Share Facebook
Crohn's Disease Forum » General IBD Discussion » Diagnosed at age 50 & over Support Group


 
04-01-2014, 01:50 AM   #61
Grumpy1
Senior Member
 
Grumpy1's Avatar
 
Join Date: Mar 2014
Location: Victoria, British Columbia

My Support Groups:
Mike58
Also new here and am hoping that you feel much better soon. I can't imagine heart issues on top of diabetes and crohn's - I'm have difficulty with crohn's alone so you have my complete and total and heartfelt best wishes for a speedy recovery.
04-07-2014, 11:45 AM   #62
crone kh
 
crone kh's Avatar
 
Join Date: Feb 2014

My Support Groups:
Just a note to those who are interested in thinking outside the box about treatments...Try this book and persevere until you get to the good parts.
Can't help it, used to be a librarian <g>
Brain Wars by Mario Beauregard
04-13-2014, 01:46 PM   #63
Mike58
 
Mike58's Avatar
Thanks to everyone for your support. I really do appreciate it.
Well, I ended up in the hospital again 2 weeks ago for a week. I woke up at 2 A.M. to do my thing and started to shake uncontrollably. Went back to bed. Wife felt my foehead and said I was not hot. Shivers until 5:30 that morning so took my temp. 101.6. Then retook it at 6:00 and it went up to 102.3. The oncall doc said to go directly to the ER which we did. Was admitted and the testing began. Heart doc said no problem with my heart on this one. Crohns doc set me up for another MRE. Took almost an hour and a half in that tube. No active crohns was the result. Lung doc did a complete pulmonary function test and came back with a problem they call Small Lung due to Prednisone use.
Out of the hospital now and going in to see the Arthritis doc on Wednesday. Still have chronic D. 8 times per day on average. Will start my cardiac rehab later this month. Will keep you posted.
Thanks again to you all,
Mike
__________________
Crohn's DX October 2012. Ileum and small bowel resection August 2013. On Remicade, Methotrexate, Percocet, Lipitor, Insulin (type 2 diabetes), Metformin, Hypertension meds.
04-15-2014, 06:59 PM   #64
Allison M
Senior Member
Good luck and good health to you, Mike.
Allison
__________________
Diagnosed December 2013
Partial gastrectomy Jan 2012
Cholecystectomy June 2012
Rectal Prolapse Feb 2013 with repair and removal
Pancolitis multiple times before diagnosis
Stricture and resection after prolapse May 2013
Current Meds: Prednisone, probiotics, 2 b/p meds, MV, Zoloft
Past meds: Prednisone, Flagyll and antibiotics (?)

[/SIGPIC]
04-15-2014, 10:02 PM   #65
fozheart
Senior Member
 
fozheart's Avatar
 
Join Date: Jul 2011
Location: Newport News, Virginia

My Support Groups:
Good luck with the arthritis doctor appt tomorrow, Mike! Rheumatologist? You may already know- mamy of the same meds are used for both rheumatoid arthritis, lupus, etc., and crohns. Let is know how it goes!

Carol
04-17-2014, 12:26 PM   #66
Grumpy1
Senior Member
 
Grumpy1's Avatar
 
Join Date: Mar 2014
Location: Victoria, British Columbia

My Support Groups:
Okay, just got my second Remicade treatment....got hives one week after the first treatment and the little buggers are back. Am not impressed. Crohn's is better, itching is intense not sure which is the lesser of two evils right now. Suggestions?
04-17-2014, 08:45 PM   #67
trashoken
 
trashoken's Avatar
 
Join Date: Mar 2014
Location: United Kingdom

My Support Groups:
Okay, just got my second Remicade treatment....got hives one week after the first treatment and the little buggers are back. Am not impressed. Crohn's is better, itching is intense not sure which is the lesser of two evils right now. Suggestions?
For the itching I used Avalon cream as it has a numbing effect and portion an antihistamine, but when it got really bad I used Eurax lotion and Atarax, I got them from the doctor on prescription, I hope this helps you.
04-17-2014, 11:26 PM   #68
Mike58
 
Mike58's Avatar
Carol,
My appointment with the Rheumatologist went well. She took about an hour with me which I thought was unreal for any doctor to spend that much time with a patient. They took blood for the RA test as well as other inflammatory test markers. They also took a series of xrays and even gave me a cd copy to take to my Neurologist. The doc thinks I have IBD related arthritis even if I am in a remission. She is going to call my GI doc and discuss increasing the Remicade dosage which is one way to battle the arthritis.
She is interested in my lower back where my sacroiliac fused. I will see her in 2 weeks with results. I must say, I was very impressed with Dr. Annmarie Whiddon. She is the type of professional we all seek. Finally, something to smile about!
Mike
04-18-2014, 07:04 AM   #69
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
It's great you have something to smile about! A Dr.who is caring as well as competent can really help.I wish it was the norm and not the exception when you find such people.

When I went to the ER(not yet knowing I had a blockage and CD)I was in so much pain.I was scared.The first medical person I dealt with was an ER nurse.She was an angel...very professional and very caring and kind.She shops at the store I work in and she always finds me to see how I am doing.I can't thank her enough.She was very good at her job and still had compassion for the patient.

I just added that to show there are good and caring people out there.I feel these people make our journey go smoother by lessening anxiety and showing compassion.They see us when we are so vulnerable.

I hope things continue to go better for you!
04-22-2014, 02:22 AM   #70
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
I just posted this in the "My Story" section too. I am so new to this. Sooo...Hi there, 55, F, and new to this forum.

Was diagnosed with Ulcerative Colitis on my 53rd birthday, and after last colonoscopy 10.13 was told Crohn's colitis. I have been very blessed my entire life, no illnesses, no health problems, or weight problems at all. Very healthy fit woman.

Prior to taking a plane flight, a person bumped into my mouth and knocked my upper right eyetooth. Upon landing there was a slight pain by my tooth. Stopped by an ER room to have this checked out as I was due to fly again, within 24 hours, and they gave me some pain meds and antibiotic and told me to check in with my dentist when I got home. Flew home, and the next morning woke up with a horrid swollen face, and a 105 fever. 4 weeks of antibiotics (I had only taken them twice before for dental work) and probiotics. The last antibiotic was Levequinn. I lasted two days on that drug, and three days later was diagnosed with Ulcerative Colitis. For 12 months Pain and blood. In 18 months, a total of 11 months of hospital stays. A truly unbelievable experience. I have been on every drug, and was on Prednisone for 10 months. In July of 2013, I had my gall bladder out, my appendix out, and kyphoplasty performed on my L2. By August I had broken L1-L5, and two additional bones in my thorastic region due to Severe Osteoporosis.

I still can't believe it. Its all so overwhelming. I have been in remission since July '13, however have been dealing with the bone issues. I am so incredibly fortunate that as of December 2013, the x-rays shows I am in Osteopenia.

I am on Remicade, 3 probiotics, calcium, and strontium. I am still exhausted. LOL But coming out of the fog, I think. This is taking quite a while to find out what my new normal is. I love my GI, he is my 5th, the others were all fired.

I had a colonoscopy and a dexascan done at 50, thank goodness, to compare, although my colon was horrid. I am in full remission and have even gained 15 lbs, which is great. It was always such a fight to keep weight on as in 12 hours I could loose 7 or 8 pounds.

I am single, have four girls I have raised all on my own (two are still in college) and I work in a stressful industry freelance. As I was packing off my youngest to college, I was filling out my dating profile as a gift to myself for my birthday, and that night was the end of those thoughts.

I am glad to be on this forum, and on this section, over 50 and diagnosed. I feel like I have been Punked soooooo bad. LOL Looking to make some new friends, and share this new normal.

I have been on remicade for almost a year, just got my last infusion on Friday, and still can't get off the couch! LOL

I am also weaning off of oxy's now. I am moving so much better, and in the last month alone have much less pain in my back.
Thank you for taking the time to read this.
04-22-2014, 06:01 AM   #71
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Welcome Maggiesfour

UC diagnosis on your birthday?Talk about a b-day surprise you could do without.I had a resection the Monday before thanksgiving and diagnosed with CD the day after thanksgiving.Timing is everything.

It's great you are in remission.I am currently in (surgical) remission as well.It takes awhile to come to terms with our new normal.The forum is a great place to help with this.Everyone is patient and willing to share there knowledge.

Crohnies helping crohnies!
04-22-2014, 11:14 AM   #72
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
Thanks Dave13. I appreciate the welcome. With your surgical remission, are you on any meds? Gosh, Thanksgiving!!

Does the fear ever go away? I understand, my onset was severe, ridiculously. With in three days of being sick, I had a picc line...and it only got worse from there. I foggily remember one day, early on, a nurse asking me, well, what do you normally for constipation? (they were trying to give me a quick prep) and I looked at her nuts and said, I never had constipation!!

I told me kids, as the second one looked at me and said, So ma...you always said, take care of your body, and your body will take care of you. I said, Well, the good lord decided I had a few more lessons to learn, and he and to look long and hard to pick this disease. (there went my great lesson on staying healthy away from drugs and drinking, lol.) All I am is doped up on drugs, hehe. I never did any drugs in my life.

I am still trying to find out the difference between Crohn's colitis and UC. My DR said since he found four polyps in my lower bowel, its Crohn's. All my brothers and sisters have polyps, but no IBD. I am so confused. LOL The confusion goes great with the brain fog. Thank goodness I have habit to rely on!!

I see you belong to fitness and exercise. That is the one thing I am looking forward to. One of the things that was devastating to me was the severity of my illness at the onset. I was so strong and in such excellent shape, and within weeks became totally atrophied and stayed that way, due to the osteoporosis. I am so fortunate, because my doctors trusted me to not go on any osteo medication. WE fought about it, but they trusted me. The 6MP I was on at the time, caused weeks of vomiting, and one day, as I was vomiting I just started breaking bones. I firmly believe that if fed well, with time my bodies memory will kick in. And it is. In two weeks, I will be able to start gentle exercise with resistant bands. Fortunately I am a walker, but the 30 minute limit, 3 times a week, with no weight, is making me nuts. My recent weight gain of 15 pounds is so exciting, as I know my body is really in remission, but now I look like a short little italian lady!! While i am grateful to be alive, I am now impatient. Also, I am finally going back to work, and I work in a business where, no one will know of my illness, and I need to keep it that way. However, there is no way to explain how I look, but I am sure somehow my humor will kick in and come up with something. I think I may go with something along the lines of ...lounging poolside, being fed peeled grapes and chocolate!

Thanks again dave13.
04-22-2014, 03:08 PM   #73
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Hi Maggiesfour

I take 500mg of Pentasa twice a day and I use cannabis.These are my only meds..

Does the fear ever go away?...yes!! In my opinion.I am still very new to my new normal.I have made my peace with the possibility I could be slammed with something unexpected any day.Knowing something can happen helps me prepare.I could be in remission for twenty years or in the ER tomorrow.

Check out the resources part of the forum.Lots of info to be found.

Go slow with fitness! Take your time and don't over do.I over did my first day home from my resection,wasn't thinking and lifted something I shouldn't have.Hernia!! I had to wait for the resection to heal enough until the inguinal hernia could be tended to.It put me back several weeks recovering from an additional surgery.

'We are all different' is something you will hear a lot.The reason is because it is true.We are all different..and that is what makes the forum a great resource.
04-22-2014, 05:11 PM   #74
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
Thanks Dave13. I am one who has been there and done that with "everything." Including diet, which is why I am on remicade. I even spent three months on total bowel rest. That is what landed me in for remicade. I got it fast and furious...just the way life is for me!! HA!

My fear is not only that it will come back but what is working won't work again. I see this time and time again, on a couple of other boards I am on. (For some reason I only just found this one, and like it!!)

Fortunately, I have been walking regularly for three months. And I will start slow. The fact is, I will never know how my bones are, lol. But I know I am capable of so much more than what they are telling me. If I have any questions, I know who to ask!!

Thank you so much Dave.
04-29-2014, 01:16 PM   #75
Allison M
Senior Member
Hey maggiesfour! I'm new to this too, and 57. You have had one hell of a ride! I hope things go easier for you! Mine has been rough too, but it took 4 years to get diagnosed.
I think we go through ALL the stages...fear, anger, bargaining, etc. I keep telling everyone that acceptance has to be somewhere along the continuum,(I hope, hope, hope)!
I liked Dave's answer too. He is a bright ray of help and hope! I'm going to start biologics next month, and I'm praying that makes a big difference.
Just wanted to say hi to you, dave13, and everybody else! I hope you are having good days!
04-29-2014, 05:06 PM   #76
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
Hi Allison,

I am really lucky, thank you. I cannot imagine what your four years have been like. A huge hug to you. I don't know what the answer is, I just keep getting up every day, and moving forward. If I take too long to think, I become overwhelmed.

I start work in a few weeks. I was sick for a year, and worked mostly from my hospital bed (yes, I am soooo lucky) on disability for a year, and out of work for an additional 6 months. I am starting from $$$$ zero again, and that is a tough pill to swallow.

I am looking forward to happier times. And I can't wait to get off pain meds. This is a battle I never thought I would need to go through. ughhhhh.

This board will be so helpful! Pleasure to meet you Allison. Best of luck to all of us.
04-30-2014, 06:51 AM   #77
Whit
 
Join Date: Nov 2012
Location: Madison, Virginia

My Support Groups:
Hello everyone,
I was diagnosed at age 68 when I hit the emergency room with a partial blockage. This sounds like the group for me. I am currently tapering entocort and have started methotrexate injections which are supposed to dampen the inflammation in the last 4 inches of my small intestine. Hope it works and the side effects aren't too bad. This was prescribed by a very good GI doc after a second visit to the emergency room in December 2013.
I think I've had Crohn's my entire adult life though it wasn't diagnosed until recently. I also think diet is very important since we must also watch for high cholesterol, type 2 diabetes etc.
I am now on a moderate fiber diet with juicing vegetables and fruits. I think you have to have some fiber for normal stools and bowel movements. Normal for us is not the same for the rest of the population out there of course.
I too was mostly healthy until the Crohn's diagnosis and it has taken me two years at least to come to terms with living with a chronic disease. Thanks for starting this group.
Whit
05-04-2014, 08:29 AM   #78
Mike58
 
Mike58's Avatar
With these diseases, I've learned that the only thing you can count on is change. Met with my arthritis doc this past week and the tests they did confirmed IBD Arthropathy. All of my joints are in pain and it is now hard to sit, stand, and walk. She discussed my case with my GI and they took me off the Imuran and put me on Methotrexate injections. It's not bad since I only have to give myself that shot once a week. My Diabetes is still uncontrolled and that doc now has me on a base insulin injection of 17 mls 3 times a day. I feel like a human pin cushion. They also put me on Celebrex for the arthritic pain. Hope it works.
Crohn's seems to be in remission at this time. D is still present. GI doc still can't figure that one out.
Hope everyone is coping,
Mike
05-04-2014, 11:01 AM   #79
Whit
 
Join Date: Nov 2012
Location: Madison, Virginia

My Support Groups:
I agree with you that the methotrexate shots aren't bad. Good luck.
Whit
05-05-2014, 08:13 AM   #80
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
I agree with you,Whit.I may have been diagnosed at 50,but look back and see a pattern that wasn't obvious before.I feel I had CD long before I was diagnosed.

My blockage occurred at the same time I was going through an extremely stressful point in my life.I feel the stress just brought to a head what was already slowly building up.

Change is the only thing we can count on...very true Mike58.Our new normal can be different day by day...hour by hour?I hope you have a smooth stretch soon and it's good to hear you are in remission.

The 25th of this month will be six months since my resection...it has felt a lot longer than that.I was operated on 3 days before Thanksgiving and it seems like years ago.I'm fortunate to be in remission and seem to have a handle on my safe foods and my diet.I try not to give in to the paranoia of wondering when I'll get whacked again by CD.I try to define the line between being vigilant about my new normal and obsessing about it.The lines blur at times.

I know we are all different and I will see how this unfolds for me.I can't imagine a day when I will not have CD in my thoughts.I'll try to be vigilant and not paranoid.

Sorry about the rambling...the 6th month of being in remission is a mile stone for me.I made it six months...hopefully I can say the same thing at one year!

Keep the faith everyone! Dave
05-05-2014, 08:42 AM   #81
Whit
 
Join Date: Nov 2012
Location: Madison, Virginia

My Support Groups:
Dave,
My mental state is the same as yours-wondering when the hammer might fall again. I am lucky that the University of Virginia offers a course called MBSR-Mindfulness Based Stress Reduction- and it is helping me get a handle on the paranoia.
Regards,
Whit
05-24-2014, 02:51 AM   #82
suggi
 
Join Date: Apr 2014
Location: Acton, Massachusetts

My Support Groups:
Hi all - as a newbie not sure if I am doing this correctly. I was diagnosed in 2001 with Crohns after 8 hours of bleeding - just pure blood. Was put on Prednisone for a year with Culturelle and Omega 3 and then on to Librium 5mg and Librax as I had IBS also. The Prednisone made my spine go down to 10.9% below fracture level.

I was in remission for quite a few years and then got a fissure and at age 66 (now 76) also became allergic to rubber so no "scopes" as there is rubber in the bends. I do have some mild Crohns episodes again but nothing major and also now have a rectal prolapse from straining as I try to keep on the constipated side although can go 10x/day often (balls). Diarrehea makes me bleed! My GI doc is retiring and said no one is going to give me Librium and Librax as it is not standard practice. He also is letting me try 1.5 mg of LDN to see if I can tolerate it.

How can I convince a new doctor to let me continue taking Librium and Librax and LDN. I am even afraid once they find out I can't be scoped they will show me the door. My GI doc is 78 and has a dinasaur rigid sigmoidoscopy with no rubber that he does in his office as my Crohns is in the sigmoid part of the colon and every one else just uses the hospital flexible colonoscopy to look inside.

Is there any hope of finding a new GI doc. I am also allergic to all the other IBD meds. In fact, I am allergic to all antibiotics except 2 and many other drugs. I really need advice as I am scared. My doc said I will get worse if taken off the Librium and Librax and my PCP said she would be willing to give them to me short term but I have to find a GI doc as she will not keep prescribing them.

Thanks for any suggestions how to talk to a new doc under the circumstances.
05-24-2014, 05:27 AM   #83
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Welcome to the forum Suggi

Does your current Dr. have any suggestions for a replacement? Have you told him your worries and concerns?

Is traveling an option for you?If a Dr. can be found that is not local,but is someone you trust,are you able to get to another city that is not too far?This is something I have to consider where I live.

Good luck

Dave
05-24-2014, 01:48 PM   #84
suggi
 
Join Date: Apr 2014
Location: Acton, Massachusetts

My Support Groups:
Dave13 - Thanks so much for replying. I wasn't sure I was doing this correctly.

Yes, I have spoken to my retiring doc and he just wants out and does not really seem to care about anything anymore. He has cut his hours down from 5 days/week to 3 days and now to 2 days before leaving end of June. Hard to even get in there.

Really would like to stay in same hospital area but have an appointment with another GI doc a few towns away that got some good reveiws on healthboards and vitals.com but is connected with a hospital that is not that great. I can not go into Boston anymore or I would try one of those doctors. Easy to get around when I was younger but traffic is worse and always construction and I would be a wreck if and when I got there. The train is an option but super expensive and involves a lot of train changes and not good if you have a Crohns problem anyway. That is another reason I like close to home.

Just wondered if anyone had a suggestion how to talk to a new doctor and not sound condisending about wanting to stay on the drugs that are working for me (mostly). Have kept a major setback all these years so really scared.
05-24-2014, 04:25 PM   #85
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Hi Suggi...you are welcome.Helping each other is what the Forum is all about.

If you want my two cents worth about talking to doctors...I jot down questions and concerns in a notebook as they occur.I bring the notebook with me to my Dr. visits.When I am one on one with the Dr. I refer to my notes.I find it helps make the meeting more productive.I try to take advantage of being in the same room with my GI because the opportunity is there.Even if I get a "I'll get back to you" it makes the Dr. aware of a concern.

I am new to CD and am fortunate to have a GI that actually listens.He puts his tablet away and talks with me.I see him in 4 weeks for my next visit.Tomorrow is my six month mark of my resection and being in remission.

You can be assertive without being aggressive.You are not asking about a hangnail...you are seeking needed information and treatment.Let your new Dr. know what has worked,be honest and open.

Patience can be the hardest thing to exercise.There are reasonable times to wait for answers.It is up to us to tactfully remind our Dr.'s offices to pull the thumb out from time to time.

My rambling two cents worth...good luck!
06-04-2014, 04:11 PM   #86
Grumpy1
Senior Member
 
Grumpy1's Avatar
 
Join Date: Mar 2014
Location: Victoria, British Columbia

My Support Groups:
So....just a quick note and question. Tried Remicade - am allergic to it. It caused something called serum sickness - not pretty. My GI is suggesting Humira and I am going through the process to try it although I am pretty nervous at this point. The Imuran caused pancreatitis and caused my gall bladder to become infected and inflamed and then the Remicade and I'm really worried about the Humira - I think the cure is going to kill me.

Anyone have any advice on the Humira and what to do before and after treatment? Would really appreciate info.
06-04-2014, 06:04 PM   #87
LodgeLady
Senior Member
 
LodgeLady's Avatar
 
Join Date: Sep 2013
Location: Westminster, Maryland
So....just a quick note and question. Tried Remicade - am allergic to it. It caused something called serum sickness - not pretty. My GI is suggesting Humira and I am going through the process to try it although I am pretty nervous at this point. The Imuran caused pancreatitis and caused my gall bladder to become infected and inflamed and then the Remicade and I'm really worried about the Humira - I think the cure is going to kill me.

Anyone have any advice on the Humira and what to do before and after treatment? Would really appreciate info.
Hi Grumpy, my short experience with Humira was not good. I had other illnesses going on but I think it immunosuppressed me too much where I got the flu, pneumonia and a whopping asthma attack all at the same time! Spent 3 days on the hospital and a month recouperating. I have not gone back on it although my new specialist may have a different opinion.
__________________

Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

06-10-2014, 08:18 PM   #88
Allison M
Senior Member
I tell you the truth, I quit my chemo, which pisses some people off, but..... Sometimes you have to listen to your self. I am going to a supposedly big time Crohn's doctor tomorrow, and maybe it will be better, but this has been the most haphazard, half-ass plan of care, I've ever seen in my life! And I was a nurse for a looooong time. I am not even taking my records. I want to know if he's willing to make me feel better and GET better, he's thinking about me and knows my case. I've been worried about Vit B-12 because I had little symptoms. Well I didn't sleep for 5 nights and went bat-shit crazy and broke 2 ribs falling down. The lab showed I had almost NO B-12, and I was given mega-dose to take. I slept 16 hours and woke up with a toothache and a pain in my left side. I poop on myself ALL the time, thank GOD no one knows. I'm the skinniest I've ever been and people say "you look great". Normally that would be great, I've always been a chubby girl. But I'm 10 pounds above the weight I was in 2nd grade. Is that right for a 57 y/o woman? I SAY DO WHAT YOUR HEART AND SOUL TELLS YOU. F' Em. You've been keeping yourself alive for at least 50 years. THEN......FIND A GOOD HELPER (doctor) WHO WILL DIRECT YOU, AND ENJOY THE LITTLE THINGS WHEN THEY SHOW UP.
06-11-2014, 05:09 AM   #89
LodgeLady
Senior Member
 
LodgeLady's Avatar
 
Join Date: Sep 2013
Location: Westminster, Maryland
AllisonM love your candor!! I too am seeing a big time Crohns specialist, my appt. is in 3 weeks. I am finding that this disease is one of the worst to accurately diagnose and treat. No treatment is the same, no testing is 100% definitive, no drug seems to work forever. Testing is not always conclusive and ALL results are subjective . What kind of medical plan does that leave us?

I am tired of trying this, trying that , waiting and seeing if any of it works. A lot of this medication is very toxic and I don't like the haphazard way docs just want to throw you on it to see if it works.

I can tell you I will never be on Humira again, I don't care how great it works for some. And no way am I even considering Remicide. All of my research so far shows me that very few gain relief and hardly any can stay on these drugs for very long without building up antibodies.

AllisonM I too worked in the healthcare field, 22 years in Respiratory therapy. I thought I saw it all until I came upon this Crohn's disease.
06-11-2014, 12:23 PM   #90
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
Lodge Lady, I so understand what you are saying. There are two differences with me. First, I walk between Ulcerative Colitis and Crohn's. They say I have Crohn's Colitis. I have 2 polyps in my lower bowel, that had inflammation on them. I have two brothers and two sisters, and they all have polyps, but not inflammation. If I have UC, and everything is inflamed down there wouldn't a polyp be too? The second being, I have never had an issue with my tummy or my bowles. I never even took a laxative, other than for my colonoscopy at 50, which was perfect.

With this,you hit the ground running and fast. I have been through so many doctors, all at the top of their field between UCLA and Cedars Sinai. The reason I stay with my current doctor is because he listens to me, and hears what I have to say, and will take this into consideration with my treatments. I am on remicade, but it saved my life, so I am okay with it. Honestly, starting Vancomycin, and Remicade the same day, and symptoms stopping completely 48 hours later, including fevers, we are not sure if it was not a really bad case of cliff which I had for ten months.

I did have doctors throwing stuff at me, as so many of our tests are false negatives, false positives, and we are all different. Our doctors are not researchers and there are not enough of those to go around. At least hear on the west coast, the GI offices are overwhelmed started with infants going to the elderly. Its nuts. I am just so grateful I, and my family have always eaten well.

Something has to change though. The food industry is out of control I occasionally will drink Almond milk, and Rice Milk as I only do cheeses. I, however, have to still read labels, as I cannot consume carageen. No one should!! One of our markets out here, has a line of "healthy" foods, to try and out beat the local WF's and most of their products have this same ingredient. What??

I admire all of us. We deal with so much. Yes, we know in the over 50 crowd, most have stuff to deal with. This though? Who would have thunk?

Have a good day out there today.
Reply

Crohn's Disease Forum » General IBD Discussion » Diagnosed at age 50 & over Support Group
Thread Tools


All times are GMT -5. The time now is 11:24 PM.
Copyright 2006-2017 Crohnsforum.com