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02-10-2014, 03:24 PM   #31
LodgeLady
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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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Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

02-10-2014, 03:44 PM   #32
carbuncle
 
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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.
02-10-2014, 03:52 PM   #33
carrollco
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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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Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
02-10-2014, 04:38 PM   #34
LodgeLady
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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.
02-13-2014, 12:38 AM   #35
Mike58
 
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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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Crohn's DX October 2012. Ileum and small bowel resection August 2013. On Remicade, Methotrexate, Percocet, Lipitor, Insulin (type 2 diabetes), Metformin, Hypertension meds.
02-13-2014, 07:20 AM   #36
dave13
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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.
02-13-2014, 09:25 AM   #37
ellie
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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
02-13-2014, 09:29 AM   #38
ellie
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Oh, and I could take out shares in Yakult...


HD
02-27-2014, 07:59 AM   #39
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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.
02-27-2014, 10:33 AM   #40
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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
02-27-2014, 11:03 AM   #41
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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.


02-27-2014, 03:16 PM   #42
LodgeLady
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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.
02-27-2014, 03:50 PM   #43
Write2bheard
 
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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.


02-27-2014, 05:54 PM   #44
LodgeLady
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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.
02-27-2014, 07:19 PM   #45
Write2bheard
 
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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.



03-08-2014, 10:40 AM   #46
mdd
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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. take care one day at a time Maria
03-12-2014, 12:07 AM   #47
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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.
03-12-2014, 09:12 AM   #48
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Humira is not very effective (30%) and Remicade can wear one out. Maybe Methlytrexate or Cimzia. Stelara not approved yet but, will be soon.
03-12-2014, 11:15 PM   #49
Grumpy1
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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.
03-13-2014, 06:42 AM   #50
carbuncle
 
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Hi Grumpy,

Also, 6MP, Asacol with derivatives and a few others. Have localized trouble spots been identified?
03-13-2014, 12:18 PM   #51
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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.
03-14-2014, 01:21 AM   #52
Grumpy1
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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.
03-14-2014, 01:37 AM   #53
Grumpy1
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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.
03-14-2014, 10:27 AM   #54
carbuncle
 
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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.
03-17-2014, 09:12 PM   #55
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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.
03-28-2014, 08:39 PM   #56
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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?
03-28-2014, 08:46 PM   #57
Trysha
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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
03-28-2014, 10:23 PM   #58
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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.
03-31-2014, 12:11 PM   #59
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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.
03-31-2014, 05:00 PM   #60
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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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