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Diagnosed at age 50 & over Support Group

Hi Lulu.. :welcome:
Its a very rocky road somtimes to get the help and relief we so need.. it can be done as a few of us here have done it and got remisson periods.
Hang in there and dont be afraid to push for what you want and need re treatment..stand firm and they usualy give in to you.
Very best wishes and i hope you soon feel better💕💕
I agree
 
Hi Lulu.. :welcome:
Its a very rocky road somtimes to get the help and relief we so need.. it can be done as a few of us here have done it and got remisson periods.
Hang in there and dont be afraid to push for what you want and need re treatment..stand firm and they usualy give in to you.
Very best wishes and i hope you soon feel better💕💕
I am quickly learning how true this bolded statement is....Diagnosed in Nov 15, humira high loading trial did not work. Been admitted in hospital via Emergency twice this month- just got home a few hours ago from my latest- which was an obstruction. Saw my specialist almost 2 weeks ago. New drug regime of 9mgs entocort daily, 7.5 Methotrexate weekly (?) and Entyvio infusions. So far the only script I have is for the Entocort....The infusions can't be set up until the clinic gets the scripts....Yep I got on the phone and started breaking thru what seems like brick walls. Just got a call from the drug store the methotrexate has been ordered and filled....I told the GI clinic they have until tomorrow to get the Entyvio script to the infusion clinic. I'll leave them alone until then...I am taking control.....
 
Hello, anyone start a biologic for the first time after the age of 60? I am seeing data the side effects are worse after 60. I will be 62 in a few months, but have no choice in the matter. Have ulcers in my terminal ileum. Diagnosed a couple of years ago. I guess we're anomalies, getting Crohns late in life. I would appreciate any advice or encouragement. Not doing real well emotionally lately either. Thanks for your support!
 
RNGirl, I was diagnosed at 31 and was on other meds for years. I started Humira at about your age and its going to be 3 years in November. It works well, but has given me some psoriasis. Get yourself stabilized and you can live a normal life. And you have these wonderful people on this board to help. Use us.
 

dave13

Forum Monitor
Location
Maine
Hello, anyone start a biologic for the first time after the age of 60? I am seeing data the side effects are worse after 60. I will be 62 in a few months, but have no choice in the matter. Have ulcers in my terminal ileum. Diagnosed a couple of years ago. I guess we're anomalies, getting Crohns late in life. I would appreciate any advice or encouragement. Not doing real well emotionally lately either. Thanks for your support!
I started Remicade at age 50. I just turned 53 and so far so good. You are not alone with your worries about biologics.
 
Thank you Jack and Dave. Appreciate your kind words! Hope all is going well in your lives too. Not hard to dwell on this stuff and get depressed. Take care
 
I was initially diagnosed with Crohn's in December 2015, but it wasn't confirmed until June 2016. My biggest aggravation is with the diet restrictions. I am on a low fiber, high calorie, high protein diet. I actually get a little depressed when it is time to eat again and my options are so limited. I have had some moments of depression related to diet alone. Has anyone else experienced this?
 
Yes, very much so and posts are so limited because we are all different. I am a foodie, love to cook, have family sunday dinner every week etc...It has been tough. I, too, was diagnosed last fall. Due to 4 blockages since Aug, I am on low residue soft diet. I overdose on avocado, proteins, broths & cream (made with water) soups, crackers, eggs, lots of fish, surprising I eat a lot of cooked spinach and liver. V8 & fruit juices. I am discovering ways to enhance my safe foods and add them to the family diet- not always successful, but they can go to McDonalds if they don't like what I am preparing. My blood pressure has always been good, so I use a lot of salt for flavour. I've lost over 50lbs in less than a year, so I am not on fat restrictions. I overload with mayo. It is depressing, but I am trying to look at it as a challenge.

Currently with my history of blockages, keeping things flowing (6-10 times a day) is vital for me, until we can see if the Entyvio is going to work. I also started 40mg's of prednisone, on Cipro & Flagyl for a few more weeks.
 
I for sure have struggled emotionally with food too. I've also suffered my own bouts of depression with not being able to eat the foods the rest of the family enjoy. We are Italian and I have been cooking since I was 6 years old. I have signature dishes I can no longer eat, so have stopped preparing them. I am trying to eat to live now instead of live to eat. Didn't realize I had such an emotional relationship with food. Not glad to hear others are going through this, but glad to know there are others and we can support each other. People without these issues can't relate. Take care everyone and hope you heal soon!!
 

scottsma

Well-known member
Location
Tynemouth,
As if this darned disease doesn't ruin our lives enough !!! Enjoying food is a " basic human right" hahaha.But if it means making life easier in the bathroom then it's got to be worth it eh ?
 
Glad (or actually sorry!) to learn that I have so much company as an over 50 diagnosed victim of Crohn's. I may be the oldest of this group at age 75 having been diagnosed only two years ago. Well, at least that's when a physician presented me with a diagnosis. But in 1972 at the age of 31, I suffered a heavy rectal bleed eventually requiring a four unit blood infusion. Given the state of medical art at that time, only a flex-sig was available (before colonoscopys) for bowel exams so anything around the curve of the colon was a subject for speculation. When the bleeding stopped and no other symptoms presented, I was released from the hospital. Later, when I was 45 years old, my annual company physical exam required a colonscopy (the equipment by then had been developed) and for years no abnormalities other than one small polyp in the colon was discovered.
All was well until about two years ago when I began to experience irregular BM's, bloating and mucus discharge. Other symptoms included gut discomfort and rumbling, loss of energy and weight, and sleeplessness with pain in the legs and ankle joints. A colonscopy revealed inflammation of the Terminal Illium leading to a Crohn's diagnosis.
Since then I have been treated with a probiotic (VSL#3), an anti-inflammatory (Apriso), an immunosupressent, Budesonide, and eventually for the past three months with Humira. My GI believes that diet changes will likely have perhaps temporary but little material effect on my condition.
Some slight relief was provided by the earlier drugs, but it was only after being on Humira for three months that I began to see real progress and for about the last week I have been almost completely symptom free.
So, the moral of my story seems to be that there is hope for more of life after Crohn's, even after enjoying most of your life free from and even ignorant of this disease. Thanks to all subscribers for sharing their experiences with the disease and prayers and wishes for early and permanent relief of your symptoms.
 
Hello JLL and all,

It was so enlightening to read your post. I have been healthy as a horse until the last few years. Had a random screening colonoscopy a few years ago which showed mild linflammation in the terminal ileum. Inflammation has now transitioned into chronic inflammation with evidence of ulcers. I am interested in your experience with Humira as my GI is recommending a biologic. I have read that these meds are less tolerated as we age, I will be 62 soon. Can you give me some insight on how your course has been with the Humira? I know everyone is different, but encouraged you are doing well starting it as an older person. Possibly Devine intervention you posted, because I have been pretty distraught anticipating starting this med. Thanks so much to everyone for their support on this forum!! Take care!
 
RN Girl, I can certainly understand your reluctance to undertake a course of treatment with a Biologic. Just reading the boxed warning that the FDA requires posted on every ad for Humira, and the fact that they enclose the long list of serious or even fatal side effects with everything coming from the company can scare the dickens out of you. When my GI suggested that I take Humira my response was similar to yours. I searched the internet to learn all that I could about the incidents of side effects from Humira users and found more negative news than I could have anticipated...a large number of reports of serious medical problems and even a few deaths. I assure you that I gave it a lot of careful thought before proceeding. One of the things that I learned is that Humira is the most prescribed drug in the world, treating in addition to Crohn's, Rhumatoid Arthritis and Plaque Psoriasis as well as a number of other diseases, and as such serves millions and millions of patients. So the number of incidents of side effects versus success stories identified on the internet are almost to be expected since it's likely that fewer users take the time to document success than to complain about failure.
The fact that finally convinced me to proceed was my GI's advice that many of the negative side effect stories were from patients with other existing and/or more serious health issues, not to fault such patients for making the decision to take the risk since many very ill sufferers of Crohn's and RA and other auto-immune diseases are desperate for some relief. Fortunately I am in relatively good health so I decided to go ahead. That was my own personal decision process for what it is worth...yours likewise has to satisfy you personally.
As to my experience applying Humira, I self inject every two weeks. The auto-inject Pen is simple and easy to use, the needle only going to a depth of about one half inch and causing very little pain or bleeding. Thus far I have experienced none of the listed side effects. As reported in an earlier post, for nearly three months taking Humira I experienced little effect on my Crohn's symptoms, only a slight gradual reduction, but for about the past week I am nearly symptomless.
Sorry for being so wordy in my response and hope that this provides you some benefit.
 
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Thank you so much JLL. Very helpful. Thank you for taking the time to write such a nice response. So glad you are doing so well. Be well and take care. I see my GI on Dec. 8th. I'm praying for strength to make the right decision. Appreciate your help!
 
Hello RNgirl
I totally get your reluctance about Humira. Until I was diagnosed with this disease 4 years ago I hardly ever used any meds - now I'm a pro!
I have been on Humira for two years now and I can honestly say it is very easy to administer (especially with the new non-stinging formulation pen). If it works for you, then it is worth a shot. It can take a few months initially to see if it has an effect and you may still occasionally flare whilst on it; but for me out of all of the meds I have tried for Crohns so far, it is the only one that has had any sort of positive effect.
I am sure you will make the right decision for you.
Take care
 
Thank you CeeCeeGo. Encouraging. Has anyone on the 50 & Over support group started Stelara? Not sure what the GI will prescribe, but he is really old school and is retiring at the end of the year. Not sure he will even discuss an alternative to Humira. Unfortunately, I will be getting one of his partners as soon as I start the med, whatever it is. I know I just need to pray more and trust God will guide and support me through this. I really appreciate everyone's support too. One of my issues is I don't have the usual symptoms you would expect with Crohns. No pain, no bloody stools, 1 to 2 bowel movements a day. Eat pretty well too. I know I have ulcers in my terminal ileum and need treatment. Just afraid I am going to take a nose dive like what usually happens when I put a foreign substance in my body. I do have extra intestinal symptoms of joint aches, fatigue etc. and hoping the biologic will help with all of my other symptoms. Not complaining about the lack of pain, diarrhea. I am blessed in that regard and my heart goes out to everyone who is suffering with this horrible disease. Just struggling now and needed to vent. Thank you again and take care everyone☺
 
Thanks Ron. I think I read in an earlier post that Stelara wasn't very helpful for you. Appreciate your getting back to me. Hope you are doing well. Take care!
 
So do we really think that as "late- onsetter's" we tend to have a less aggressive desease than the younger folks? And if we end up having a resection for fibrotic strictures despite several years of no inflammation that we have better chance of longer remission and lower maintence drugs post surgery?
 

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome.I don't know about "late on-setters" having a less aggressive disease,but I suppose mine could be classed as such (so far).
What I do know is that I will be forever grateful that Crohns appeared as late as it did,when my days of education,work and child rearing were behind me.To many people with Crohns have to cope with all of those factors,while I have the luxury of only having to worry about myself.
 
I turn 55 years old this month, and I've been diagnosed during a routine colonoscopy.

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

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

I'll meet with the doctor on the 18th of the month, and I'm a little uncomfortable to have them give me all the worst case scenarios and drugs that they'll want me to take. I'm more apt to not do any drugs if I feel fine, and reassess when symptoms develop.
 
the danger with not taking maintenece meds is you end up needing surgery for fibrotic strictures...just the situation i am in now.

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

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

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

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

It is possible for someone with Crohn's to have inflammation of the intestines and have no symptoms. It is not very often this happens, but it can happen. If that is what the biopsies from your colonoscopy found, I would not recommend staying off meds that control the inflammation. Not treating it can lead to major damage needing surgery.
 
I agree with Dougute, I didn't have symptoms that I could identify as Crohns before I was diagnosed. I had occasional diarrhea and some joint pain but chalked that up to getting older and bad food. However in the 7 years since diagnoses I definitely know when I'm in a flare now and don't just think I have the flu. The problem with no symptoms is that the inflammation in your gut doesn't go away and gets worse. Or develops colon cancer. Or you have an obstruction. With medication I have been able to not have surgery like many Crohns patients have to have.
 
Thanks for the comments. Yes, I saw that there could be real issues down the road, but couldn't that be monitored? If they do a colonoscopy every 6-12 months, wouldn't they see an impending problem?

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

Also, I'm a pilot, so there are very real implications to drugs and the like.
 
They can monitor but I don't know if your GI would be comfortable doing a colonoscopy every 6 - 12 months. There's always a risk with sedation and with the camera. You would have to ask your GI about this.

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

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

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

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

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

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome.That's just terrible losing your benefits.I have the utmost respect for anyone who can hold down a job and / or raise a family with this damn disease.I usually have a reasonably easy time of it compared to most,but I couldn't work unless it was flexi hours on my terms.Luckily we're retired so it's not an issue.I don't know what to advise,but I hope things get better for you.
 
I’m sorry to hear that you lost your benefits. Is there a way to appeal this decision?

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

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

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

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


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

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

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome to the forum.I'm glad you're getting the ball rolling and I hope you begin to feel better soon.I can't advise on diet,as we're all different as to what triggers an upset.Your dietition will probably tell you to keep a food diary but it's a long slow process of ilimination.You'll do well to stay on the meds if they're helping,but if you have adverse affects discuss it with your GI as there are lots of alternatives to try until something suits your needs.There will be others along soon to offer support and advice.
 
Hi Halkigirl
Welcome to the forum I personally have not seen a nutritionist but you will find that this disease effects everyone different which is why it is difficult to treat. I have had reactions to different meds over the last five years. I have found that lager is a trigger for me so I haven't had any in five years.
I now suffer more with constipation and this brings its own problems, I take fibre in liquid form but it does not really help and I don't want to take it long term. I would take your GI advice before anyone else at this early stage to get you hopefully in remission.
 
I follow up with my GI this week and suspect there could be a change in medication since some symptoms have been helped and others have not. Was somewhat following the Paleo diet pre-diagnosis and am doing more strictly as doctor directed...and have been put on notice by my gut almost immediately when I've guessed wrong on what is safe, although sometimes difficult to determine the culprit in a few cases. Looking through past posts here it's clear I must be patient--didn't get sick overnight and won't feel better overnight either.

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

scottsma

Well-known member
Location
Tynemouth,
Diet is different for most.Usually best to steer clear of spicy,greasy,nuts.seeds,popcorn,although if you're doing paleo some of these won't apply.If in a flare a liquid diet for a few days,to rest your gut,might help.Also bland food,chicken (no skin)white rice,toast(white) bananas might help too.I know others will have lists of do's and don'ts that are best for them.You'll soon learn what's best for you.There are many on the forum who lead a perfectly normal life,career,family,vacations etc.so try not to be down-hearted,you're on the right track.
 
Hi Halkigirl
I am glad you will be seeing your GI this week as Scottsma has mentioned you will find your own triggers to what sets you off.
Unfortunately it is not a one size fits all disease we are all unique, hope you can find a medication that works for you.
Keep your chin up we are all with you.
 
I was diagnosed at age 51 at the end of last September.

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

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

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

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

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

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

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

I still have hope that I will someday be in remission, it will come some day.
 
Welcome Thike1966. Yes, fibre can be terrible for some of us. I have to keep away from kale, quinoa, flax, most nuts and seeds. For some reason I can tolerate oatmeal and salads with lettuce doesn’t hurt me - just goes through undigested. It helps to do a food diary so you know what to avoid. Also if the symptom of a flare start, I go to a clear liquid diet for a few days then go on the BRAT diet (bananas, rice, applesauce, toast). Don’t be afraid of asking advice - we’ve all been through a lot and can often give some suggestions. Please do check things out with your GI doc though - they are often the best source of information and what to do for your health.
 
Thike1966, I had a tortuous journey to my diagnosis as well, losing 50 pounds or more over six months, and I wasn't a large person to start with. Finally after several visits to University of Chicago they found the problem on an X-ray table. The surgeon came in and said I had an abscess that had burst and I wouldn't survive the night. They gave me a transfusion and I felt like a new man. Then they took me to surgery for an ileostomy, which was reversed 6 months later.

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

And of course, this board is a terrific resource.
 
JackG,
Thank you for the hope and I can't wait to be well enough to play golf again with my father. When I get into remission, I will throw

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

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

And also thank you to rrhood for the welcome.
 

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome.I agree with all of the above replies to your post.There is always someone around who will give you advice and support.At first diagnosis everything is stressful as there's so much to take in.Just go at your own pace and do what's best for you.We're all different,so what works for some won't work for others.Diet in particular.
I'm so sorry for your Mother's demise,and maybe the underlying stress brought your crohns to a head.Stress is not good.I'm glad you found us and I hope you feel better soon.
 
Hi thike1966
Welcome to the forum, like you the year I was diagnosed 2013 I had l lot of stress losing a friend to cancer and being made redundant.
I do believe it had a bearing on me being ill, I have had numerous different tests over the years because of my reactions to different meds.
The last test was for Small Bowel Bacterial overgrowth I had to take antibiotics I don't think they have made much difference as I still get bloated and constipated.
I hope you find a suitable medication to get your life back on track.
 
Curlywurly,
I am reading a book about Microbiome written by a GI doc who promotes using probiotics to over come the loss of good bacteria that are lost with antibiotics. It takes time to rebuild, sometimes months. But it ilooks promising. My nutritionist has me on Florator and Renew Life Ultimate Flora 50 Billion.

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

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

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

Regardless, I wish you well and hope that you find a solution.
 
I've just been diagnosed with crohns colitis at the age of 52, like others I've had issues on and off for years and finally got things sorted.
I'm still in a bit of denial as I really don't want this at this stage of my life. I am going through a divorce, was made redundant mid last year, and general stress levels have been high. Hence longer and more severe issues leading to a diagnosis, after constantly being fobbed off by my GP saying every issue I had was "stress".
Emotions are up and down, exacerbated by prednisolone.
It's hard dealing with this and living alone too, my cleaning was just not done for the past few months while I've been really sick.
I should be grateful to at least have confirmation of a diagnosis that I have been fairly suspicious of for years. I even changed my fridge over a few years ago as I was sure I was giving myself gastro because the temperature must not be right!
Anyway I think I'll be right once I adjust and once I get a treatment regimen that I am comfortable with
 
Hi Thike1966
Thanks for the info on the books I have also been reading about the Gut and how it works
it is quite interesting.
A doctor over here in England has wrote a book called The Clever Guts Diet even though it is not a diet but a new way of eating.
He talks about the gut having its own eco system and what it needs to keep healthy.
I try to eat like it says how to get more probiotics in my diet and more exercise.
I will give you the Authors name you may find the book helpful Dr Michael Mosley.
 
rrhood and JackG,

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

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

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

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

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

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

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


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

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

Lynda Lynda

Senior Member
Location
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Thank you for reviving this thread.

I was just diagnosed with Crohn's and I am 57 years old.
I was diagnosed with Ulcerative Colitis in 2006.

Yeah, I hate it when my doctors sometime attribute all my health issues to "old age". I am only 57 years old !

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

Lynda Lynda

Senior Member
Location
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Has anyone had UC first, then been diagnosed with Crohns later on ?

My gut started to get real sick in 1997.
I had a flexible sigmoidoscopy and upper gi tests.
I believe my doctors said that I had IBS, but that was so long ago I cannot remember.
No one ordered me a colonoscopy at that time.
I gave up on these doctors after this diagnosis.

But I kept being sick, even though my PCP started me on Questran. The Questran helped but not enough.

My first colonoscopy was in 2006 and I had a good doctor and was diagnosed with UC.
I started Asacol and then Lialda.

I had a colonoscopy in the hospital in 2009, I cannot recall the results.

A colonoscopy in 2014 showed normal ( the doctor I saw was not a good one and I only saw him once. )

In 2016 I had gone to the ER three times for colon and stomach related issues. ( Blood in stool, severe constipation, dry heaves, stomach pain. )
My new GI doctor ( first saw him only for C-diff treatment in 2015 ) said take Miralax.
What kind of advice is that !
I think three trips to the ER would warrant a colonoscopy !

In late 2017 my colon symptoms were changing.
I saw this same GI.
He was now very attentive and efficient and started ordering all l the right tests and procedures.
I was diagnosed with Crohn's. ( terminal ileum/inflammation/ stricture. )
I am starting treatment soon.

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

Along the way I have also had an anal fistulectomy and two rectal abscess surgeries.

❤
 

scottsma

Well-known member
Location
Tynemouth,
I know IBD has a tendancy to spread from one place to another.I was diagnosed in 2006 with Proctitis and then about four years ago with Crohns colitis. It is possible you've had IBD for years but some doctors will tell you IBS at first.I'm happy to know that you've now had a positive diagnosis.It's the not knowing what's going on that's stressful.
 
Location
San Diego
Could I have had Crohns all these years instead of UC ?
Yes, that is quite possible. UC and CD are very similar diseases that are sometimes hard to distinguish by even the best GIs. This is especially true when the disease is confined to the large bowel, since activity in the small bowel is one of the distinguishing features of Crohn's.

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

Lynda Lynda

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

Never say never, but pretty much all these cases of "UC that turned into CD" were CD all along that was mistaken for UC in the early going.
Thank You. 🌻
Yes, this has been my case.
They said IBS in 1998.
They said UC in 2006.
They said Crohns in 2018.
 

Lynda Lynda

Senior Member
Location
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I think having an IBD has made me age faster? I looked at photos of me from 8 years ago and I looked so much younger. Of course I have multiple health issues but having a sick gut seems to drag me down and zaps what little energy I have out of me. 😕
 

scottsma

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

Lynda Lynda

Senior Member
Location
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I'm 58 years old now and the other day I realized I am almost 60 ! I don't feel close to 60. My parents seemed "old" to me when they were in their early 60's. But they lived a way tougher life than I did. Well I'm gonna make it to 85. ( I've had this number picked out for years 😄 )

Now when is my Humira gonna be delivered 😠
 

Lynda Lynda

Senior Member
Location
N/A
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 know this a really old post, but this is the first post that has mentioned memory and concentration affecting job performance. The same thing happened to me 12 years ago. I always thought my terrible memory, concentration and focus problems at the time were due to mental illness. My UC diagnosis and mental health issues were happening the same year. I had suffered a trauma. And I lost 60 pounds. I will never know if my newly diagnosed colon disease or my mental health issues caused these memory, focus and concentration problems. Maybe both?
 

Lynda Lynda

Senior Member
Location
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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. :)
Tell me more about CARRAGEENAN.
I am drinking Ensure Drinks right now, as this is all I can tolerate. The Ensure Drinks contain carrageenan. With these drinks I have less bowel movements. Today my first BM wasn't until 5:30pm !

Also, what about all those "gums" they put in food now....guar gum, tara gum, etc. These gums make food products thicker and affects the taste.

Then there are the sweeteners made from sugar alcohols.....mannitol, xylitol, sorbitol. These can cause people to have diarrhea.

Then there are "ice creams" that are NOT ice cream at all, but labeled "frozen desserts."

My comments / questions should be on one of the food threads. ( PS : Vegan "cheese" tastes like vomit and is not healthy. )

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

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

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

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

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

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

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

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

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

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

Wishing you all well,
Merv
 
Hi Merv and welcome. Tragically your story is typical of all of us.

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

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

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

Keep us posted cause we support each other.
 

scottsma

Well-known member
Location
Tynemouth,
Hello Merv and welcome aboard, but sorry you have to be here of course.

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

Bufford

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

Lynda Lynda

Senior Member
Location
N/A
Oh, Bufford, I am so sorry you have had to suffer so much for so long. 😢

I enjoy reading all your posts. They give me hope as well as make me laugh. 💕

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

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

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

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

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

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

Bufford

Well-known member
I sometimes wonder if I was bitten by a tick carrying Lymes disease. When I was young I spent a lot of time outdoors, camping and playing in the grass and leaves. The other possibility was being exposed to something coming from using common bathrooms, or possibly improperly washed cutlery at the summer camps I attended back then. There are many possibilities.
Lynda I find a little bit of humor goes a long way to lift one's mood and to help take my mind off of the pains and discomfort of this scourge one has to live with every day, every night.
 
Hi All, I’m new here, 54 years young woman and new to being diagnosed after having an abscess/fistula surgery in November and another abscess surgery in Late February along with a clean colonoscopy in early February then another one April thay showed diverticula that wasn’t there 2 months prior. Also have fibro, NASH/Fatty liver disease, (my appendix, gall bladder and ovary on same side are gone back in 2001) , I struggle with pretty much every medicine under the sun as my liver hates them all and gives me many of the bad side effects so have been on the heathy diet supplement side of things for years....lot of good it did me LOL. I have had health problems for quite a while and none are text book types but have finally gotten diagnosed, found a great group of docs that actually care.

Anyway, was recently on then taken off Azathioprine since my WBCs kept dropping, liver enzymes went higher and higher, then a severe blockage occurred to top it all off...only on the med for about 6 or 7 weeks. Not sure what my doc is going to do next but she has suggested me going on full or partial disability. Anyone have any advice on that? I have always worked through everything but I just can’t do it anymore plus my boss is trying to work with me on this but I cannot even put in the hours anymore...fatigue and sickness is just getting worse. This disease stinks more ways than one haha.
 
Wwong,
I just applied for disability in Colorado. It takes 3 months to process and varies state by state. It's a Federal programs, but administered at the state level. There is a lot of fraud, which means you have to submit paperwork with zero errors.

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

BOTTOM LINE: APPLY AS SOON AS POSSIBLE AND BE CAREFUL NOT TO ERROR.
 
Greetings. Just turned seventy this month. I posted this the other day on the UC forum, then found this one here. Nice! Don’t feel so old now, being amongst my peeps. 😁
To save myself time and effort, I shall simply copy/paste what I wrote over there on the UC forum as my introduction.

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

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

I have never experienced bloody stools, as so many with UC describe, however. Occasional mucous, often shredded looking, or fragmented. But never bloody. So I’m still confused as to a proper diagnosis. Maybe this new GI can help provide an accurate picture of what’s going on. I’m on a q 2 years colonoscopy schedule due to polyps, including a sessile polyp last year. Ugh. Will check back here in August after meeting my new GI doc. In the meantime I do hope these flares calm down in duration and frequency. 🙁
 
Welcome jnette.
It was an eye opener to me when I found out there is so many of us over 50 when diagnosed
I was diagnosed at 54 & on the 8th August I will be 60. We all have a rollercoaster ride with this disease.
I do think a sense of humour is a must.
 
Sense of humor, yes so important. I'm 53, diagnosed October 2017, and life is no BC, before Crohn's and AF, after Crohn's. Lost my brother suddenly last March and his final lesson to me out of many he taught me all out lives, is to take care of myself, so I can take care fo others. He helped so many people, friends and strangers, but sold himself short with 5 hour energy drinks and not seeing a doctor for his annual checkups for three years.
 
Sense of humor, yes so important. I'm 53, diagnosed October 2017, and life is no BC, before Crohn's and AF, after Crohn's. Lost my brother suddenly last March and his final lesson to me out of many he taught me all out lives, is to take care of myself, so I can take care fo others. He helped so many people, friends and strangers, but sold himself short with 5 hour energy drinks and not seeing a doctor for his annual checkups for three years.
Gentle hugs to you. I’m so very sorry for your loss. 😢
 
Welcome jnette.
It was an eye opener to me when I found out there is so many of us over 50 when diagnosed
I was diagnosed at 54 & on the 8th August I will be 60. We all have a rollercoaster ride with this disease.
I do think a sense of humour is a must.
Humor is absolutely ESSENTIAL with this crap..erm, I mean disease. Yes, we should all get a colonoscopy at fifty, for sure. In our forties, if family members have serious GI medical history. I waited far too long. I’ve been after my daughter to schedule hers (she’s 42) since she has been having serious GI issues very similar to mine for the past several years. 😕
 

scottsma

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