Diagnosed at age 50 & over Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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

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

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

Truly a journey! Wish you all a healthy 2015
 
RNGirl
My crohns is also in the last section of my ileum. Pentasa doesn't work there as it is more for the colon. My GI doc (a new one I found) laughed and said there were two choices 1) An arthroscopic removal of the swollen section of intestine or 2) trying to reduce the inflammation with chemotherapy using an immuno derpressant called methotrexate. The methotrexate is working though there are side effects.
The operation was a no go anyway since my health insurance wouldn't approve it unless other strategies had been tried and failed and I was near death's door
Good luck
Whit
 
Whit,
Sounds like you have been through the wringer. So sorry, this disease is difficult to say the least. Not a clear cut disease to treat and also seems we all have our challenges with the Gastro docs and their delightful attitudes. Before I switched my GI doc to one 300 miles away, I was pulling my hair out too. The first one was really ticked at me for questioning the meds, telling me diet won't help etc. Well, guess what buddy you lost my business. I also let him know that I didn't appreciate getting put in a "clinical pathway" with meds that don't agree with me just because they are made for a certain part of your intestines. Always be your own advocate. You need to to survive the health care system.
 
RNGirl
Believe it or not, the GI group I first went to here in Charlottesville, VA would only share the results of your blood work (when on methotrexate they have to test you once every two weeks initially) or a colonoscopy via a phone message system. You had to dial there 800 number to get a recording and it would say your last test was ok or not. A real personal touch. I quit them ASAP.
Whit
 
That's unbelievable. It seems there are a larger proportion of unreasonable GI docs out there. Makes me appreciate my fabulous internist. And reason I travel 300 miles across state to see a different GI. My old GI office was like going to a cattle call starting with the receptionist. Makes you want to cry when you finally find a good practice with a caring doctor, nurses and office help.
 
I'm currently 58. I went for a 50 year old colonoscopy screening and they found a lot of inflammation. I felt fine so it was written off as just something out of wack. They scheduled me for another colonoscopy at 55 though. That one also showed inflammation ( actually a little more), they biopsied and it came back positive for Crohns. Since I was still symptom free I refused meds. Last month (at age 58) after a very stressful year, I developed belly pain, night sweats, bloody diarrhea,.....Now they consider me an active Crohns patient. I'm taking Lialda, but am going to try to get them to agree to stop it after a few months and see how i do. I'm also postponing my next colonoscopy till July (instead of April) due to insurance changes. So, I won't know much more for many months. I'm still not accepting this, probably since my symptoms are so minimal. I feel the doctors are trying to scare me and are trying to treat the disease, not the patient!
 
Hi Annlewis,

Your story sounds very similar to mine. Random colonoscopy, inflammation, another colonoscopy 3 years later. My second scope showed no increase in inflammation. I didn't know there were no changes until after I had been started on Entocort and Pentasa. Had I known it had not progressed I would have put off taking the meds. Unfortunately, the Pentasa did a real number on me and I am still trying to rally from the damage it did to my gut. I have minimal GI issues, but I too have been given the full blown Crohns diagnosis. Currently, I've been off all meds for almost 5 months. Managing with diet. Feel like my systemic symptoms reared their head after some very stressful work stuff too. Take care, I know this stuff is rough.
 
Annlewis,
My situation was much the same as you both. I had all the symptoms of something wrong for many years with lots of different doctors coming up with a different diagnosis. Unfortunately I ended up in the emergency room with a partial blockage and Crohn's was considered the problem.
I went on different drugs and had I to do it over I would have accepted the diagnosis as a incurable life threatening disease and started with a diet very low on fiber but nutritious and not taken any drugs. As it is, I got on the drug cycle and am hoping to get off it forever because the side effect of any of these drugs, though different for everyone, are major. Doctors minimize these as due to something else because they never had reports of other patients with these side effects but I know different.
The cure can be worse than the disease. I think eating well is best. I visited a licensed nutritionist and she has been a huge help.
Good luck,
Whit
 
Seems like the common thread is weird symptoms for many years then a random colonoscopy after the age of 50 that indicates Crohns. Some GI docs get very aggressive with the meds to just get us out of their hair. There is no mention of trying to find the root cause, just give you a med to put a bandage on the symptoms. I take an all natural women's vitamin and 5000 mg D3. Doing the auto immune Paleo diet and adding almond flour, pure maple syrup (for a Paleo chocolate chip cookie I make-very good) a splash of organic honey to herbal tea in the morning. I seem to be holding my own at the moment without toxic chemicals. Started trying to use soaps, make-up etc that are as chemical free as possible. Hopefully, all of this clean living will help heal my body 😊
 
Hi, I am also recently diagnosed after a screening colonscopy and am trying management with SCD. I am sorry that a few of you haven't found a sympathetic GI, mine is lovely- he is a friend that I went through med school with 30 years ago but all his patients think he is sweet and gentle. When he rang with my biospy result and I mentioned diet he suggested giving it go for 3 months first. He wants me to achieve mucosal healing and that may eventually require medications. Time will tell.
SCD seems to agree with me but have had a look at the paleo immune diet and may try it if SCD not successful in inducing remission.
UMass have an ongoing trial IBD-AID (anti inflammatory diet) this may help diet influence in Crohn's go mainstream.
Best wishes :)
 
Hi Freddie,

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

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

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

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

Cheers,

Toby

---------
9 MG Entocort / day
B12 Supplement
 
Last edited:
Flatblackdog,

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

RNGirl
 
I am new to all this, was just diagnosed with Crohn's at age 70 (really, I am only 39). Am on Lialda and Prednisone . Had an endoscopy/colonoscopy 7 years ago and all was well. Phooey. Learning to eat differently and taking LOTS of vitamins and minerals and water! I miss celery! Of all things. Those nice crisp crunches. Supposedly have mild to moderate case.
 
Welcome Marlena,we're a great bunch of people on this forum,so although I'm sorry you have to be here at all,I'm glad you found us and I hope you stay and make lots of friends who will offer lots of support and advice. And coincidentally,I'm also 39yrs old.(19 really)
 
If you sense a flare coming, is there anything you can do to avoid it? I really don't want to hit the hospital again. My husband is in early stage Alzheimer's and really shouldn't be left alone. I think I get some blockages, as I start feeling full a lot and then comes the severely distended tummy, pain, diarrhea and if I can just throw up, all begins to be better. The pain is awful and usually my potassium goes through the floor and I wind up on that awful tasting Flagyl. Talk about an appetite killer!
 
Marlena said:
If you sense a flare coming, is there anything you can do to avoid it? I really don't want to hit the hospital again. My husband is in early stage Alzheimer's and really shouldn't be left alone. I think I get some blockages, as I start feeling full a lot and then comes the severely distended tummy, pain, diarrhea and if I can just throw up, all begins to be better. The pain is awful and usually my potassium goes through the floor and I wind up on that awful tasting Flagyl. Talk about an appetite killer!
Click to expand...

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

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

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

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

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

regards, Freddie
 
At the moment I'm on the low residue diet. and due to a lot of stressful things in my life all at once, I am not making any major shifts in diet, but I am reading about Paleo, SCD and others. I did start juicing in order to get more veggies in. Eating lots of yogurt and I drink tea, which has a lot of good stuff in it. Both peppermint and ginger tisanes are really good.
 
Last edited:
I need to vent about changing our diets. I have really changed the foods I eat. Lactose free,gluten free, low fiber, low sugar. Honestly I am tired of it all. All of the changes help but do not get rid of my symptoms. Sometimes I say the h&ll with it and eat it anyway. Sometimes I pay for it sometimes not.
 
LodgeLady,

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

Anyone else struggling with an "undiagnosed" histamine intolerance? Sounds like it is quite common with crohns.
 
What I decided after two visits to the ER with blockages was to meet with a nutritionist associated with the hospital and it was the best decision I every made.
It seems that Crohn's in the small intestine creates a mucosal inflamation around the inner lining and reduces the amount of vitamins and minerals that can be absorbed and, if you have a flare, the mucosal inflammation increases until you get a partial blockage or even full in some circumstances. You can, apparently, get a flare regardless of what you eat but you can get a blockage because you may eat the wrong foods.
Some foods that might increase the chances of a blockage are corn and brocolli and nuts etc and some foods that might cause a flare, at least for me, are alcohol, peppers and foods high in fat. Also, eating too much at once can get me in trouble.
My nutritionist gave me a list of foods that I could eat that were low fiber and healthy including all kinds of potatoes and pasta and pointed out that the most easily digestible flesh was fish then poultry and then red meat and on and on.
So that is what I have been doing along with juicing, because I think with juicing the vitamins and minerals that travel through your system have the best chance of being absorbed through the mucosal coating.
I looked into all the diets (Paleo etc) and instead continued carefully eating. I did find a book a like a lot "What to Eat with IBD-A comprehensive nutrition and recipe guide for crohn's disease and ulcerative colitis by Tracie Dalessandro who is a nutritionist.
I am doing very well on a maintenace dose of methotrexate, a chemotherapy drug that doesn't appear to have too many side effects, and I think for me that is what is helping keep any more flares at bay and me out of the hospital. Eating properly, however, is a must to keep from triggering an unwanted flare.
So my attitude is to forget the diets and eat those things you like and occassionally if you have to eat something that you crave but you know can cause a flare make sure it is a small amount. I buy a small bag of fritos, eat a few handfuls, and throw the rest away.
Anyone who wants me to send them a list of the foods from my nutritionist let me know and I will be glad to
Whit
 
Hey guys, just caught up with the thread and diet is a big issue. Was diagnosed with acute Crohns in November 2013. Still picking my way through the minefield. Marlena, welcome to the forum, it's funny the things you miss mine is apples and celery and salads.
Since November 2013 I have basically been on a fibre free diet except for 3 months in 2014 when they thought they had this under control (not). So Meats, Dairy and rice and some pasta has been my diet, luckily have no issue with dairy. Started MTX in October and just got the go ahead to add cooked to death veges back to my diet late in January (no corn) can have potatoes no skin. Fish and eggs were my original trigger foods and I have eaten fish since I was put on medication but eggs are still giving me grief - not sure why. I have to admit I am getting sick of Chicken
 
Grumpy1,
All the same with me except eggs are OK and I eat a lot of egg dishes. I peel everything and I miss blueberries a lot. Veggies in the frozen food section work for me because they cook up quickly. When I am in my last stages of life I'll ask for popcorn which may put me over the edge. We don't go to the movies as much anymore because that popcorn fragrance drives me crazy.
I hope the MTX works for you as well as it has for me.
Good luck to all and again I think creating your own diet works best because things can change quickly.
Whit
P.S.-When we go out to dinner with friends I will often not order a main dish and just eat off everyone else's plate especially since the portions are so large and they don't mind sharing. That way I don't have to eat much and can choose those things that work for me. Interestingly we have started to choose restaurants with food that is better for everyone.
 
Whit, popcorn = torture. I still go to movies but I eat dinner before I go and then I don't mind so much. But I do love popcorn. I got popcorn (chocolate covered with almonds and pecans for Christmas Harry and Davids) talk about cruel.
So far learning what I can and can't eat has been an adventure. Take care.
 
OOOOOOOOOOH, popcorn, one of my favorite foods in the world. Weep, moan, sob, I miss you so. I have been trying popcorn flavored mini-rice cakes and they are sort of okay, but then again.... I agree about the diet, I just pick my way through. Too much tomato sauce (Italian husband) is death, as is too much fat or just too much food. I'd really like it if we could all have a set of instructions that worked for everyone. LOL
I just started with a nutritionist and she's great. Helpful and not judgemental. Good luck to you all, M
 
Marlena, have you tried Rice crisps instead of rice cakes? No fiber and pretty good. Have in Canada at least in AB and BC not sure if available in US though. My favorite is sesame flavored or original is good too! Low calorie as well great snack food
 
The ones I get are by Quaker and have 1 gram of fiber for 13 mini-cakes. Since I usually only have about 4, i think I'm safe and so far, they don't bother me. And they have crunch! I don't think I've seen Rice crisps, but I am going to the health food store tomorrow and they may have them, thanks for the thought, M
 
I'm hoping this is still an active support group. I see that the most recent post is a year old. MLITS, I'm also in the Salt Lake area.
After 44 years of illness I have finally been given a diagnosis. I sure don't want this crummy disease but it is better to know for certain than to continually be under-treated, and getting sicker...now I have a superb physician and we can get on with getting this thing treated. I'm wondering which is safer; remicade or Humira? Both frighten me.
 
I posted yesterday, so it is is active. I can't help you about the meds, as I have no experience, but others here do and there is a group for both of those meds, just do a search and you'll find them - best of luck to you.
 
Speaking of rice cakes etc why not try the old childhood rice crispy treats found on the bag of mini-marshmallow. My nutritionist suggested this for snacks and a little fiber.
Whit
 
Have been making them like crazy. I love them!, thanks for the suggestion, though - I'm sure these would be good for lots of folks.
 
You are all hilarious! Thank you daring to share the nitty gritty of this "lovely" disease. I've suffered with this gruesome condition since the age of 15 but I wasn't officially diagnosed until a month ago. Now I'm 59!
Eh...what are you gonna do?? Of course I followed the usual path...doctors saying IBS, carcinoid tumor, polyps...geez, how did I get so broken? Three months ago I was still running 5 to 6 miles per day. Now I'm lucky to run to the bathroom! Even my brain feels run down now. Does everyone suffer excruciating fatigue with this like I do?
I can't retire for 2.5 years yet. I sure hope I can make it that long.
It is a blessing to me to hear your stories. Somehow we'll all make it through this.
Bless all of you!
 
Yesterday I went to bed at 7 pm - and I pushed myself to stay up that long. I am on Prednisone and it keeps me awake and like the energizer bunny, but underneath I am so tired I hardly know what to do.. Last night, I actually did get a pretty good night''s sleep.

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

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

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

regards, Freddie
 
I read that Crohn's can also cause neuropathy. I've chronically suffered from B12 deficiency, iron deficiency, and peripheral neuropathy in my hands and feet. It seems like I finally have an explanation for it! I've been on iron infusions and B12 shots for 21 years. It seems incredible to me that some of us go for so many years before being diagnosed. Meanwhile, we edge a little closer to having cancer. Have any of you suffered from skin breakdowns like the photos I've seen? One more question; do any of you have a flare after having had a colonoscopy? I always seem to feel much worse afterward, and usually for a couple of months or more.
 
Awaiting MRI results.Prior to MRI, was on Prednisolone for 4wks,during which time a flare began.MRI was for small bowel but I believe flare is from large bowel as lots of bright red blood and small clots during first BM every morning.Was dx,d with proctitis originally with same symptoms.Do you think inflammation in large bowel will show on MRI ?

MRI was because inflammation in splenic flexure spotted with colonoscopy,also calpro level was 300.Putting off going to Doc.until I get results.
 
Diagnosed with Crohn's six months ago and just found this forum. I'll read and learn from all of you. Anyone else have trouble sleeping? I'm exhausted most of the time but still can't sleep. Anyone use sleep aids?
 
Sleep, what's that? I use a combo of Benedryl and melatonin and that helps with the least amount of side effects. Some people get whizzed up on benadryl, so you need to see. I only take a half.
 
How appropriate you bring this up as I laid in bed half the night with my eyes wide open. Finally took a fourth of a benadryl and one gabapenten (melatonin) and got a little shut eye. I think with being older and having the usual old age sleep problems and the drugs we are on that sleeping is tough and it makes it really rough if you have to work.
Anyway, the best sleep aids for me are benadryl and melatonin.
Good luck
Whit
 
Sleep is the wish of all steroid users I think. I tried Melatonin and it worked great the first night and the second night I was wide awake staring at the ceiling so....I didn't take it again. Went back to old faithful a cup of really hot milk not scientific but if I grab 4 - 5 hours a night I can function and not snap some poor unsuspecting fools head off of his/her shoulders.
Rice crispy squares are right up there on my favorite list but not a big sweet fan more salty - having trouble finding salty things I can eat without spending a great deal of time in the b/r. Also the weight gain from being on steroids for 15 months is a little concerning so I probably shouldn't eat either but seriously chicken is getting to be on my least favorite list even though I have the least difficulty after eating it
 
I agree that sometime gabapentin keeps me awake too but sometimes so does benadryl. Warm milk and lots of exercise is the best recipe for sleep I guess. I too have trouble with a desire for salt and you are right-fried chicken gets me for two or three days after I eat it-even one small leg.
Whit
 
I find the combo works for me for about 4 hours and then I take some more and sometimes I almost get 6-7 hours of wakeful sleep, that is, i am trying to go back to sleep. I used to have little naps in the day time 20 min or so, But they are, alas, gone.
 
I had my first obstruction on my 52nd birthday! What a shock! I had been healthy all my life. Doctors called it a fluke. Three years later, I had 5 obstructions in less than a year and I was sent to the Mayo Clinic in Jacksonville. They finally diagnosed me with Crohn's and told me it was "bimodal" - occurring in the early 20's and later in the +50's. My older sister suffered for many years with Crohn's and passed away at age 44 from sepsis due to a bowel perforation. Needless to say, I was/am not thrilled with the diagnosis. I've been on Pentasa, Prednisone, Entocort, and now Humira. GI would like me to start Remicade infusions, but I am frightened. Anyone with advice for me?
 
Peluchde, I'm so sorry that you're going through so much! I'm 59, just FINALLY got diagnosed about a month ago and I'm about to start on Humira. I'm with you...I'm frightened. Do you have any trouble taking the Humira? My Gastro, whom I deeply appreciate, said that Crohn's usually gets better with age. So far I haven't found that to be true. I'm in a bad flare right now and I don't dare eat anything. Even the smallest about of food will make me blow up like I'm 8 months pregnant. At my age??? It's very hard to go to work feeling like this. I don't want to have this hideous condition either but it's nice to finally have an understanding of why I have been feeling so bad.
 
Hey, I'm 70 and just got diagnosed - 7 yrs ago I had and endoscopy colonoscopy and was clear. Weird. This is a great support group, we all know and care. I had a hernia repair about then with some twisted bowel, tight by my belly button. At themoment, all is well, but you both are in my prayers.
 
peluchde said:
I had my first obstruction on my 52nd birthday! What a shock! I had been healthy all my life. Doctors called it a fluke. Three years later, I had 5 obstructions in less than a year and I was sent to the Mayo Clinic in Jacksonville. They finally diagnosed me with Crohn's and told me it was "bimodal" - occurring in the early 20's and later in the +50's. My older sister suffered for many years with Crohn's and passed away at age 44 from sepsis due to a bowel perforation. Needless to say, I was/am not thrilled with the diagnosis. I've been on Pentasa, Prednisone, Entocort, and now Humira. GI would like me to start Remicade infusions, but I am frightened. Anyone with advice for me?
Click to expand...

Peluchde, welcome and I'm really sorry that you are in the situation that you are in. As for Remicade I couldn't take it unfortunately but the first 3 infusions that I took really worked for me. You might try the remicade support group on the forum you will get some great advice there - there are a lot of long time remicade users that post. It isn't any worse than the humira it just takes a little longer to get into you. Good luck and keep us posted on your journey. Thinking positive thoughts for you.
 
Thank you for your nice response. If you don't mind me asking, can you tell me why you couldn't continue the Remicade. I have heard of so many problems. My veins are small and they "roll" or so I've been told. right now, I'm going on Day 21 with a pillcam stuck in my small intestine. My GI ordered another colonoscopy prep for tonight, but as it is after 8PM right now and I have to be up at 5AM, I'm putting it off until tomorrow. This will be the 4th prep I've had since all of this started. I've got such anxiety😞 thank you for your kindness.
 
Anxiety is par for the course. I took a great 8 week class in mindfulness based stress reduction and have viewed a lot of DVD's on the same subject. As a result I meditate every day and my stress and anxiety levels have gone down a lot.
Where exactly have the obstructions been located?
Good luck,
Whit
 
Very happy I found this group. I was diagnosed at 77 and my doc said I was the biggest surprise of his career. Not very pleasant for me as he is a gasto prof at the university, had me feeling very odd.

I am very active, always have been and I will deal with this one way or another. Have had lots to deal with before and I don't plan to let this get me cornered.
 
Good for you, Terri, attitude really helps. I have always been healthy but suddenly I've been hit with a bunch of biggies - hernia repairs that didn't work, detached retinas, cancer and now this. But never give up and don't let the bugger win! That said, my heart goes out to long term sufferers.
 
Terri311 said:
Very happy I found this group. I was diagnosed at 77 and my doc said I was the biggest surprise of his career. Not very pleasant for me as he is a gasto prof at the university, had me feeling very odd.

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

Welcome to the forum Terri.

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

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

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

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

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

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

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

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

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

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

This is all new to me, I am so tired of thinking and dealing with my body. Anyone have any advice on this as I am not at all dealing with this too well.
 
Entocort was a big help to me, but being a steroid I had to wean off it and my symptoms came back and I lost 7 pounds which makes me look anorexic. So now I am on mercaptopurine, but it takes time to take affect. I am on a VERY limited diet as most foods cause me pain. I'm surprised the veggies bothered you. Were they cooked well? Did you eat slowly, chewing well? I've had to get a new wardrobe too, but shop at used clothing places. And I am happy not to have so many clothes.
 
Cooked well and chewed well, I know it is strange but I think I am dealing with a 'residue' & fiber problem also.

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

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

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

I shop in similar places Gail, luckily I can sew well and have fixed some of my jeans.
 
Terri311, have you tried any specific diet? I have: FODMAP and now Crohns Pain Free Foods, both of which I found on the web. I use both together. I used FODMAP first and it helped but not enough. With the Crohns I seem to be doing better, but have only used it correctly for 10 days. I ate some totally wrong foods 3 times: nuts, peppermint tea, and yesterday processed st potato chips and paid for each with several days of pain. I see a nutritionist (my dr's command) on Monday and am curious as to what she will say.....
 
Hey guys & gals....
I was diagnosed in 2007 at the age of 66.... I had symptoms all my life but the diagnosis came very late... at 40 was hospitalized for 7 days with a naso tube because of extreme cramps but no diagnosis then.... in 2007 the gastro had the correct tests done and the diagnosis was crohns AND IBS. I now cannot consume anything with fiber OR anything with hardness... potato chips are hard and NG.... anything with fiber is NG... I live on eggs and poultry.... certains spices cause terrible cramps... certain foods work well one day but are terrible days later! the illness is unpredictable.. I found that mercatapurine [6MP] to be a svior along with Pentasa and Prilosec.... if I am careful problems are kept to a minimum... btw, eating out is always and experience in pain/cramps/and of course D..... careful food selection can make this illness go into almost remission..... GOOD LUCK:ymad::ymad::(:(
 
Hi all,
I am curious about where each of you is experiencing Crohns. My inflammations are in the last four inches of the terminal ileum and in the mouth. I do get some negative digestive symptoms when I eat the wrong foods but not like you all are experiencing. My main concern is the wrong foods or too much fiber causing a blockage again.
So again, where is your Crohns?
I hope we can all find foods that work.
Best
Whit
 
I have been told it is in the terminal ileum. I too get bowel obstructions. Afraid to do solids. I have been mostly on soft foods, melt in your mouth cheeses, and liquids/smoothies.
 
good question. I only know my ulcers are/were in the small intestine. I will have to inquire next dr visit. I also have a lot of stomach pain. Anyone else?
 
I did have a lot of stomach pain, but after taking probiotics my pain has mostly subsided. Ulcers in small intestine, the frequency comes and goes from 7+ times a day to not at all. The pain and frequency do not seem to be linked.

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

If I hurt I try something different, if I run to the bathroom a lot I eat differently. So far my comfort food seems to be rice. Go figure.
 
My pain is mainly on the right side - ileum area, side by hip and below breast area. Some days I also have pains and pressure in stomach -gas in stomach. Most pains are caused from the narrowing in ileum from scar tissue. The pains are worse now and my Humira isn't helping enough because it is not just inflammation now, but mostly scar tissue. I am seeing a surgeon in a couple of weeks to schedule surgery. It is a tough decision but I have been putting up with this for over a year. Not long compared to others I know. But too long for me.
 
Hi people, very new to this so any advice gratefully received , was diagnosed 6 months ago with crohns and recto vaginal fistula. Bad reactions d and v , to 6 mp and azathiripine,prednisolone hospitalised for a month. started on infliximab and had anaphylaxis after 4th infusion , never had any improvement in symptoms and now running fever as well. Doc wants me on anti biotics and steroids again , despite previous reactions to prednisolone , :blush: spent many years with what I thought was ibs . Just had 52nd birthday and wondering if I will ever feel normal again :sign0085:
 
Sorry I'm not the one to give you advice Jude, but I just wanted to welcome you to the family,and offer my support.Someone will be along soon who understands your particular situation,and can help.Best wishes.
 
I'm so sorry you are struggling with all of these issues. I pray things start to turn around for you. Hate this disease. Sending you my support🙏🏻
 
Diver jude said:
Hi people, very new to this so any advice gratefully received , was diagnosed 6 months ago with crohns and recto vaginal fistula. Bad reactions d and v , to 6 mp and azathiripine,prednisolone hospitalised for a month. started on infliximab and had anaphylaxis after 4th infusion , never had any improvement in symptoms and now running fever as well. Doc wants me on anti biotics and steroids again , despite previous reactions to prednisolone , :blush: spent many years with what I thought was ibs . Just had 52nd birthday and wondering if I will ever feel normal again :sign0085:
Click to expand...

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

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

Also, have you tried another biologic like Humira?

I hope things start working better for you. Get well soon.
 
Hey Jude, I am trying to accept the fact I will never be normal again. A lot of people are in our boat but that does not make me feel better. I want to agree with DougUte that Endecort is a much better steroid for Crohn's. The side effects are MUCH less and it has helped me greatly. The problem is one cannot be on a steroid forever...or for very long so your dr. will have to keep you trying different medicines, but there is a lot of possibilities so don't let him give up. Be persistent!
 
Hi all, just a query , but after having anaphylaxis after my fourth infliximab infusion, I was taken of it and started on prednisolone for next 8 weeks starting on 40 and weaning down 5 a week, but in have been feeling very nauseous and dizzy , horrendous diorrea , and bizarrely tingling like nettle rash in tips of fingers and toes, which have now been peeling for a week and cracking despite moisturising etc . What's going on ??m
 
Aren't we having fun? This week has been one of flare-up. I just can't seem to get rid
of gut pain. Today has been horrible. It is my 10th week of Remicade and a year of Endicort, but for some reason neither are making a difference! To share your phrase,
"What's going on?" We are supposed to live in the present but I am waiting for the future when my pain is gone! I have no idea why your prednisone's side effects are as they are but I know prednisone is a very powerful drug....and side effects are to be expected. There must be many reading this who have been on prednisone. What say you? I hope you told your doctor.
 
Hey Jude( scuse me, couldn't resist). Wonder if you need a second opinion? This is the crappiest disease.
 
So after speaking to my crohns nurse , an appointment is scheduled with the surgeons re my recto vaginal fistula, so maybe that's the way forward because the drugs just seem to make things worse with all the side effects , what a bizarre condition this is , it doesn't play by the rules lol
 
Feel better today, but I am eating hardly anything and I look anorexic and feel tired but at least I am not in pain. Called my dr but no one called me back. I think I need another Remicade infusion, even though it is 4 weeks too early. Anyone else need Remicade more than every 8 weeks?
 
Having a minor (hopefully) flare.Started with blood,pain and nausea yesterday.No blood today, but a niggling pain in front of left hip.I've been very fortunate until this year,now things seem to be changing gradually.I'm waiting for Gall bladder removal, due to polyps.
It's been almost 3 months now,so may be imminent hahaha.I hope you're all feeling a wee bit better today.
 
Hi! I'm not new to the forum but new to the group! I was officially diagnosed last summer just before turning 50! So hopefully that's ok? I've had major issues for years...several small bowel obstructions, and 5 resection surgeries and a temporary ileostomy that was reversed several years ago! Had been living undiagnosed for about 15 years due to pathology reports been lost! So when I developed a GI bleed last year it sent me searching for answers that the docs here could not provide! So off to MGH I went to search for answers from their IBD clinic. In the process of having records transferred I realized that pathology reports from 2000 were missing. I had 6 inches of small bowel and 12 inches of colon removed @ that time with a temp ileostomy. So finally I was able to locate those all important records that had been archived/misplaced @ a local hospital. Those records did indicate CD which I obv could not confirm each time I went for a 2nd opinion! MGH confirmed CD through a colonoscopy and started me on Enticort and humira....tapered off of Entocort and am doing bimonthly Humira injections. Feeling better than I have in years including more energy, fewer symptoms etc. def many more good days @ this point in my life than bad!
 
i am 69 years old and i had suegery .i am on cimzia .and i am married with one daughter.I mam afraid of her getting crohns. i am interested inanyone with similar problems to share emails [email protected]
 
Hi Scottsma, remember me 😊 Sorry you're having problems.
I was diagnosed with ulcerative colitis last June, but last week, after seeing the proper consultant rather than a registrar or locum at the hospital, it has been decided I have crohns. I'm six weeks into a flare up, the first I've had since it all settled down last autumn, and am now on an eight week course of steroids, and azathioprine. Oh and B12 injections every other day for two weeks.
A question....does this disease behave differently in us older folk in terms of being more rapid in progression and severity, or less so because our bodies have slowed down?
Bounty x
 
Hello Bunty,yes of course I remember you.......I'm sorry your having a flare,but hopefully the steroids will clear the inflammation and get you back on track.As to your question about it behaving differently as we get older,I really can't say.But I am VERY grateful that it didn't rear it's ugly head earlier.There are far too many crohnies who are just starting out on lifes journey,who have so many problems.I have been fortunate in that,apart from regular (manageable)fares since dx 9yrs ago,It hasn't interfered with my life too much.Recent tests showed a progression from Proctitis to Crohns Colitis but all's well for now.Except of course,during tests they discovered Gall bladder polyps,for which I have a pre op. assessment next month.I hope your set back hasn't stopped you from enjoying time away in your caravan.Get better soon.
 
Hi Scottsma, very nice to hear back from you so quickly 😊
Have you had a change in your meds to treat your new diagnosis?
They've discovered I have gallstones too, maybe it's an age thing! 😉 Oh, and kidney stones as well. Never ending is it??
We were hopeful that this year we'd use the caravan a lot more than last but, so far that's not been the case, it'll probably be another few weeks before we can get there again due to B12 injections and weekly blood tests.
I agree with you, I really do feel for those youngsters to have to deal with all this.
Bunty x
 
No my meds haven't changed,my choice.I feel I can manage ok for now.
But I am constantly aware of little twinges and other signs,that I might be in trouble.
I think we on the Forum all do that though.Gone are the days when we could take our health for granted eh? How long have you been on the steroids and are you having any side effects ?
 
Been taking them since last Wednesday, only hot flushes so far, but having taken three months of them last year I know the side effects ramp up after a while...not pleasant but needs must.
The other delightful thing is I've developed a huge pile due to using a steroid foam enema (which didn't do a thing), never had a pile in my life till this thing appeared. Am just considering a GP visit as germaloids cream isn't working. Have you suffered? Any suggestions??
Bunty x
 
Just one small one,but not much trouble.EXCEPT...while prepping prior to a colonoscopy.
Oh my goodness !!!!! Preperation H might work for you,and if it doesn't work on your hemmy,I've heard it does wonders for eye bags,if you have them as well, of course.hahaha
Some celebs use it to tighten up.Whisked egg white works as well,but not on your piles
 
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
 

Similar threads

W
Entyvio & Rinvoq Combo
Replies
10
Views
483
Domino300
D
A
Loop ileostomy, active disease + rectal discharge
Replies
6
Views
1K
Nadia96
N
N
Loose stool 6-months post-op and diet questions
Replies
0
Views
525
NeverBeenEasier
N
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O
K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M

Latest posts

Back
Top