. Now it is a different paradigm. I am now facing the prospect of another surgery for chronic and active disease. 

It is very isolating being a middle-aged/older Crohn's sufferer as there are not many places for discussion and support - as we are not as connected as the younger folks. Thanks for this place!


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## fuzzy butterfly

Welcome Florida j the sorry you are back to being unwell. I am an oldie to haha. I know what you mean on the connected front. I struggle with the modern technology so that doesn't help. Tho I can do the basic as it seems so can you. I hope that if you have surgery it helps you greatly to feel much better. Sending support and best wishes. We are here to help as much as possible. Feel free to ask anything you need to know. I am sure someone will be able to help. Take care


----------



## scottsma

Hello and welcome to you.It's sad that you are suffering again, after such a long remission.
You probably were hoping you'd seen the end of it, after all that time.
One good thing (?) is that you will know what to expect,more or less.Things have progressed since you were first diagnosed,but I think they still try meds etc. first and only operate as a last resort.I'm sure someone will be along soon with more advice,and you will also get lots of support.Of course, you will also be a help to others with your past experience.Best wishes,hope you feel better soon.


----------



## Grumpy1

Evening all, sad to see so many new faces here, and especially for this reason.  I'm just dropping in to say hey and see how everyone is.  Still struggling with drugs but still keeping on.  I hope that you all have a wonderful week and that things get better for all.


----------



## fuzzy butterfly

Ye Grumpy it is sad that we are collecting new members so rapidly. Though its good they found our motely crew, now they wont feel alone or not understood. They are now in touch with people who really know how it is. Who will give love,support advice n freindship.
So it aint all bad they are here. . Have a great week yourself Grumps. :hug:


----------



## Grumpy1

Mandy,
It is good that they found our motley crew, just the reason is unfortunate.  There is no doubt that they will find friendship, support, advice, and kindness here in abundance.  That is the coolest thing about this forum, someone, somewhere on here has experienced what you are going through right now and will have some idea on how to get through it.  I have made some very special friends and appreciate every day that I found them so you are correct without this forum  it would be much more difficult to face this nasty disease alone.


----------



## fuzzy butterfly

Hey Grumps nice to see you  hope you are doing well..
It very true this site is the BEST. Such lovely friendly helpful people here. I feel like I have found a new family here. Who i care for deeply. Made some very good friends myself. For a site about crohns i also find it very uplifting too. The humour and banter cheer up my days a lot. It is most appreciated as you say. Wishing you good health Grumps. :hug:


----------



## SB7

Diagnosed 2008, at 53.  
Just started this posting thing yesterday, and found it to be friendly and helpful to communicate with others dealing with the same or similar issues, although it will take some time to get use to it.  
I'm only on Pentasa at this time.  Main issues during flares are severe abdominal pain due to strictures. Proper eating for me and stress reduction seems to help, although my GI states next time I"ll need to have surgery or stronger medications.  
Glad to be connecting with this forum.


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## ronroush7

Glad you are here but sorry you have this disease.


----------



## scottsma

Hello and welcome.You've come to the right place for support and advice.Nothing Crohns related is taboo.There is always someone who can empathise with you and your symptoms.Take your time and have a look 'round.There is to much to take in at once,and I will advise you not to get alarmed.We are all different,(crohnies mantra,) and that means symptoms,diagnosis,meds,surgery,diet and lifestyle.Best wishes.


----------



## SB7

I do appreciate all the welcomes.  Yes, there is a lot to take in with all the support groups and variety of people with different issues etc.  It seems like a helpful, caring forum to be able to talk with(text) those dealing with similar health concerns.

Thanks again for all the welcomes from everyone.


----------



## RNGirl

Hello everyone, I haven't posted in a while.  Hope everyone is putting up a good fight and feeling well!  I need input and advice:

Anyone have a CT Enterography to assess the small bowel and have an intolerance to artificial sweeteners?  I was challenging the FODMAP diet and had a horrible flare to artificial sweeteners.  It put me into a flare from just eating a few tums (generic brand) and some Walgreen's brand Maalox.  The contrast has like Sorbitol or something in it.  I know I need to do this test for diagnostic purposes, but wondered if anyone else was able to tolerate and get through it with this intolerance or did the radiologist accommodate you and use something else?  Thanks so much!


----------



## ronroush7

I am sorry this happened to you.


----------



## Grumpy1

mandyk said:


> Hey Grumps nice to see you  hope you are doing well..
> It very true this site is the BEST. Such lovely friendly helpful people here. I feel like I have found a new family here. Who i care for deeply. Made some very good friends myself. For a site about crohns i also find it very uplifting too. The humour and banter cheer up my days a lot. It is most appreciated as you say. Wishing you good health Grumps. :hug:


Thanks Mandy,

Sorry it took me so long to answer you, I was busy doing year end at work.  I agree with the humour part of your post of which you are a great part and I appreciate you greatly.  Your unfailing cheer is nice especially on low.  Good health to you too girl!:ghug:


----------



## ronroush7

Amen


----------



## fuzzy butterfly

Hi Grumpy. No worries on the reply. We all have other things to be busy with  Thanks im doing ok at the mo.
I hope you are doing ok and keeping as well as possible.
I try to keep humour a part of my life, as i know i feel better for a chuckle,so hopefuly it will help others feel a little better for a wee while. 
Take care :hug:


----------



## scottsma

Hi Grumpy,I was thinking about you earlier today.Good to see you.


----------



## erwinrosen

I am 67. I was diagnosed during routine colonoscopy a few years back, which was a shock since I did not have any symptoms. Even up today my symptoms are mild, no pain, but on and off diarrhea. I have been advised by more than one doctor to NOT start medication, which I have gladly agreed. 
My challenge, at least up to now, is to manage my diarrhea, which I have tried to do by minimizing carbs, specially bread and pasta. I though this will help because of what I read on intestinal inflammation diseases, i.e., the specific carbohydrate diet, etc. But frankly I have not reduced carbs enough to see if it works, so I do not know if that is a solution and unfortunately continue to struggle with diarrhea. Does anyone out there have an idea?


----------



## ronroush7

erwinrosen said:


> I am 67. I was diagnosed during routine colonoscopy a few years back, which was a shock since I did not have any symptoms. Even up today my symptoms are mild, no pain, but on and off diarrhea. I have been advised by more than one doctor to NOT start medication, which I have gladly agreed.
> My challenge, at least up to now, is to manage my diarrhea, which I have tried to do by minimizing carbs, specially bread and pasta. I though this will help because of what I read on intestinal inflammation diseases, i.e., the specific carbohydrate diet, etc. But frankly I have not reduced carbs enough to see if it works, so I do not know if that is a solution and unfortunately continue to struggle with diarrhea. Does anyone out there have an idea?


Have you tried a food diary to see what foods aggravate your system?


----------



## erwinrosen

ronroush7 said:


> Have you tried a food diary to see what foods aggravate your system?


I understand the concept of food elimination, etc., but frankly I do not know how to do that. Is there a methodology that I can follow.


----------



## ronroush7

Write down what you have for breakfast , lunch and dinner.  Note if any of these foods send you to the bathroom.  My chiropractor usually has me break my diary down into each meal and what I ate including snacks.  He also has me write down how many times i went to the bathroom and how firm your stools are.


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## ronroush7

I was actually diagnosed when I was 34.  I am now 59.


----------



## erwinrosen

My gastro Dr tells me that about 15% of the Crohn's' patients do not get any major symptoms and apparently I am one of them. Time will tell, but apart from the diarrhea issue, which I will try to minimize/overcome I do not suffer from any other issues. 
I see that you take meds. Why do you need to check the food you eat to control diarrhea? Do the meds not control it?


----------



## ronroush7

I know I can't tolerate certain foods.


----------



## scottsma

Hello and welcome.I am very careful with my diet.Can't eat grease.most veggies etc.  Gall bladder out last year,and was also diagnosed borderline diabetic.That is now normal.
I have bathroom problems most mornings.If I need to leave the house I use Loperamide,for which I have a repeat prescription. I try not to over do it though, as the D., can easily go the other way,and for me ,not being able to go is worse than going too often.Others will advise diet,but it's all trial and error.


----------



## DougUte

Hello erwinrosen. Welcome. 

Like scottsma I am also careful about diet. I have Crohn's and Diabetes. Luckily limiting carbs can help with both diseases. I also do not eat many vegtables, because the fiber can cause problems. I take Loperamide 4 capsules a day (my prescription calls for 6 capsules a day but I found I don't need that much). Everyone is so different when it come to controlling the "D".


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## ronroush7

I avoid gluten and dairy and for the most part vegetables and nuts.


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## doglover1

I am new to posting and how it works. This is a good group for me because I was diagnosed with Crohn's after 50 and have tried all the oral drugs, Remicade and am currently on Entyvio. The positive thing is Entyvio has decreased the flares. The bad thing is that now I have constipation which I treated last night with 3 enemas and 3 over the counter stool softeners.  It has given me some relief but the morning dry heaves are my best friend, and the pain and nausea are close seconds. I read that insomnia is also a possible side effect and that has entered my world as well. 

I went to see my GI team last week, the ran blood work to see why I am fatigued and keep telling me my Crohns is not acting typically. I am getting very frustrated with them, either fix this or send me to someone who can.


----------



## ronroush7

doglover1 said:


> I am new to posting and how it works. This is a good group for me because I was diagnosed with Crohn's after 50 and have tried all the oral drugs, Remicade and am currently on Entyvio. The positive thing is Entyvio has decreased the flares. The bad thing is that now I have constipation which I treated last night with 3 enemas and 3 over the counter stool softeners.  It has given me some relief but the morning dry heaves are my best friend, and the pain and nausea are close seconds. I read that insomnia is also a possible side effect and that has entered my world as well.
> 
> I went to see my GI team last week, the ran blood work to see why I am fatigued and keep telling me my Crohns is not acting typically. I am getting very frustrated with them, either fix this or send me to someone who can.


I agree.  If you don't find relief soon, go for a second opinion.  Best to you


----------



## scottsma

Hello doglover1 and welcome.There are three things we have in common,dx'd over 50,crohns and doglover. I hope you get something to suit you soon.I hate being constipated,although thankfully it's only occasional.If I had to choose,hahaha,it would be the opposite every time.Best wishes.


----------



## ronroush7

scottsma said:


> Hello doglover1 and welcome.There are three things we have in common,dx'd over 50,crohns and doglover. I hope you get something to suit you soon.I hate being constipated,although thankfully it's only occasional.If I had to choose,hahaha,it would be the opposite every time.Best wishes.


Just trivia.  I am a dog lover.


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## scottsma

I know you are Ron,and dog lovers are usually good people.If a dog doesn't like someone,then I would give them a wide berth.


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## DougUte

doglover1 said:


> I am new to posting and how it works. This is a good group for me because I was diagnosed with Crohn's after 50 and have tried all the oral drugs, Remicade and am currently on Entyvio. The positive thing is Entyvio has decreased the flares. The bad thing is that now I have constipation which I treated last night with 3 enemas and 3 over the counter stool softeners.  It has given me some relief but the morning dry heaves are my best friend, and the pain and nausea are close seconds. I read that insomnia is also a possible side effect and that has entered my world as well.
> 
> I went to see my GI team last week, the ran blood work to see why I am fatigued and keep telling me my Crohns is not acting typically. I am getting very frustrated with them, either fix this or send me to someone who can.


It does sound like Entyvio is working. I wonder if Humira would have less side effects? 

I am also a dog lover. :dusty:


----------



## JackG

I didn't join this group because I was diagnosed at 32, but now at 66 and some of the stories I'm reading are familiar and informative.

Currently I stay away from dairy and coffee. I can drink an occasional Pepsi but it loosens me up. Was surprised to see the discussion about staying away from breads and pastas. Also someone said they avoid tap water? 

Guess I've been very lucky over the years. I ate just about anything for decades, with raw fruit being a problem early. Took Metamucil for a while and it really stabilized me, but now it seems to give me cramping gas. Sugar free candy does that too.

In other posts here, I've described my difficulty in trying to retire, specifically because of the cost of Humira. Is anyone else retired and on a biologic?

About retiring, my GI has even suggested changing from Humira, which Medicare only partially covers, to Remicade, which as an infusion is entirely covered. We have always resisted this step while Humira is still working. Does anyone have an opinion on this?


----------



## ronroush7

JackG said:


> I didn't join this group because I was diagnosed at 32, but now at 66 and some of the stories I'm reading are familiar and informative.
> 
> Currently I stay away from dairy and coffee. I can drink an occasional Pepsi but it loosens me up. Was surprised to see the discussion about staying away from breads and pastas. Also someone said they avoid tap water?
> 
> Guess I've been very lucky over the years. I ate just about anything for decades, with raw fruit being a problem early. Took Metamucil for a while and it really stabilized me, but now it seems to give me cramping gas. Sugar free candy does that too.
> 
> In other posts here, I've described my difficulty in trying to retire, specifically because of the cost of Humira. Is anyone else retired and on a biologic?
> 
> About retiring, my GI has even suggested changing from Humira, which Medicare only partially covers, to Remicade, which as an infusion is entirely covered. We have always resisted this step while Humira is still working. Does anyone have an opinion on this?


I had to retire five years ago because after à resection there was too much stress on my body going to hours on a bus to work and then two hours back home.  I don't have Medicare at this point and not looking forward to it.  I have BC/BS and only pay five dollars for Humira.


----------



## scottsma

Hello Jack.can't offer the advice you want,being in the UK, but I just wanted to welcome you aboard. 
You probably already know that scripts for over 60s are free in the UK,also free for those on unemployment benefits and for kids under 16. We are soooo lucky,but the way things are going with the government,it might not last for very much longer.It's a sad state of affairs when you're unable to retire so that you can continue to pay for your meds.:frown:


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## dave13

The fear of not being able to retire is shared by too many with IBD. My bigger fear is not being able to retire_andnot being able to continue to work even though I must._


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## DougUte

I will have my 30th anniversary at work this December. This will make me eligible for full retirement. However, because of medical coverage I will have to work for at least 5 more years. It makes me very stressed. And what happens if I get really sick?


----------



## scottsma

That is so unfair Doug.....it's going to be a loooooong five years.


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## fuzzy butterfly

What a bummer Doug...
Iv 13yrs to be able to possibly retire..if that makes you feel any better il be working till im 67


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## ronroush7

I wish I could still work.  I am sixty.


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## EmbraceJoy

I turned 50 in April. I was at work, leading an educational tour of 15+ teenagers in France and Italy. I literally spent my birthday doubled over in pain in a bar in Italy, sipping on ginger ale so I had access to their restrooms. I thought I had "eaten something bad" on the tour and that "things" would get better in a day or two. The last 5 days of the tour were a blur. The flight home - a traumatic nightmare. STILL thought I'd get home, get in my own bed, and this food poisoning thing would go away.

Until there was blood when I got home. I was hospitalized for a week at that time, and diagnosed less than 2 weeks after my 50th B-day by colonoscopy and biopsy. I was hospitalized again a week later. 

A lot of digestion related history makes sense now. I actually think my first flare was 22 year ago when I was pregnant with my oldest. I think my complaints were discounted, ignored, and invalidated because I was a woman and pregnant for the first time. :ymad:

I haven't yet had a chance to get comfortable with my new normal. Which reminds me of a new thread I want to post, so thanks for this support group!


----------



## lulu88

So great to find these forums.  I can tell by reading down the history of some time ago,on the thread that this is wonderful information to read and not to feel so alone.   I've been needing this since my diagnosis 2014, i was diagnosed december 2014, through a stricture and had to have the operation which was worse than i expected.  I'm on remicade and methotrexate.  while tolerable, i am so let down by my medical team, my GI who has a million pts. and the other dr. that takes care of me.  I still feel like she just isn't open-minded enough to really help me.  I'm taking remiccade and methotrexate. i was just told that they are working for now, meaning i won't get worse, hopefully. I was just told that I will need to  be on medications for the rest of my life and i had no ideal.   how can my only hope be to " not get worse"   I am grateful for it, don't get me wrong,.  I want to be well and healthy.    they never talk about nutrition, the effects of  food., when i tell her i'm taking a really good hardcore probiotic . she treats it as  " not really relevant. even tho they say its working, but I don't feel well, I have the hardest time just getting through the day,so much pain, and stiffness, body and neck and, brain fog, (at times terrible) then the intestional pain,the depression/anxiety/insomnnia, and i'm exhausted every day with horrible fatigue  and  sometimes can barely move.  fatigue is the worse its every been.  thank for just letting connect and i'm interested in any information


----------



## ronroush7

lulu88 said:


> So great to find these forums.  I can tell by reading down the history of some time ago,on the thread that this is wonderful information to read and not to feel so alone.   I've been needing this since my diagnosis 2014, i was diagnosed december 2014, through a stricture and had to have the operation which was worse than i expected.  I'm on remicade and methotrexate.  while tolerable, i am so let down by my medical team, my GI who has a million pts. and the other dr. that takes care of me.  I still feel like she just isn't open-minded enough to really help me.  I'm taking remiccade and methotrexate. i was just told that they are working for now, meaning i won't get worse, hopefully. I was just told that I will need to  be on medications for the rest of my life and i had no ideal.   how can my only hope be to " not get worse"   I am grateful for it, don't get me wrong,.  I want to be well and healthy.    they never talk about nutrition, the effects of  food., when i tell her i'm taking a really good hardcore probiotic . she treats it as  " not really relevant. even tho they say its working, but I don't feel well, I have the hardest time just getting through the day,so much pain, and stiffness, body and neck and, brain fog, (at times terrible) then the intestional pain,the depression/anxiety/insomnnia, and i'm exhausted every day with horrible fatigue  and  sometimes can barely move.  fatigue is the worse its every been.  thank for just letting connect and i'm interested in any information


I hope that you can get to feeling better soon


----------



## scottsma

Welcome Lulu.I'm so sorry you're not getting the support you need from your medical team.I hope you get support from your family and friends,and you don't have to cope on your own.
I know very little about meds.especially USA meds. but I do know that we're started on the lowest / weakest types at first so that if they don't work something stronger can be prescribed.
You're obviously not feeling at all well, so don't take your docs word on how you should be feeling.If you're not happy,then change doctors, if you can.I hope you feel better soon.Welcome once more.


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## DougUte

Hi Lulu! I hope you start feeling better. Some doctors have no idea what us IBDer's go through. My thoughts and prayers are for you.


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## fuzzy butterfly

Hi Lulu.. :welcome:
Its a very rocky road somtimes to get the help and relief we so need.. it can be done as a few of us here have done it and got remisson periods. 
Hang in there and dont be afraid to push for what you want and need re treatment..stand firm and they usualy give in to you.
Very best wishes and i hope you soon feel better


----------



## ronroush7

fuzzy butterfly said:


> Hi Lulu.. :welcome:
> Its a very rocky road somtimes to get the help and relief we so need.. it can be done as a few of us here have done it and got remisson periods.
> Hang in there and dont be afraid to push for what you want and need re treatment..stand firm and they usualy give in to you.
> Very best wishes and i hope you soon feel better


I agree


----------



## EastCoast902

fuzzy butterfly said:


> Hi Lulu.. :welcome:
> Its a very rocky road somtimes to get the help and relief we so need.. it can be done as a few of us here have done it and got remisson periods.
> *Hang in there and dont be afraid to push for what you want and need re treatment..stand firm and they usualy give in to you.*
> Very best wishes and i hope you soon feel better


I am quickly learning how true this bolded statement is....Diagnosed in Nov 15, humira high loading trial did not work. Been admitted in hospital via Emergency twice this month- just got home a few hours ago from my latest- which was an obstruction. Saw my specialist almost 2 weeks ago. New drug regime of 9mgs entocort daily, 7.5 Methotrexate weekly (?) and Entyvio infusions.  So far the only script I have is for the Entocort....The infusions can't be set up until the clinic gets the scripts....Yep I got on the phone and started breaking thru what seems like brick walls.  Just got a call from the drug store the methotrexate has been ordered and filled....I told the GI clinic they have until tomorrow to get the Entyvio script to the infusion clinic. I'll leave them alone until then...I am taking control.....


----------



## RNGirl

Hello, anyone start a biologic for the first time after the age of 60?  I am seeing data the side effects are worse after 60.  I will be 62 in a few months, but have no choice in the matter.  Have ulcers in my terminal ileum.  Diagnosed a couple of years ago.  I guess we're anomalies, getting Crohns late in life.  I  would appreciate any advice or encouragement.  Not doing real well emotionally lately either.  Thanks for your support!


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## JackG

RNGirl, I was diagnosed at 31 and was on other meds for years. I started Humira at about your age and its going to be 3 years in November. It works well, but has given me some psoriasis. Get yourself stabilized and you can live a normal life. And you have these wonderful people on this board to help. Use us.


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## dave13

RNGirl said:


> Hello, anyone start a biologic for the first time after the age of 60?  I am seeing data the side effects are worse after 60.  I will be 62 in a few months, but have no choice in the matter.  Have ulcers in my terminal ileum.  Diagnosed a couple of years ago.  I guess we're anomalies, getting Crohns late in life.  I  would appreciate any advice or encouragement.  Not doing real well emotionally lately either.  Thanks for your support!


I started Remicade at age 50. I just turned 53 and so far so good. You are not alone with your worries about biologics.


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## RNGirl

Thank you Jack and Dave.  Appreciate your kind words!  Hope all is going well in your lives too.  Not hard to dwell on this stuff and get depressed.  Take care


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## tdadpete

I was initially diagnosed with Crohn's in December 2015, but it wasn't confirmed until June 2016. My biggest aggravation is with the diet restrictions. I am on a low fiber, high calorie, high protein diet. I actually get a little depressed when it is time to eat again and my options are so limited. I have had some moments of depression related to diet alone. Has anyone else experienced this?


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## EastCoast902

Yes, very much so and posts are so limited because we are all different. I am a foodie, love to cook, have family sunday dinner every week etc...It has been tough. I, too, was diagnosed last fall. Due to 4 blockages since Aug, I am on low residue soft diet. I overdose on avocado, proteins, broths & cream (made with water) soups, crackers, eggs, lots of fish, surprising I eat a lot of cooked spinach and liver. V8 & fruit juices.  I am discovering ways to enhance my safe foods and add them to the family diet- not always successful, but they can go to McDonalds if they don't like what I am preparing. My blood pressure has always been good, so I use a lot of salt for flavour. I've lost over 50lbs in less than a year, so I am not on fat restrictions. I overload with mayo. It is depressing, but I am trying to look at it as a challenge. 

Currently with my history of blockages, keeping things flowing (6-10 times a day) is vital for me, until we can see if the Entyvio is going to work. I also started 40mg's of prednisone, on Cipro & Flagyl for a few more weeks.


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## RNGirl

I for sure have struggled emotionally with food too.  I've also suffered my own bouts of depression with not being able to eat the foods the rest of the family enjoy.  We are Italian and I have been cooking since I was 6 years old.  I have signature dishes I can no longer eat, so have stopped preparing them.  I am trying to eat to live now instead of live to eat.  Didn't realize I had such an emotional relationship with food.  Not glad to hear others are going through this, but glad to know there are others and we can support each other.  People without these issues can't relate.  Take care everyone and hope you heal soon!!


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## scottsma

As if this darned disease doesn't ruin our lives enough !!! Enjoying food is a " basic human right" hahaha.But if it means making life easier in the bathroom then it's got to be worth it eh ?


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## JLL from SC

Glad (or actually sorry!) to learn that I have so much company as an over 50 diagnosed victim of Crohn's.  I may be the oldest of this group at age 75 having been diagnosed only two years ago.  Well, at least that's when a physician presented me with a diagnosis.  But in 1972 at the age of 31, I suffered a heavy rectal bleed eventually requiring a four unit blood infusion.  Given the state of medical art at that time, only a flex-sig was available (before colonoscopys) for bowel exams so anything around the curve of the colon was a subject for speculation.  When the bleeding stopped and no other symptoms presented, I was released from the hospital.  Later, when I was 45 years old, my annual company physical exam required a colonscopy (the equipment by then had been developed) and for years no abnormalities other than one small polyp in the colon was discovered.  
All was well until about two years ago when I began to experience irregular BM's, bloating and mucus discharge.  Other symptoms included gut discomfort and rumbling, loss of energy and weight, and sleeplessness with pain in the legs and ankle joints.  A colonscopy revealed inflammation of the Terminal Illium leading to a Crohn's diagnosis.  
Since then I have been treated with a probiotic (VSL#3), an anti-inflammatory (Apriso), an immunosupressent, Budesonide, and eventually for the past three months with Humira.  My GI believes that diet changes will  likely have perhaps temporary but little material effect on my condition.  
Some slight relief was provided by the earlier drugs, but it was only after being on Humira for three months that I began to see real progress and for about the last week I have been almost completely symptom free. 
So, the moral of my story seems to be that there is hope for more of life after Crohn's, even after enjoying most of your life free from and even ignorant of this disease.  Thanks to all subscribers for sharing their experiences with the disease and prayers and wishes for early and permanent relief of your symptoms.


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## RNGirl

Hello JLL and all,

It was so enlightening to read your post.  I have been healthy as a horse until the last few years.  Had a random screening colonoscopy a few years ago which showed mild linflammation in the terminal ileum.  Inflammation has now transitioned into chronic inflammation with evidence of ulcers.  I am interested in your experience with Humira as my GI is recommending a biologic.  I have read that these meds are less tolerated as we age, I will be 62 soon.  Can you give me some insight on how your course has been with the Humira?  I know everyone is different, but encouraged you are doing well starting it as an older person.  Possibly Devine intervention you posted, because I have been pretty distraught anticipating starting this med.  Thanks so much to everyone for their support on this forum!!  Take care!


----------



## JLL from SC

RN Girl, I can certainly understand your reluctance to undertake a course of treatment with a Biologic.  Just reading the boxed warning that the FDA requires posted on every ad for Humira, and the fact that they enclose the long list of serious or even fatal side effects with everything coming from the company can scare the dickens out of you.  When my GI suggested that I take Humira my response was similar to yours.  I searched the internet to learn all that I could about the incidents of side effects from Humira users and found more negative news than I could have anticipated...a large number of reports of serious medical problems and even a few deaths.  I assure you that I  gave it a lot of careful thought before proceeding.  One of the things that I learned is that Humira is the most prescribed drug in the world, treating in addition to Crohn's, Rhumatoid Arthritis and Plaque Psoriasis as well as a number of other diseases, and as such serves millions and millions of patients.  So the number of incidents of side effects versus success stories identified on the internet are almost to be expected since it's likely that fewer users take the time to document success than to complain about failure.
The fact that finally convinced me to proceed was my GI's advice that many of the negative side effect stories were from patients with other existing and/or more serious health issues, not to fault such patients for making the decision to take the risk since many very ill sufferers of Crohn's and RA and other auto-immune diseases are desperate for some relief.  Fortunately I am in relatively good health so I decided to go ahead.  That was my own personal decision process for what it is worth...yours likewise has to satisfy you personally.
As to my experience applying Humira, I self inject every two weeks.  The auto-inject Pen is simple and easy to use, the needle only going to a depth of about one half inch and causing very little pain or bleeding.  Thus far I have experienced none of the listed side effects.  As reported in an earlier post, for nearly three months taking Humira I experienced little effect on my Crohn's symptoms, only a slight gradual reduction, but for about the past week I am nearly symptomless.
Sorry for being so wordy in my response and hope that this provides you some benefit.


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## RNGirl

Thank you so much JLL.  Very helpful.  Thank you for taking the time to write such a nice response.  So glad you are doing so well.  Be well and take care.  I see my GI on Dec. 8th.  I'm praying for strength to make the right decision.  Appreciate your help!


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## CeeCeeGo

Hello RNgirl
I totally get your reluctance about Humira.  Until I was diagnosed with this disease 4 years ago I hardly ever used any meds - now I'm a pro!
I have been on Humira for two years now and I can honestly say it is very easy to administer (especially with the new non-stinging formulation pen).  If it works for you, then it is worth a shot.  It can take a few months initially to see if it has an effect and you may still occasionally flare whilst on it; but for me out of all of the meds I have tried for Crohns so far, it is the only one that has had any sort of positive effect.
I am sure you will make the right decision for you.
Take care


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## RNGirl

Thank you CeeCeeGo.  Encouraging.  Has anyone on the 50 & Over support group started Stelara?  Not sure what the GI will prescribe, but he is really old school and is retiring at the end of the year.  Not sure he will even discuss an alternative to Humira.  Unfortunately, I will be getting one of his partners as soon as I start the med, whatever it is.  I know I just need to pray more and trust God will guide and support me through this.  I really appreciate everyone's support too.  One of my issues is I don't have the usual symptoms you would expect with Crohns.  No pain, no bloody stools, 1 to 2 bowel movements a day.  Eat pretty well too.  I know I have ulcers in my terminal ileum and need treatment.  Just afraid I am going to take a nose dive like what usually happens when I put a foreign substance in my body.  I do have extra intestinal symptoms of joint aches, fatigue etc. and hoping the biologic will help with all of my other symptoms.  Not complaining about the lack of pain, diarrhea.  I am blessed in that regard and my heart goes out to everyone who is suffering with this horrible disease.  Just struggling now and needed to vent.  Thank you again and take care everyone


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## ronroush7

I was on Stelara for a couple of years, RNGirl.


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## RNGirl

Thanks Ron.  I think I read in an earlier post that Stelara wasn't very helpful for you.  Appreciate your getting back to me.  Hope you are doing well.  Take care!


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## ronroush7

Thanks


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## rorho19

So do we really think that as "late- onsetter's" we tend to have a less aggressive desease than the younger folks? And if we end up having a resection for fibrotic strictures despite several years of no inflammation that we have better chance of longer remission and lower maintence drugs post surgery?


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## scottsma

Hello and welcome.I don't know about "late on-setters" having a less aggressive disease,but I suppose mine could be classed as such (so far).
What I do know is that I will be forever grateful that Crohns appeared as late as it did,when my days of education,work and child rearing were behind me.To many people with Crohns have to cope with all of those factors,while I have the luxury of only having to worry about myself.


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## TonyWilliams

I turn 55 years old this month, and I've been diagnosed during a routine colonoscopy.

The odd part is that I have none of the symptoms. I have always been healthy, and have no known allergies. I don't smoke, nor have I ever smoked.

If I don't experience the symptoms that require drugs to combat, then I just wait for a symptom? I've certainly had diarrhea in my lifetime, but it was always associated with some food or drink issue in third world countries.

I'll meet with the doctor on the 18th of the month, and I'm a little uncomfortable to have them give me all the worst case scenarios and drugs that they'll want me to take. I'm more apt to not do any drugs if I feel fine, and reassess when symptoms develop.


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## rorho19

the danger with not taking maintenece meds is you end up needing surgery for fibrotic strictures...just the situation i am in now.

R


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## DougUte

TonyWilliams said:


> I turn 55 years old this month, and I've been diagnosed during a routine colonoscopy.
> 
> The odd part is that I have none of the symptoms. I have always been healthy, and have no known allergies. I don't smoke, nor have I ever smoked.
> 
> If I don't experience the symptoms that require drugs to combat, then I just wait for a symptom? I've certainly had diarrhea in my lifetime, but it was always associated with some food or drink issue in third world countries.
> 
> I'll meet with the doctor on the 18th of the month, and I'm a little uncomfortable to have them give me all the worst case scenarios and drugs that they'll want me to take. I'm more apt to not do any drugs if I feel fine, and reassess when symptoms develop.



It is possible for someone with Crohn's to have inflammation of the intestines and have no symptoms. It is not very often this happens, but it can happen. If that is what the biopsies from your colonoscopy found, I would not recommend staying off meds that control the inflammation. Not treating it can lead to major damage needing surgery.


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## rrhood1

I agree with Dougute, I didn't have symptoms that I could identify as Crohns before I was diagnosed. I had occasional diarrhea and some joint pain but chalked that up to getting older and bad food.  However in the 7 years since diagnoses I definitely know when I'm in a flare now and don't just think I have the flu. The problem with no symptoms is that the inflammation in your gut doesn't go away and gets worse.  Or develops colon cancer. Or you have an obstruction. With medication I have been able to not have surgery like many Crohns patients have to have.


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## TonyWilliams

Thanks for the comments. Yes, I saw that there could be real issues down the road, but couldn't that be monitored? If they do a colonoscopy every 6-12 months, wouldn't they see an impending problem?

What drug might have the least adverse impact? I have never taken drugs for anything, except Tylenol.

Also, I'm a pilot, so there are very real implications to drugs and the like.


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## rrhood1

They can monitor but I don't know if your GI would be comfortable doing a colonoscopy every 6 - 12 months.  There's always a risk with sedation and with the camera.  You would have to ask your GI about this.

The drugs may take 3 - 6 months to start working so if you do have a problem, the drug wouldn't respond quickly to this. Crohns drugs tend to be long term - Remicade took 6 months for me to start feeling better.  All of the drugs have side effects, some of them are worse than others.  However I don't want colon cancer - my father died of it so my risk is high. I'm dealing with a Remicade side effect right now - psoriasis.  We've decided that we will keep going with the Remicade and treat the psoriasis with a specific drug instead of trying a drug that treats both.  Which drug is better is something for your doctor and you to decide.  

As a pilot, you would not want a drug that gives you side effects like sleepiness, brain fog, fatigue.  However, those side effects are also an effect of Crohns - the fatigue is not just simple tiredness. It is an overwhelming feeling that you can't even lift your legs to walk, can't keep your eyes open, can't stay awake no matter what you do.  So this may occur even if you don't take any drugs.  Then there's the diarrhea.  We're not talking about a few sessions in the bathroom. We're talking about the constant urge to have a bowel movement - you want to stay in the bathroom for hours.  30 - 50 times a day. Dehydration caused by the diarrhea.  Becoming low on minerals and nutrients to the point where your doctor is afraid your heart will stop.

Sorry - I'm being very graphic but this is often the life of a Crohns patient. I don't want to scare you - with medication, your life can be fairly normal. There may still be days when the disease takes over but you can power through it and keep going.  You need to talk to your GI about options especially with your job as a pilot. Also, get travel insurance. You never know when it can hit you.


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## Bufford

TonyWilliams said:


> Also, I'm a pilot, so there are very real implications to drugs and the like.


Be very careful how the diagnosis is handled.  My understanding is that in some jurisdictions a Crohn's diagnosis means having one's license suspended or restricted.


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## TonyWilliams

Yes, when I officially have a diagnosis and / or using drugs, I need to report this to the FAA. They will ground me.

There is a process to reinstate the medical certificate that is required to fly, but that will take some time and have restrictions.


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## curlywurly

H All
 I was diagnosed with crohn's in 2013 after 6 weeks of constant runs and right side pain, I lost a stone and a half in weight. I have been on numerous meds Meslazine, Azathioprine,6-Mercaptopurine,Methotrexate.
I had a reaction to all I was 54 at that time.
 I too had a lot of stress at the time loss of job, loss of friend due to bowel cancer.
I have had two colonoscopies sigmoidoscopy and a few mri on small bowel that was clear.

I am now 58 and I recently had a gastroscopy which found an Hiatus Hernia and a short section of Barrett's,i am at the moment on antibiotics for SIBO.
It seems to be a gift that keeps on giving.
I have just lost my benefits as they say I am fit for work.


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## scottsma

Hello and welcome.That's just terrible losing your benefits.I have the utmost respect for anyone who can hold down a job and / or raise a family with this damn disease.I usually have a reasonably easy time of it compared to most,but I couldn't work unless it was flexi hours on my terms.Luckily we're retired so it's not an issue.I don't know what to advise,but I hope things get better for you.


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## rrhood1

I’m sorry to hear that you lost your benefits. Is there a way to appeal this decision?

Aging can be a trial - we seem to just get used to one thing and another pops it’s ugly head up.  We all have multiple diagnoses and diseases.

You probably need to go onto the biologics in order to get some remission. They’re expensive, I know, but you need to talk to your doctor about further medications.  

With so many different things happening to you, you may want to consider getting one more doctor - someone that can look at you as a whole person and include all your specialists in your treatment. Mine suggested an internist - they would receive all your test results and be able to direct the next step.  My GP took on that role as she’s very learned in multiple fields. She looks at me as rrhood1 and knows every problem that I’ve dealt with and the treatment. She’s actually taken courses in order to better understand what is happening to me.  I’m very lucky to have found her.

Please let us know how you’re doing. This forum is one of the best going for information and support.


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## curlywurly

Thanks to everyone who gave advice about my problems, I have requested a Mandatary Reconsideration I sent a GP & Consultant report about what is going on at the moment but no joy I have still been turned down  I don't understand as I have more going on than
I did two years ago when they put me in the support group.
 I am seriously thinking of going for early retirement as I have a private pension I will lose
money but I just want less stress.


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## HalkiGirl

Hello, group!


After a few years of "tummy troubles" I was dx'ed with CD in December...not the best Christmas present but certainly memorable. Working to get the inflammation under control and lesion healed. Last few years I've been working out regularly and revamping my diet (most of the time I'm "compliant" lol), which I suspect kept me from getting sick sooner but a bit of extraordinary stress over the last 7 months apparently pushed me over that cliff. 

So now that I know stress is one of my triggers, I'm working with a nutritionist to work through dietary triggers. Am wondering if anyone has experience with nutritionists, because some of what I'm hearing makes sense (possible food triggers) and some absolutely doesn't (we'll get you off of the meds at some point....uh, no, I'm just starting to not having to hit the bathroom 15 times a day and don't want to go back to that). Would appreciate any insights you folks might have.


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## scottsma

Hello and welcome to the forum.I'm glad you're getting the ball rolling and I hope you begin to feel better soon.I can't advise on diet,as we're all different as to what triggers an upset.Your dietition will probably tell you to keep a food diary but it's a long slow process of ilimination.You'll do well to stay on the meds if they're helping,but if you have adverse affects discuss it with your GI as there are lots of alternatives to try until something suits your needs.There will be others along soon to offer support and advice.


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## curlywurly

Hi Halkigirl
Welcome to the forum I personally have not seen a nutritionist but you will find that this disease effects everyone different which is why it is difficult to treat. I have had reactions to different meds over the last five years. I have found that lager is a trigger for me so I haven't had any in five years. 
I now suffer more with constipation and this brings its own problems, I take fibre in liquid form but it does not really help and I don't want to take it long term.  I would take your GI advice before anyone else at this early stage to get you hopefully in remission.


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## HalkiGirl

I follow up with my GI this week and suspect there could be a change in medication since some symptoms have been helped and others have not. Was somewhat following the Paleo diet pre-diagnosis and am doing more strictly as doctor directed...and have been put on notice by my gut almost immediately when I've guessed wrong on what is safe, although sometimes difficult to determine the culprit in a few cases. Looking through past posts here it's clear I must be patient--didn't get sick overnight and won't feel better overnight either.

Glad I found the forum, good to not feel so adrift and alone with this new "normal".


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## scottsma

Diet is different for most.Usually best to steer clear of spicy,greasy,nuts.seeds,popcorn,although if you're doing paleo some of these won't apply.If in a flare a liquid diet for a few days,to rest your gut,might help.Also bland food,chicken (no skin)white rice,toast(white) bananas might help too.I know others will have lists of do's and don'ts that are best for them.You'll soon learn what's best for you.There are many on the forum who lead a perfectly normal life,career,family,vacations etc.so try not to be down-hearted,you're on the right track.


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## curlywurly

Hi Halkigirl
 I am glad you will be seeing your GI this week as Scottsma  has mentioned you will find your own triggers to what sets you off.
 Unfortunately it is not a one size fits all disease we are all unique, hope you can find a medication that works for you.
Keep your chin up we are all with you.


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## thike1966

I was diagnosed at age 51 at the end of last September. 

I felt a twinge in my gut for a few months before which I thought was due to anxiety and stress of taking care and grieving for my mother who succumbed to Alzheimer's disease after two years of decline. I have no complaints, taking care of my mother was the most beautiful thing I ever did and she left us, living at home up until the end. She never lost her kind heart and giving spirit, knowing as a lady when it was time to leave. I had no idea it was the developing if Crohn's.

I had developed hemorrhoids and diarrhea, so I added fiber tablets and begin to eat salad every day until the the diarrhea got out of control and everything I ate came out as it was. My hemorrhoids started to constantly bleed and I lost a lot of blood so I went to the ER, after I got out of work.

They felt my stomach was hardened and gave me a CAT scan. They diagnosed me in less than 4 hours.  The doctor assured me that Crohn's is a very manageable. My sister has had it since 1978. 

They wanted to admit me because I was so weakened, but they hospital had been over whelmed by many victims of a a bus and car accident and only critical patients were being admitted, so they sent me home after connecting me with a GI doctor for a follow-up.

I went to the GI doc two days later and was sent back to the hospital to be admitted with sever dehydration. My intestines were so swollen from the Crohn's attack and all the fiber I took that they had completely shut down. The doctor told me it was like using sandpaper in a cut on my arm until the entire arm got infected.

I never thought too much fiber could cause so much damage.   When I got admitted, they gave me another CAT scan and said I gone septic. The ER doc said I was four days away from complete organ shut down that I would never go home from, indicating I was 4 days away death from lack of water and food for 5 days. I know from being a wilderness survival trained that you can live for weeks without food but only days without water.

I did not process how close I was to my demise until a few months later. It makes sense why it is taking me so long to recover. I am in relapse again after rejecting Remicade and waiting to see my GI doc this Monday. I have gotten on the track for remission and just get keep getting knocked off from acquired allergic reactions to antibiotics, amoxycillin, then Flagyl which was the worst since once you start the later, since once you start it you have to finish the prescription or risk not being able to respond to that class of drug in the future.

I still have hope that I will someday be in remission, it will come some day.


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## rrhood1

Welcome Thike1966.  Yes, fibre can be terrible for some of us. I have to keep away from kale, quinoa, flax, most nuts and seeds.  For some reason I can tolerate oatmeal and salads with lettuce doesn’t hurt me - just goes through undigested. It helps to do a food diary so you know what to avoid. Also if the symptom of a flare start, I go to a clear liquid diet for a few days then go on the BRAT diet (bananas, rice, applesauce, toast).  Don’t be afraid of asking advice - we’ve all been through a lot and can often give some suggestions. Please do check things out with your GI doc though - they are often the best source of information and what to do for your health.


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## JackG

Thike1966, I had a tortuous journey to my diagnosis as well, losing 50 pounds or more over six months, and I wasn't a large person to start with. Finally after several visits to University of Chicago they found the problem on an X-ray table. The surgeon came in and said I had an abscess that had burst and I wouldn't survive the night. They gave me a transfusion and I felt like a new man. Then they took me to surgery for an ileostomy, which was reversed 6 months later.

The good news is I've stayed faithful to my meds, and my GI doc, for 35 years. I've had a normal life with work, children and lots of golf. And the meds are better and the docs more knowledgable now than ever. 

And of course, this board is a terrific resource.


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## thike1966

JackG,
Thank you for the hope and I can't wait to be well enough to play golf again with my father. When I get into remission, I will throw

I agree medicines and docs are getting better all the time. The doc who leads my support group told us a tectonic shift is on the way like we have not seen in 20  years since the intro of TNF blockers. He mentioned that a the drug, Xeljanz, which blocks the production of TNF, so it doesn't just block them. It's now used for Rheumatoid Arthritis and is in stage 4 out of 5 of the FDA approval process, and offers a great new combo treatment with TNF blockers.

With the ever deepening gene understanding and the understanding of microscopic symptoms, we are going to get the best care ever.  

And also thank you to rrhood for the welcome.


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## scottsma

Hello and welcome.I agree with all of the above replies to your post.There is always someone around who will give you advice and support.At first diagnosis everything is stressful as there's so much to take in.Just go at your own pace and do what's best for you.We're all different,so what works for some won't work for others.Diet in particular.
I'm so sorry for your Mother's demise,and maybe the underlying stress brought your crohns to a head.Stress is not good.I'm glad you found us and I hope you feel better soon.


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## curlywurly

Hi thike1966
 Welcome to the forum, like you the year I was diagnosed 2013 I had l lot of stress losing a friend to cancer and being made redundant.
 I do believe it had a bearing on me being ill, I have had numerous different tests over the years because of my reactions to different meds.
The last test was for Small Bowel Bacterial overgrowth I had to take antibiotics I don't think they have made much difference as I still get bloated and constipated.
I hope you find a suitable medication to get your life back on track.


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## thike1966

Curlywurly,
I am reading a book about Microbiome written by a GI doc who promotes using probiotics to over come the loss of good bacteria that are lost with antibiotics. It takes time to rebuild, sometimes months. But it ilooks promising. My nutritionist has me on Florator and Renew Life Ultimate Flora 50 Billion. 

I ran out of the Renew Life last week and cheated with Easter Candy, my craving for sweets came right back. I am waiting for more to come that just ordered. The Florastor is half price on Amazon, which is great since they retail for nearly $1 a piece and taking 6 a day adds up, 4 of the first, 2 of the renew. 

The idea is get the bad bad bacteria and yeast that live in our intestines and cause the the cravings to be starved out and over taken by the good bacteria I am reintroducing after taking so many antibiotics recently and in possibly all the damage I suffered from a childhood of getting over-antibiotics because I was born way premature and had a lot of health problems. In the 70's there was no idea that you can over prescribe and now that is becoming more and more evident that we need the healthy bacteria.

The book is called the Microbiome Solution by Robynne Chutkan. Like the advice I get from my nutritionist and all that I read on this forum and hear from others, we each need to find our own way.  So just consider a few months on probiotics to get your balance back with the bad guys including yeast.

Regardless, I wish you well and hope that you find a solution.


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## leanne27

I've just been diagnosed with crohns colitis at the age of 52, like others I've had issues on and off for years and finally got things sorted.
I'm still in a bit of denial as I really don't want this at this stage of my life. I am going through a divorce, was made redundant mid last year, and general stress levels have been high. Hence longer and more severe issues leading to a diagnosis, after constantly being fobbed off by my GP saying every issue I had was "stress".
Emotions are up and down, exacerbated by prednisolone.
It's hard dealing with this and living alone too, my cleaning was just not done for the past few months while I've been really sick.
I should be grateful to at least have confirmation of a diagnosis that I have been fairly suspicious of for years. I even changed my fridge over  a few years ago as I was sure I was giving myself gastro because the temperature must not be right!
Anyway I think I'll be right once I adjust and once I get a treatment regimen that I am comfortable with


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## scottsma

Stress isn't good for us crohnies but it's usually unavoidable.I hope things begin to improve for you soon.


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## curlywurly

Hi Thike1966
 Thanks for the info on the books I have also been reading about the Gut and how it works
 it is quite interesting.
 A doctor over here in England has wrote a book called The Clever Guts Diet even though it is not a diet but a new way of eating.
He talks about the gut having its own eco system and what it needs to keep healthy.
I try to eat like it says how to get more probiotics in my diet and more exercise.
I will give you the Authors name you may find the book helpful Dr Michael Mosley.


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## thike1966

rrhood and JackG,

I don't think I thanked you enough for your kind words. jackg I am inspired that you lived through the night and are doing so well.

So Thank You Thank You for the great support and advice.

rrhood, My nutritionist who works hand and hand with my doctor, doesn't like BRAT because it's not nutritional enough when you need the most. I was on it for 4 weeks and I noticed my hair got brittle. She has me put vegetable soup in blender and use that for flares. I'm on the IBD-AID diet based on the SCD diet, but more liberal in some ways, with three phases: 1) Flare, 2) Symptoms Intermittent and 3) remission/Maintenance. 

Below is a link to the food list, if you hit the menu button you will find a lot of Crohns's friendly recipes. I think in my appointment next week she is going to add enzymes to my routine, along with the probiotics I currently take, which seem to help taking over the bad bacteria and yeast in my gut. My skin cleared up, no acne for the first time in 20 years. I used get a just few pimples, especially when under stress. 

I'm reading The Biome Solution, where Robynne Chutkan linked bad gut yeast to acne and apparently she is right. I never knew cravings and sweet tooth's come from the bad guys in the gut. The intestines signal the brain. Many other eye opening ideas in the book as well. She is a GI doctor and stories about her patients journey to remission.

They never taught us in High School and probably didn't know how complicated the intestines are and how our biomes in the large intestine can effect us. As well, I never knew how much of the immune system is tied to our guts. I just ordered some Oregano Oil that is supposed be really good for us as anti-inflammatory and other homeopathic benefits. I do believe there much more we can do other then just rely on medication, especially dealing with the stress and depression triggers. 

I love this forum and my bi-monthly support group, because speaking freely and having people with the same issues, better and worse, is liberating. Every thing I do, I clear with my nutritionist.


I stay optimistic, knowing remission is down the road and my support group is lead by a great doctor who says there a tectonic shift coming way as big or bigger than the shift Remicade started 20 years ago. So the future looks bright for all of us.

https://www.umassmed.edu/nutrition/ibd/foods-list-for-ibd-diet/


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## rrhood1

Welcome Lynda Lynda.  Yes, at our age the doctors tend to start writing things off to old age. I’m lucky with my 3 main doctors - they know how hard I work to get things done and don’t accept any diagnoses of age. Time and time again they’ve dug into a problem and end up finding that it could be caused at any age. Our disease can cause so many symptoms, it’s bewildering at times. This is a great site to bounce ideas around.


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## scottsma

I know IBD has a tendancy to spread from one place to another.I was diagnosed in 2006 with Proctitis and then about four years ago with Crohns colitis. It is possible you've had IBD for years but some doctors will tell you IBS at first.I'm happy to know that you've now had a positive diagnosis.It's the not knowing what's going on that's stressful.


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## Scipio

Lynda Lynda said:


> Could I have had Crohns all these years instead of UC ?


Yes, that is quite possible.  UC and CD are very similar diseases that are sometimes hard to distinguish by even the best GIs.  This is especially true when the disease is confined to the large bowel, since activity in the small bowel is one of the distinguishing features of Crohn's.

Never say never, but pretty much all these cases of "UC that turned into CD" were CD all along that was mistaken for UC in the early going.


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## scottsma

Lynda,I think stress also has a lot to do with how we look too.How can we not be stressed when we never know what tomorrow will bring,healthwise.For me it's the opposite.Every one always says how well I look,which means I sometimes have to pretend to feel OK when I just want to be left alone.A little bit of blusher helps.hahaha


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## Merv S

G'day to one and all!
Perhaps my introduction to the wonderful world of Crohn's was a a little different. 24 years ago at the age of 49 I developed acute appendicitis. Keeping this as undramatic and short as possible after a nine hour wait without analgesia I was carted off to the theatre. 

It transpired that the appendix had rotted away taken a few inches of colon with it. It was no great surprise that peritonitis resulted. Due to the infection and a raging fever I have no recollection of the following 48 hours.

Needless to say I was given copious amounts of IV and later oral antibiotics.Whether this factor had anything to do with the onset of Crohn's is open to question.

Up until this event I was in good shape for a guy knocking on the door of fifty. Things changed dramatically after the surgery. There is no need to go into graphic details , because all you good people know the feeling of watching your life go by sitting on the loo! 

It took several years to be honoured  as a confirmed 'Crohnie'.  Everytime a biopsy was taken during ta colonoscopy the results would come back as 'atypical of CD' , although on examination there was evidence of strictures and moderate to severe inflammation. 

At the time I was a Probation Officer, which necessitated frequent Court appearance. Life became difficult and awkward when in the witness stand. Asking a District or Supreme Court Judge to be excused to avoid an 'accident' is no easy task. Consequently, I was forced to take medical retirement.

Over the years I took anything and everything medication wise. While  corticosteroids did offer some temporary relief (with nasty mood swings) , nothing made any difference to the frequency of B/A's and abdo pain.

Eventually, a surgical resection of the terminal ileum (35cm ) was conducted about ten years ago. This confirmed that I had active Crohn's.

The situation now is that approximately a further metre needs to be removed. Due to a comorbidity of other issues ( Cardiac, Vascular and Respiratory) further surgery is not the safest option. 

So Stelara is being used as the last treatment resort It is early day yet, so making hopeful claims may well jinx me! I 'll leave it for six months and report back.My apologies for the long post however I would be interested to know if any anyone has had a similar experience.

Wishing you all well,
Merv


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## JackG

Hi Merv and welcome. Tragically your story is typical of all of us.

I have a couple posts on this board that tell my story, but briefly: mine started in 1982 when CD wasn’t known as well and it took me six months to get referred to University of Chicago. An abscess near my appendix burst the very day I was there, and I was invited to stay 30 more days.

Staying on meds, seeing my GI, and keeping away from triggers like dairy have given me a mostly normal life and hopefully you will get there too. Flares and fissures have happened, but I got through them with doc’s help, sleep and Ensure. Strictures near the inflamed scar tissue of my surgery developed in 2011, 13 and as recently as three weeks ago. They pump me out and put me on prednisone. This time I went in earlier and avoided the nose tube.

Went on Humira in 2013 and all seemed well until this. Doing a small bowel flow through this coming Friday, but surgery is last resort. No miracles. I suppose if I can function and bear the side effects, we’ll carry on. Prednisone is waking me up at night, like now as I write. 

Keep us posted cause we support each other.


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## Merv S

Thanks Jack!
As long as we have a pulse , can breathe, have toilet tissue and a sense of humour-we shall survive ( for the time being)
Cheers from a coolish OZ,
Merv


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## scottsma

Hello Merv and welcome aboard, but sorry you have to be here of course.

All the things you've listed above are important to us crohnies but I think a sense of humour is the most important.There's plenty of that on the forum as well as support and friendship.Hope you had a good Sunday.


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## Bufford

Welcome to the club Merv, your situation is not unlike mine.  I had problems going all the way back to my last year of high school back in the 1970's, it started out as a boil on my rectum that would bleed a bit while on the toilet.  Later I dealt with some very painful abscesses on my rectum. Back in those days I was given only a local before the surgeon would lance and squeeze them.  They had staff holding me down when they drained the abscesses.
 As a result I avoided going to doctors and would get lucky that the abscesses drained on their own.  But then luck ended and I had the big one in my 40's that left me with a temporary stoma that became permanent. I almost died of sepsis for letting it go too long in the hopes it would break, drain and pass on.  The surgeon said  I too had an appendix that was rotting away along with half my colon and 3 feet or a meter of small bowel.
  I took disability that later rolled into an early retirement and had to leave my career early.
 Its a disease that I feel has stolen a big part of my life.  So I hold dear the life I do have left to live.  Retirement has been far kinder and a much larger part of my life than I ever thought it would become.  There is life with CD.


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## Merv S

Hi Everyone,
Thank you for your replies. Mr Bufford, there is a tenuous commonality  between me and thee, the inasmuch that some twenty odd years (1973?)ago, I had a rectal abscess which was extremely painful, but treated with and resolved by antibiotic therapy. It is odd that you should have had a similar precursory experience.

Perhaps I should have mentioned that long before my involvement in probation work, I started off as a soldier and morphed into psychiatric, 
 and general nursing for the majority of my working life. A 'mister sister,' so to speak.

What I would like to put to all of you is the proposition that Burrill Bernard Crohn perhaps got his diagnostic statement of 'Regional ileitis ' just a tad wrong. Undoubtedly , he identified the extent of the condition, but I am not sure that Crohn considered it to extend from' the mouth to the anus  . Your thoughts would be appreciated.

With the benefit of hindsight we all  acknowledge that despite the hesitancy of medicos to leap to the conclusion that the final diagnosis is CD , rather than the ill-defined IBD. then I think the question must be asked - are there multiple causes of CD?

What perturbs me is like the majority of you , we have be subjected to a battery of medications that were targeted to treat, cancer, rheumatoid arthritis and psoriasis. Not a single drug specifically designed to combat CD.

So , although we all are aware that this is an autoimmune problem, then what theories can any anyone of your imagine might be a  aetiological  factor? , Genetic, familial , environmental, tough luck? The floor is yours-got to skip to the loo!
Bless you all,
Merv


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## Bufford

I sometimes wonder if I was bitten by a tick carrying Lymes disease.  When I was young I spent a lot of time outdoors, camping and playing in the grass and leaves.  The other possibility was being exposed to something coming from using common bathrooms, or possibly improperly washed cutlery at the summer camps I attended back then. There are many possibilities.
Lynda I find a little bit of humor goes a long way to lift one's mood and to help take my mind off of the pains and discomfort of this scourge one has to live with every day, every night.


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## scottsma

I like a spoonful of strawberry jam (jelly) dolloped in mine.


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## wwog

Hi All, I’m new here, 54 years young woman and new to being diagnosed after having an abscess/fistula surgery in November and another abscess surgery in Late February along with a clean colonoscopy in early February then another one April thay showed diverticula that wasn’t there 2 months prior.  Also have fibro, NASH/Fatty liver disease, (my appendix, gall bladder and ovary on same side are gone back in 2001) , I struggle with pretty much every medicine under the sun as my liver hates them all and gives me many of the bad side effects so have been on the heathy diet supplement side of things for years....lot of good it did me LOL.  I have had health problems for quite a while and none are text book types but have finally gotten diagnosed, found a great group of docs that actually care.  

Anyway, was recently on then taken off Azathioprine since my WBCs kept dropping, liver enzymes went higher and higher, then a severe blockage occurred to top it all off...only on the med for about 6 or 7 weeks.  Not sure what my doc is going to do next but she has suggested me going on full or partial disability.  Anyone have any advice on that?  I have always worked through everything but I just can’t do it anymore plus my boss is trying to work with me on this but I cannot even put in the hours anymore...fatigue and sickness is just getting worse.   This disease stinks more ways than one haha.


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## thike1966

Wwong,
I just applied for disability in Colorado. It takes 3 months to process and varies state by state. It's a Federal programs, but administered at the state level. There is a lot of fraud, which means you have to submit paperwork with zero errors. 

I take antidepressants for the massive mood swings Prednisone causes. The agent that took my application is a Crohn's patient and put down mental health issues, which will increase likelihood of approval.

BOTTOM LINE: APPLY AS SOON AS POSSIBLE AND BE CAREFUL NOT TO ERROR.


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## jnette

Greetings. Just turned seventy this month. I posted this the other day on the UC forum, then found this one here. Nice! Don’t feel so old now, being amongst my peeps.  
To save myself time and effort, I shall simply copy/paste what I wrote over there on the UC forum as my introduction.

Doc dx’d me with UC and proctitis approximately 6-7 years ago. I’ve been seeing my GI for nine years, mostly for recurring colon polyps. I’ve suffered with IBS for forty years.. may have been UC and proctitis for some of that time at least, but I just always passed it off as “spastic colon” or IBS (as did most of the docs I ever saw). Lots of cramping, frequent and urgent diarrhea , and “dumping syndrome” for decades. By the time I went for my first colonoscopy in 2010 (at the age of sixty one.. I know, my bad) my GI informed me that not only did he find a massive precancerous six cm polyp which I had to have respected, but that I also had UC and proctitis. At one point a few years ago, he also muttered something about borderline Crohn’s. 
So here I am. I had found this support forum in 2014 and posted in the Crohn’s forums a time or two.
My GI doc moved to Fla. this year and I had to find a new GI clinic. Hated that. Will meet my new GI in August and we’ll review my GI history together and go from there. Is it UC or Crohn’s? Maybe we’ll we’ll find out for sure which one.

The only thing I take is 500 mg Azulfedine (2) bid. But I have noticed more frequent flares this year and they are not one bit pleasant. A lot of constant low abdominal pain, (mostly right sided) and low back along the tailbone and rectal area. But instead of my usual diarrhea, I have done a 180 to frequent bouts of constipation. Shocking!  So NOT used to that.

I have never experienced bloody stools, as so many with UC describe, however. Occasional mucous, often shredded looking, or fragmented. But never bloody. So I’m still confused as to a proper diagnosis. Maybe this new GI can help provide an accurate picture of what’s going on. I’m on a q 2 years colonoscopy schedule due to polyps, including a sessile polyp last year. Ugh. Will check back here in August after meeting my new GI doc. In the meantime I do hope these flares calm down in duration and frequency.


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## jnette

So I just changed my avatar. *henh*. It fits.


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## curlywurly

Welcome jnette.
It was an eye opener to me when I found out there is so many of us over 50 when diagnosed
I was diagnosed at 54 & on the 8th August I will be 60. We all have a rollercoaster ride with this disease.
I do think a sense of humour is a must.


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## thike1966

Sense of humor, yes so important. I'm 53, diagnosed October 2017, and life is no BC, before Crohn's and AF, after Crohn's. Lost my brother suddenly last March and his final lesson to me out of many he taught me all out lives, is to take care of myself, so I can take care fo others. He helped so many people, friends and strangers, but sold himself short with 5 hour energy drinks and not seeing a doctor for his annual checkups for three years.


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## jnette

thike1966 said:


> Sense of humor, yes so important. I'm 53, diagnosed October 2017, and life is no BC, before Crohn's and AF, after Crohn's. Lost my brother suddenly last March and his final lesson to me out of many he taught me all out lives, is to take care of myself, so I can take care fo others. He helped so many people, friends and strangers, but sold himself short with 5 hour energy drinks and not seeing a doctor for his annual checkups for three years.


Gentle hugs to you. I’m so very sorry for your loss.


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## jnette

curlywurly said:


> Welcome jnette.
> It was an eye opener to me when I found out there is so many of us over 50 when diagnosed
> I was diagnosed at 54 & on the 8th August I will be 60. We all have a rollercoaster ride with this disease.
> I do think a sense of humour is a must.


Humor is absolutely ESSENTIAL with this crap..erm, I mean disease. Yes, we should all get a colonoscopy at fifty, for sure. In our forties,  if family members have serious GI medical history. I waited far too long. I’ve been after my daughter to schedule hers (she’s 42) since she has been having serious GI issues very similar to mine for the past several years.


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## PieSavant

I am 64 and was diagnosed with Crohn’s a few weeks ago.  I’m taking Budesonide and will start Entyvia infusions next month.  I feel so bad for the kids and young adults on these forums.


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## scottsma

Me too. I couldn't do it. Raising a family,going to work,paying a mortgage etc. Also teens in education and trying to have some sort of "teen" life....Respect to you all..


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