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Diagnosed at age 50 & over Support Group

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.
 
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!
 
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).
 
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.
 
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.
 
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.
 
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
 
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.
 
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
 

dave13

Forum Monitor
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.
 
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.
 
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
 
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
 

dave13

Forum Monitor
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.
 
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.
 
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. :poo: 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.
 
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.
 
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.
 
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 ?
 
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.
 

dave13

Forum Monitor
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.
 
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
 
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>
 
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.
 
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.
 
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.
 
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).
 
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...
 
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.
 
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.
 
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.
 
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....
 

dave13

Forum Monitor
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.
 
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
 
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.
 
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
 
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.
 
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?


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.
 
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.
 
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?

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

Trysha

Moderator
Staff member
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
 
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.
 
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.
 
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
 
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.
 
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
 
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
 
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
 
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?
 
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.
 
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
 

dave13

Forum Monitor
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!
 
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.
 

dave13

Forum Monitor
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! :)
 
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.
 

dave13

Forum Monitor
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.
 
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.:)
 
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!
 
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.
 
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
 
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
 

dave13

Forum Monitor
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
 
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
 
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.
 

dave13

Forum Monitor
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
 
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

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

dave13

Forum Monitor
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 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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