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Diagnosed at age 50 & over Support Group

scottsma

Well-known member
Location
Tynemouth,
Didn't fancy smearing my nether regions with white of egg �� so have bought some germaloids suppositories to try for a week. If they don't work then it's off to the GP to see if she has a miracle cure.
Bunty x
Don't forget to share if she has.....:)
 
has anyone taken colestipol. it has been giving me pain but it made my bms less. i am also on cimzia. one doctor told me not to go on entivio.as long it keeps my crohns under control dont worry about your bms.
 
I am so annoyed. My husband had a minor operation today and probably because we got up so early, I forgot to take my own food. Went to the cafeteria - because of all the things I shouldn't eat, all there was ,was yogurt and tea. In a hospital, which has lots of people with special dietary needs and which if you don't, has a great menu. Good thing it was a quick in and out.
 
Have been doing my own experimentation. Have been taking 2 Billion CFU Lactobacillus Acidophilus at the start of every meal.

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

scottsma

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

Lifes never dull.
 
Location
UK
So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
I confess to knowing little or nothing about this supplement, I'm just asking the questions ☺
Bunty x
 
So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
I confess to knowing little or nothing about this supplement, I'm just asking the questions ☺
Bunty x
I don't take any of that stuff.
 
My doctor and my dietitian said it was a good thing to try out. They mentioned that there are a few blind studies being done on Crohn's patients with probiotics.
 

scottsma

Well-known member
Location
Tynemouth,
I have used probiotics in the past and have had no adverse effects.If I use something else,ie: another supplement or diet exclusion/inclusion,I stop the one I've been on longest otherwise it's difficult to know what's working and what's not.
I've had no problems with anything except some food. Alas,it's all the food stuffs I love !!!
 
Location
UK
It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment.
I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
Bunty x
 

scottsma

Well-known member
Location
Tynemouth,
It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment.
I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
Bunty x
Keep us updated Bunty,it's always interesting to hear what others have been advised (and confusing)!!!
 
I was diagnosed with Microscopic Colitis found during my colonoscopy. Entocort always worked but the thing is with that medicine, one day it will no longer work. I've had explosive diarrhea for six months now. My son was getting married and I was worried about making it through the wedding and there was a 100 mile trip to get there and nothing was working!

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

So much for my Golden Years!
 
I fortunately don't have diarrhea with my IBD, but I have such terrible pain behind my belly button I cannot function very well. My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad that I am hanging on to living with my fingernails...
My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer. I am surely not eating enough. Right, these are my Golden Years!
 
I continue to take two types of probiotics. One extra strength at breakfast and the other meals I take a complete one.

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

scottsma

Well-known member
Location
Tynemouth,
Hi,and welcome to all of you above.Sorry you have to be here at all of course !!!

I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?:poo:
 
I fortunately don't have diarrhea with my IBD, but I have such terrible pain behind my belly button I cannot function very well. My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad that I am hanging on to living with my fingernails...
My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer. I am surely not eating enough. Right, these are my Golden Years!
I must have a similar type of Crohn's. My problems are pain in that same area, radiating across, constipation, obstructions, and now possible rectal prolapse. I've tried lots of drugs and now I'm taking Entivyo infusions. Just had my 3rd one, but not sure this will be my miracle. Just have to wait. Are you still working? I'm finding it harder and harder each day.
 
Hi,and welcome to all of you above.Sorry you have to be here at all of course !!!

I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?:poo:
I've had my gallbladder out for many years but it is only the last couple of years that I don't seem to be absorbing fats at all. I also have a lot of pain if I eat most vegetables, but carrots, potatoes and beets are OK in moderation. I am Celiac and allergic to Casein so taking any of those causes great gas and pain as well as diarrhea.

I am surprised that I seem to be accepting these increasing limits, though last night at a restaurant that serves very good buns I really was not a happy camper.
 
peluchde, I am retired except I am a church organist so do subbing jobs. There is no way I could work feeling the way I do. I've had this 5 1/2 years and lost 30 pounds the 1st 2 months and then another 10 since. I was not diagnosed until Jan. '14 so just lived with pain and was given anti depression and anti anxiety meds for 4 years....which of course was no help, but the GIS i saw said I had reflux...the one I see now gave me a pill camera which saw 9 ulcers and I was finally diagnosed. I have gone through a number of meds. Now he told me I could have developed antibodies to the Remicade! i don't see him for 3 weeks so just have to live through this....it is very difficult. I pray a lot! And Terri, I don't seem to absorb fats either. And they usually cause pain. Have you heard of the FODMAP diet? It has helped me a lot, not with healing, but with knowing what to eat and what not to eat.
Root veggies are the best for me, and spinach, green beans, bok choi...no cabbage family.
Also it came take a week or 2 to get over the anesthetic you had for your gall bladder surgery.
 
Crohns @ 57.59 now and 2 flares in 6 months.Im going nuts because the meds they want to put me on have severe sides.Prednisone worked but they don't want me on long term.Cancer in 2011 and some of these meds may cause cancer. So I'm with you. I hate the thought of losing my independence.
 
I am having a TERRIBLE flare up, can't eat, can't do anything, just lay on couch with heating pad. I see my dr in 2 days; hope he can make my life bearable.....
 
Get second infusion of Entyvio tomorrow so far so good....all toes and fingers crossed, touching all sorts of wood etc. Hope everyone is well.
 
I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability. I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do. I'll be 60 in a few weeks and I've had 9 hospitalizations so far. I can't function at work anymore.
 
I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability. I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do. I'll be 60 in a few weeks and I've had 9 hospitalizations so far. I can't function at work anymore.
Hello, I had to retire early because of Crohn's, too. And I got on social security disability, but I had to get an attorney to do so. Unfortunately, it seems to be essential to have one before you will be approved. It took me almost 2 years, but I stuck with it and finally got approved. Good luck to you, and I hope they get your symptoms under control.
 
I am having a TERRIBLE flare up, can't eat, can't do anything, just lay on couch with heating pad. I see my dr in 2 days; hope he can make my life bearable.....
I just went through a horrible flare, and the only thing that saved me was prednisone. I'm still recovering in bed with some abdominal pain, but nothing like it was. My GI told me prednisone is the only thing that can help a severe flare. I hope you find some help soon. I know what sheer hell it is.
 
I am in my mid 50's and diagnosed with Crohns on Tues of this week. I have had very loose stools for about 2 years which has developed into diarrhea all morning- every morning. And then severe pain the rest of the day & night which I guess is the digestive process. Some foods are easier than others, but all are proving problematic. I am currently into what is a flare up- I think. Have only seen my GP, and was diagnosed by CT scan & blood work. Waiting to see specialist in 2 weeks for treatment options and scopes. I am depressed after reading these forums as to what may lie ahead. I'm not sure I can do this!! :cry::cry:
 
Thank you for your support. I hired an attorney to help me through the SS Disability process. Everyone has told me it will take 2 years, so I am prepared for the long wait. Now, I just hope I can afford my health insurance while waiting. Hard being sick, exhausted, and stressed, but at least I don't feel guilty about not doing my best at work.
 
I am in my mid 50's and diagnosed with Crohns on Tues of this week. I have had very loose stools for about 2 years which has developed into diarrhea all morning- every morning. And then severe pain the rest of the day & night which I guess is the digestive process. Some foods are easier than others, but all are proving problematic. I am currently into what is a flare up- I think. Have only seen my GP, and was diagnosed by CT scan & blood work. Waiting to see specialist in 2 weeks for treatment options and scopes. I am depressed after reading these forums as to what may lie ahead. I'm not sure I can do this!! :cry::cry:
You can do this! You've had the symptoms for awhile and maybe now someone can help alleviate some of them. There's lots of meds that work, but the problem seems to be that they stop working after awhile and you have to try something else. Good luck to you😊
 
I was diagnosed in January, I have fiddled around with probiotic - my diet (allergic to gluten and casein) and will be going to have a spiegle(sp?) hernia fixed on Tuesday.

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

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

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

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

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

It is doable for sure.
Thanks to both of you. It is all so Greek to me- the language, terminology, even body parts I never heard of!! Steep learning curve for sure. Today I ate eggs, toast, chicken noodle soup & salmon- I have some gurgling, but no great pain. Trial & error!!
 
Thanks to both of you. It is all so Greek to me- the language, terminology, even body parts I never heard of!! Steep learning curve for sure. Today I ate eggs, toast, chicken noodle soup & salmon- I have some gurgling, but no great pain. Trial & error!!
I find that when I have diarrhea if I eat something with rice in it I get a lot better, a lot less pain also.
 
Hi, I saw your posting about prednisone being the only thing to help... predisone is a very CHEAP steroid which causes many side effects. There are some targeted steroids like UCERIS which is quite expensive for Medicare Part D people but it targets the terminal ileum where most Crohns happens..... about $10 per pill!

Good luck
:medal1::medal1::ysmile::ysmile::poo::poo:
 
Eastcoast902, have you looked/tried the FODMAP diet? It is a starting point to help one find the foods that trigger diarrhea. I have used it as a baseline for 5 years, since I first found it on FACEBOOK. There is a book, IBS Free at Last, but it also helps people with intestinal ulcers as it deals with foods that cause gas and fermentation in the intestines.
It saved my life, although did not make me healthy. The meds I'm on, "endicort" right now, have really helped but it seems this disease requires different meds for different people...frustrating for sure.
 
Doing prep for 2 scopes tomorrow, have to drink another dose of Pico-Salax at 10pm....am I going to be awake all night?

Saw the Specialist and he is recommending Entocort or Imuran. I told him I would research them and let him know ( No drug coverage) . What has the experience been for folks with these. Apparently there is a 40cm section of lower bowel that is thickening. I guess the scopes will determine the level of damage or disease.
 
EastCoast, I have taken Entocort and it is by far the better choice vs Prednisone. It is not supposed to be a maintenance drug. Imuran would be a maintenance drug once under control from Entocort.
 
I changed my GI and finally got a Pillcam SB. He is really questioning my diagnosis as I've also just been diagnosed as having colonic inertia. But hopefully the Pillcam gives me the final piece to this puzzle. I had the test Monday but I have not seen the pill pass. How long should I wait before being concerned?
 
Eastcoast 902: I agree with the earlier post, look into the FODMAP diet. I have fiddled around with other diets to keep my symptoms in check. Tried Paleo, got worse. Doing the FODMAP diet, realized I am a Fructose and artificial sweetener malabsorber. Bad bloody diarrhea and systemic reactions hitting every body system for several weeks after eating these things. It's not an easy diet to follow, but it's an eye opener. I had no clue the foods I loved the most were making me very sick. The goal is to know how much of the foods you react to you can have before you have a reaction. I have had some flub ups for sure, but at least now I somewhat know what I CAN'T eat. You have support here and you can do this. I am depressed at times too, but we are all in the same boat and it could always be worse. Take care and hang in there!
 
LodgeLady, it does not matter whether you see or know when the pillcam passes. The recorder you wear records everything the camera sees; the camera itself is irrelevant after it has recorded your system. Unless you want to sell it on eBay.. ha ha....it's a great tool. I was diagnosed after 4 years of pain with it. Other tests showed nothing. And, Eastcoast, I would take the Endecort first. Be sure to take it with food. I learned that after months of taking it wrongly!
 
LodgeLady, it does not matter whether you see or know when the pillcam passes. The recorder you wear records everything the camera sees; the camera itself is irrelevant after it has recorded your system. Unless you want to sell it on eBay.. ha ha....it's a great tool. I was diagnosed after 4 years of pain with it. Other tests showed nothing. And, Eastcoast, I would take the Endecort first. Be sure to take it with food. I learned that after months of taking it wrongly!
Thanks,,,just waiting for my drive for the scopes. Starving & Scared $hitless (pardon the pun).
 
Location
San Diego
From last July:
"A question....does this disease behave differently in us older folk in terms of being more rapid in progression and severity, or less so because our bodies have slowed down?"

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

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

fuzzy butterfly

Well-known member
Oh well glad i was 50ish when dxd. Might miss out on fistulas n strictures.. and i cant tolarate aza .Not tried 6mp,maybe i shouldnt if offered it at some point. Currently on no meds after resection march this year.
Best wishes to all 💞
 
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Just came back from my appointment at the Mayo in Jacksonville. I have a local doctor, but I never feel comfortable with him and I've changed practices twice already. My damage cannot be seen by endoscope or by colonoscopy. It is in between the areas they can view. Last pillcam I swallowed stayed in for 42 days! It showed all the ulceration that is causing me pain. Mayo says no more pillcam so. A double balloon enterography is scheduled for next month. My local doctor scheduled an MRI w/contrast and it showed no areas of thickening, but it's unable to show ulceration which I'm sure is causing my pain.
As far as drugs, I have seemed to be on them all. For me, Entocort is preferable to Prednisone. I can't take Imuran as my liver enzymes went sky high within a week or so. Humira stopped working after 4 1/2 years and now I'm trying Entiviyo. My journey with CD consists of small bowel obstructions and days of constipation followed by diarrhea. Love when I have some normalcy in my life.
 
Scopes over and were surprisingly quite easy with lots of sedation!! I was worked up for nothing!! Referral coming for GI specialist, but Scope Doc gave me a script for Entocort- 9mgs in the morning and 9 mg's at night....I didn't think that dosage seemed right, based on my research. Called the pharmacy to confirm and he said, no, not right....told me to just take 9mgs in the morning and he would call Doc on Monday.....sigh....doesn't give me much confidence in the Doc. Glad for the GI referral. The scope Doc is a general surgeon who just happens to do the most Crohn's surgery in my town.

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

I am a foodie, and love preparing meals for the family & friends. Having a hard time doing planning for the holidays....the new normal. Yes, I am feeling sorry for myself!! I'll get over it.
 
peluchde, so sorry you are still in pain. I, too, was undiagnosed for 4 years as the colon and endosccope showed nothing. Only the pill cam showed the 9 ulcers which had been giving me pain for 4 long years. This is such a difficult disease!
 
Diagnosed with indeterminate IBD (mixture of Crohn’s and UC) at 54 years old.

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

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

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

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

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

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

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

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

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

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

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome. I'm very happy that you're feeling better. Long may it last. It's good to hear positive feedback,it gives hope to those who may be struggling with this dratted disease.But please don't get to complacent, as crohns can be sneaky and pounce when you're least expecting it. Mind your diet and stress levels. Best wishes.
 
Hello and welcome. I'm very happy that you're feeling better. Long may it last. It's good to hear positive feedback,it gives hope to those who may be struggling with this dratted disease.But please don't get to complacent, as crohns can be sneaky and pounce when you're least expecting it. Mind your diet and stress levels. Best wishes.
Thanks for reply. Maybe have been too complacent. All good so far. Have a good New Year.
 
Hello! I am 57 and was diagnosed in the late 1980's after a few years of symptoms. But had a couple decades of quiescence before major symptom return. So I am like a hybrid of both early diagnosis and later resurgeonce.

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

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

fuzzy butterfly

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

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome to you.It's sad that you are suffering again, after such a long remission.
You probably were hoping you'd seen the end of it, after all that time.
One good thing (?) is that you will know what to expect,more or less.Things have progressed since you were first diagnosed,but I think they still try meds etc. first and only operate as a last resort.I'm sure someone will be along soon with more advice,and you will also get lots of support.Of course, you will also be a help to others with your past experience.Best wishes,hope you feel better soon.
 
Evening all, sad to see so many new faces here, and especially for this reason. I'm just dropping in to say hey and see how everyone is. Still struggling with drugs but still keeping on. I hope that you all have a wonderful week and that things get better for all.
 

fuzzy butterfly

Well-known member
Ye Grumpy it is sad that we are collecting new members so rapidly. Though its good they found our motely crew, now they wont feel alone or not understood. They are now in touch with people who really know how it is. Who will give love,support advice n freindship.
So it aint all bad they are here. ☺💕. Have a great week yourself Grumps. :hug: 💞
 
Mandy,
It is good that they found our motley crew, just the reason is unfortunate. There is no doubt that they will find friendship, support, advice, and kindness here in abundance. That is the coolest thing about this forum, someone, somewhere on here has experienced what you are going through right now and will have some idea on how to get through it. I have made some very special friends and appreciate every day that I found them so you are correct without this forum it would be much more difficult to face this nasty disease alone.
 

fuzzy butterfly

Well-known member
Hey Grumps nice to see you ☺ hope you are doing well..
It very true this site is the BEST. Such lovely friendly helpful people here. I feel like I have found a new family here. Who i care for deeply. Made some very good friends myself. For a site about crohns i also find it very uplifting too. The humour and banter cheer up my days a lot. It is most appreciated as you say. Wishing you good health Grumps. :hug: 💕
 
Diagnosed 2008, at 53.
Just started this posting thing yesterday, and found it to be friendly and helpful to communicate with others dealing with the same or similar issues, although it will take some time to get use to it.
I'm only on Pentasa at this time. Main issues during flares are severe abdominal pain due to strictures. Proper eating for me and stress reduction seems to help, although my GI states next time I"ll need to have surgery or stronger medications.
Glad to be connecting with this forum.
 

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome.You've come to the right place for support and advice.Nothing Crohns related is taboo.There is always someone who can empathise with you and your symptoms.Take your time and have a look 'round.There is to much to take in at once,and I will advise you not to get alarmed.We are all different,(crohnies mantra,) and that means symptoms,diagnosis,meds,surgery,diet and lifestyle.Best wishes.:)
 
I do appreciate all the welcomes. Yes, there is a lot to take in with all the support groups and variety of people with different issues etc. It seems like a helpful, caring forum to be able to talk with(text) those dealing with similar health concerns.

Thanks again for all the welcomes from everyone.
 
Hello everyone, I haven't posted in a while. Hope everyone is putting up a good fight and feeling well! I need input and advice:

Anyone have a CT Enterography to assess the small bowel and have an intolerance to artificial sweeteners? I was challenging the FODMAP diet and had a horrible flare to artificial sweeteners. It put me into a flare from just eating a few tums (generic brand) and some Walgreen's brand Maalox. The contrast has like Sorbitol or something in it. I know I need to do this test for diagnostic purposes, but wondered if anyone else was able to tolerate and get through it with this intolerance or did the radiologist accommodate you and use something else? Thanks so much!
 
Hey Grumps nice to see you ☺ hope you are doing well..
It very true this site is the BEST. Such lovely friendly helpful people here. I feel like I have found a new family here. Who i care for deeply. Made some very good friends myself. For a site about crohns i also find it very uplifting too. The humour and banter cheer up my days a lot. It is most appreciated as you say. Wishing you good health Grumps. :hug: 💕
Thanks Mandy,

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

fuzzy butterfly

Well-known member
Hi Grumpy. No worries on the reply. We all have other things to be busy with ☺ Thanks im doing ok at the mo.
I hope you are doing ok and keeping as well as possible.
I try to keep humour a part of my life, as i know i feel better for a chuckle,so hopefuly it will help others feel a little better for a wee while. ☺
Take care :hug:
 
I am 67. I was diagnosed during routine colonoscopy a few years back, which was a shock since I did not have any symptoms. Even up today my symptoms are mild, no pain, but on and off diarrhea. I have been advised by more than one doctor to NOT start medication, which I have gladly agreed.
My challenge, at least up to now, is to manage my diarrhea, which I have tried to do by minimizing carbs, specially bread and pasta. I though this will help because of what I read on intestinal inflammation diseases, i.e., the specific carbohydrate diet, etc. But frankly I have not reduced carbs enough to see if it works, so I do not know if that is a solution and unfortunately continue to struggle with diarrhea. Does anyone out there have an idea?
 
I am 67. I was diagnosed during routine colonoscopy a few years back, which was a shock since I did not have any symptoms. Even up today my symptoms are mild, no pain, but on and off diarrhea. I have been advised by more than one doctor to NOT start medication, which I have gladly agreed.
My challenge, at least up to now, is to manage my diarrhea, which I have tried to do by minimizing carbs, specially bread and pasta. I though this will help because of what I read on intestinal inflammation diseases, i.e., the specific carbohydrate diet, etc. But frankly I have not reduced carbs enough to see if it works, so I do not know if that is a solution and unfortunately continue to struggle with diarrhea. Does anyone out there have an idea?
Have you tried a food diary to see what foods aggravate your system?
 
Write down what you have for breakfast , lunch and dinner. Note if any of these foods send you to the bathroom. My chiropractor usually has me break my diary down into each meal and what I ate including snacks. He also has me write down how many times i went to the bathroom and how firm your stools are.
 
My gastro Dr tells me that about 15% of the Crohn's' patients do not get any major symptoms and apparently I am one of them. Time will tell, but apart from the diarrhea issue, which I will try to minimize/overcome I do not suffer from any other issues.
I see that you take meds. Why do you need to check the food you eat to control diarrhea? Do the meds not control it?
 

scottsma

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

Like scottsma I am also careful about diet. I have Crohn's and Diabetes. Luckily limiting carbs can help with both diseases. I also do not eat many vegtables, because the fiber can cause problems. I take Loperamide 4 capsules a day (my prescription calls for 6 capsules a day but I found I don't need that much). Everyone is so different when it come to controlling the "D".
 
I am new to posting and how it works. This is a good group for me because I was diagnosed with Crohn's after 50 and have tried all the oral drugs, Remicade and am currently on Entyvio. The positive thing is Entyvio has decreased the flares. The bad thing is that now I have constipation which I treated last night with 3 enemas and 3 over the counter stool softeners. It has given me some relief but the morning dry heaves are my best friend, and the pain and nausea are close seconds. I read that insomnia is also a possible side effect and that has entered my world as well.

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

I went to see my GI team last week, the ran blood work to see why I am fatigued and keep telling me my Crohns is not acting typically. I am getting very frustrated with them, either fix this or send me to someone who can.
I agree. If you don't find relief soon, go for a second opinion. Best to you
 

scottsma

Well-known member
Location
Tynemouth,
Hello doglover1 and welcome.There are three things we have in common,dx'd over 50,crohns and doglover. I hope you get something to suit you soon.I hate being constipated,although thankfully it's only occasional.If I had to choose,hahaha,it would be the opposite every time.Best wishes.
 
Hello doglover1 and welcome.There are three things we have in common,dx'd over 50,crohns and doglover. I hope you get something to suit you soon.I hate being constipated,although thankfully it's only occasional.If I had to choose,hahaha,it would be the opposite every time.Best wishes.
Just trivia. I am a dog lover.
 
I am new to posting and how it works. This is a good group for me because I was diagnosed with Crohn's after 50 and have tried all the oral drugs, Remicade and am currently on Entyvio. The positive thing is Entyvio has decreased the flares. The bad thing is that now I have constipation which I treated last night with 3 enemas and 3 over the counter stool softeners. It has given me some relief but the morning dry heaves are my best friend, and the pain and nausea are close seconds. I read that insomnia is also a possible side effect and that has entered my world as well.

I went to see my GI team last week, the ran blood work to see why I am fatigued and keep telling me my Crohns is not acting typically. I am getting very frustrated with them, either fix this or send me to someone who can.
It does sound like Entyvio is working. I wonder if Humira would have less side effects?

I am also a dog lover. :dusty:
 
I didn't join this group because I was diagnosed at 32, but now at 66 and some of the stories I'm reading are familiar and informative.

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

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

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

About retiring, my GI has even suggested changing from Humira, which Medicare only partially covers, to Remicade, which as an infusion is entirely covered. We have always resisted this step while Humira is still working. Does anyone have an opinion on this?
 
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I didn't join this group because I was diagnosed at 32, but now at 66 and some of the stories I'm reading are familiar and informative.

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

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

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

About retiring, my GI has even suggested changing from Humira, which Medicare only partially covers, to Remicade, which as an infusion is entirely covered. We have always resisted this step while Humira is still working. Does anyone have an opinion on this?
I had to retire five years ago because after à resection there was too much stress on my body going to hours on a bus to work and then two hours back home. I don't have Medicare at this point and not looking forward to it. I have BC/BS and only pay five dollars for Humira.
 

scottsma

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

dave13

Forum Monitor
Location
Maine
The fear of not being able to retire is shared by too many with IBD. My bigger fear is not being able to retireandnot being able to continue to work even though I must.
 
I will have my 30th anniversary at work this December. This will make me eligible for full retirement. However, because of medical coverage I will have to work for at least 5 more years. It makes me very stressed. And what happens if I get really sick?
 
I turned 50 in April. I was at work, leading an educational tour of 15+ teenagers in France and Italy. I literally spent my birthday doubled over in pain in a bar in Italy, sipping on ginger ale so I had access to their restrooms. I thought I had "eaten something bad" on the tour and that "things" would get better in a day or two. The last 5 days of the tour were a blur. The flight home - a traumatic nightmare. STILL thought I'd get home, get in my own bed, and this food poisoning thing would go away.

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

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

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

scottsma

Well-known member
Location
Tynemouth,
Welcome Lulu.I'm so sorry you're not getting the support you need from your medical team.I hope you get support from your family and friends,and you don't have to cope on your own.
I know very little about meds.especially USA meds. but I do know that we're started on the lowest / weakest types at first so that if they don't work something stronger can be prescribed.
You're obviously not feeling at all well, so don't take your docs word on how you should be feeling.If you're not happy,then change doctors, if you can.I hope you feel better soon.Welcome once more.
 
Hi Lulu! I hope you start feeling better. Some doctors have no idea what us IBDer's go through. My thoughts and prayers are for you.
 

fuzzy butterfly

Well-known member
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💕💕
 
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