Share Facebook
Crohn's Disease Forum » Diet, Fitness, and Supplements » Crohn's Colitis Support Group


 
01-15-2014, 07:44 PM   #91
Rose
 
Join Date: Jun 2013
Location: New Jersey

My Support Groups:
Carrollco,

Please keep us posted on how Remicade works for you. That is the next option for my 16 year old son diagnosed with crohn's colitis in April 2013. We have been unable to get him in remission for longer than couple months, since he was diagnosed. He is currently on for first time Prednisone (started last week), Methotrexate (6weeks) and added Apriso Monday (even though Asacol HD and Canasa did not help previously, doc still wanted to try Apriso with different release). He still has diarrhea, cant remember last time he had a normal stool, but thank God no blood!!!! Bleeding is the manin issue. He is anemic and Hemoglobin drops super fast. I noticed today he went to bathroom 4 times... and I am nervous because when he was better he only went once/twice a day. Just changed doctors. Lots of top doctor plaques on his wall but how do you truly know who is right and who is wrong when there are so many different approaches to treating the disease. How long did Humira work for you.
01-15-2014, 10:47 PM   #92
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
I will keep you informed. It was a hard decision to make, but when the Crohn's moved into my rectum with fissures etc., I couldn't take the pain and had no choice. I haven't had a normal bowel movement in almost ten years. If I have one, I will be shocked.

__________________
Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
01-27-2014, 04:52 PM   #93
atteberyc
 
atteberyc's Avatar
 
Join Date: Jan 2014
Location: Hurst, Texas

My Support Groups:
Hello Group!

I have had eventful couple of weeks. i had a colonoscpy on monday Jan13th, and was diagnosed with Crohn's disease...i was then admitted in to the hospital from the ER on friday Jan 17th, with extreme abdominal pain, passing alot of blood, dehydration...i was relesaed on tuesday night. They did a CT scan of my intsines and said they were inflamed and infected, they kept me on antibotics and steriods and pain meds the whole time i was there. Now i'm out of the hospital and my biggest problem is my anxiety. Since the hospital i have had to take at least one xanax a day to keep the panic attacks away. Now that they have my stomach under control(somewhat) i'm sticking to white carbs and lean meats...it is so nice not to have to go to the bathroom after every bite of food!

Question: Did anyone else have such severe problems after just being diagnosed? It just all kinda happened at once ( i think thats why my anxiety is out of control)

Cassidy Attebery
Crohn's Colitis
meds: Lialda, Xanax(since hospital visit), Celexa (anxiety meds), Prednisone
01-28-2014, 12:27 PM   #94
long time crohnie
 
long time crohnie's Avatar
 
Join Date: Oct 2012
Location: Waukesha, Wisconsin

My Support Groups:
Hi everyone! I need some feedback please! I have Crohn's, for 25yrs, and have been in remission for the most part of 13 yrs. Unfortunately I had a flare this past fall and was on prednisone for 4 mos. My problem is chronic diarrhea. I haven't had a normal bowel movement in years and I've tried everything!! Any suggestions?
__________________
diagnosed: Crohn's desease 1988, Hiatal hernia, reflux, chronic pain syndrome
surgeries: 2 bowel resections(removed ilium; approx 2 1/2-3ft of small bowel and some of colon) 4-5 rectal fistula repairs; gallbladder and appendix removed
Current medications: Immuran(azathioprine)100mg, nexium 40mg, alprazolam, wellbutrin, lexapro, lomotal, donnatol, monthly B12 injection

In the midst of my first flare in 13yrs
01-28-2014, 07:19 PM   #95
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I wish I had some answers for you. I will pray for you.
01-28-2014, 10:44 PM   #96
Dragonfly72
Senior Member
 
Dragonfly72's Avatar
 
Join Date: Apr 2013
Location: Lee, New Hampshire

My Support Groups:
Long time crohnie, I am sorry you are suffering, can you ask your GI if you can add some fiber, like benefiber, it is a powder and you can mix it with drink or food, may help to bulk up your stools, also please make sure you are having enough to drink, you don't want to get dehydrated!

I would call and see what they say about the benefiber (?sp). That did help me some!
Keep us posted.

Michele xo
01-29-2014, 02:41 PM   #97
long time crohnie
 
long time crohnie's Avatar
 
Join Date: Oct 2012
Location: Waukesha, Wisconsin

My Support Groups:
Thank you for your suggestion re fiber, but fiber and I do not get along. I've tried it before and I get bloated w tons of gas, and then more D. The only thing that ever controlled it was being on narcotic pain meds. Got off all those a year and a half ago and really don't want to go back to that. My GI has mentioned the possibility of taking codine, but he as well as I agree thats our last resort. That's why I asked you all, we are the experts, and I can always find new and different ideas on this site. Please continue to weigh in, it does help!!
01-30-2014, 06:58 PM   #98
long time crohnie
 
long time crohnie's Avatar
 
Join Date: Oct 2012
Location: Waukesha, Wisconsin

My Support Groups:
Spoke w my GI doc today that gave a couple options, taking enticort or lotronox(very expensive). My regular doc suggested a small amount of subutex. Unsure about any of it
02-12-2014, 09:07 AM   #99
mama21princess
Senior Member
 
mama21princess's Avatar
 
Join Date: May 2013
Location: Indiana

My Support Groups:
In May of last year, after my first colonoscopy, I was diagnosed with UC. I had another colonoscopy at the end of November, and had a follow-up appointment with my gastroenterologist yesterday. He told me that based on the biopsies, I have Crohn's colitis. For right now, he is doubling my dose of Lialda, and if that doesn't help the inflammation, I will have to start 6mp. I hate this.
02-12-2014, 01:47 PM   #100
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am sorry. I wish you the best.
02-12-2014, 02:26 PM   #101
JudithC
Senior Member
 
Join Date: May 2011
Location: Maine

My Support Groups:
HI little MAMA....I have crohns colitis......life goes on somehow. Keep your chin up and take your meds. I am on remicade and it took a while to work, then it worked, now not so much, but I'm seeing GI next week and we'll discuss next options. It does get a bit much sometimes, so I do understand what you're feeling, but this forum is amazingly helpful, so just keep coming back. We're here for you.
__________________
Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
02-13-2014, 05:42 AM   #102
CMT
 
CMT's Avatar
 
Join Date: Feb 2014

My Support Groups:
Hi all, new to this group. . I thought having the combo of Crohn's /colitis was unique to me. look forward to learning more from all of you and sharing too.
__________________
Diagnosed in 2010. Chrohns/UC
Current medications-Remicade, Methotrexate,Prolia

Past Medications-Humira,Lialda, Predinisone, Flagyl, Uceris, Rowasa, Miralax and Canasa.
Xifian.

Last edited by CMT; 02-13-2014 at 05:43 AM. Reason: Spelling
02-15-2014, 08:53 AM   #103
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome, CMT

2
02-15-2014, 09:07 AM   #104
mama21princess
Senior Member
 
mama21princess's Avatar
 
Join Date: May 2013
Location: Indiana

My Support Groups:
Thank you for all the support everyone. It is so good to have a place like this to come to.
02-16-2014, 08:12 AM   #105
mummy2gastricboy
 
Join Date: Feb 2014
Location: United Kingdom

My Support Groups:
My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.

Can anyone shed some light please

an I join please? I have posted this as threas and then I saw this!
02-16-2014, 08:44 AM   #106
JudithC
Senior Member
 
Join Date: May 2011
Location: Maine

My Support Groups:
Hello Mummy, of course you can join. We're so sorry to learn of your son's difficulties. My very first thought was that you should most definitely change gastric Doctors. I can't imagine how your poor little boy must feel and you also as his caring mother. Perhaps other parents may chime in here to give you some support. I'm the one with crohns and I'm one of the older sufferers of this disease. Sending healing thoughts and prayers.
02-16-2014, 09:26 AM   #107
mummy2gastricboy
 
Join Date: Feb 2014
Location: United Kingdom

My Support Groups:
Thank you judith.
Hes such a sweet happy little boy and because hes soo happy he confuses everyone. Even when he tells you he has pain.
The dr who put his gastrostomy in will only see him if gp does referral again which je wont as ds already costs him too much. He was transferred to the children's hospital closer aas we were originally travelling 3hours to see the 1st dr. The dr who he now sees is pretty useless. Ive taken him to accident and emergency here too so we could see another gastric dr. But as he is already under a specialist nobody else would do much apart from start him on the mevberine.

I do hope (in the nicest way possible) that someone has had similar experience so we have a guide to work from.
02-25-2014, 06:19 AM   #108
mama21princess
Senior Member
 
mama21princess's Avatar
 
Join Date: May 2013
Location: Indiana

My Support Groups:
Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.
02-25-2014, 09:45 AM   #109
CrohnsChicago
Super Moderator
 
CrohnsChicago's Avatar
 
Join Date: Aug 2012
Location: Chicago, Illinois

My Support Groups:
Good idea getting a new referral for a GI. It takes a while to get appointments with them. Maybe call in and ask to be put on the callback list if a patient cancels and an appointment opened up.

It would be in your best interest in the meantime to visit the ER if your symptoms to not improve or get worse to avoid any complications from medication.

But I also want to point out that you should not suddenly stop medication without first consulting a medical professional.

Feel better soon
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

02-25-2014, 10:39 AM   #110
Angie's Mom
 
Angie's Mom's Avatar
 
Join Date: May 2013
Location: Toronto, Ontario

My Support Groups:
Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.
My gosh, it's like listening to my own story!! I know how frustrated you are! I've been flaring for 1.5 years now an I can't get my current GI on the phone to save my life! My Rhumatologist made me a referral for a second opinion after she found a tumor in my colon that my current GI has yet to address. Unfortunately I have to wait until May 26th for my appointment! I hope all goes well for you.
Best of health to you.
02-25-2014, 03:16 PM   #111
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
Remicade is my miracle drug. One week after my 2nd infusion I had my first normal bm in over 10 years. I am now testing foods and so far so good though my diet is still SCD legal. I did sneak a tablespoon of ice cream and had no problem. I don't eat wheat and do not plan to so I can't report on that. Believe it or not I only have a bm every 3rd day. Kinda freaked me out at first but you would be amazed how quickly you revert to normal. My next infusion is 2 weeks from now then we'll try every 8 weeks. I am having some abdominal pain today. A burning sensation that is uncomfortable. That just started today so I will see how it goes.

02-25-2014, 11:33 PM   #112
CAS
 
Join Date: Feb 2014
Location: Las Vegas, Nevada

My Support Groups:
I am new to this forum or any forum so I am happy to have found it. Reading some of the posts I have decided that I have it rather easy compared to some of you (sorry to say that). In saying that I have been debating on going to the Mayo Clinic because I am not "sold" that my doctor is doing anything to help me. I have been having pains along my left rib cage that goes around to my back for a couple of months and my doctor hasn't given me any suggestions to fix the situation.

It happens with almost anything that I eat (almost 2-3 hours after eating). Exercise seems to help but not all the time. I can't sleep through the night and my energy level has been declining. Does anybody have any suggestions?
02-26-2014, 05:52 AM   #113
mama21princess
Senior Member
 
mama21princess's Avatar
 
Join Date: May 2013
Location: Indiana

My Support Groups:
I finally got a call from the nurse at the GI's office late yesterday afternoon. He wants me to stop the Lialda, and start prednisone. 40 mg for two weeks, then taper 10 mg every week. I hate prednisone. I haven't taken it yet for IBD, but I used to have to take it for my asthma. It gives me such bad heartburn.

CrohnsChicago- I am on the cancellation list, so hopefully something will open up a little sooner.

Angie's Mom-I'm sorry you are having so much trouble with your GI. May 26th? Wow! I guess I should be thankful for an April appointment!
02-26-2014, 10:29 AM   #114
sr877378
 
Join Date: Feb 2014
Location: Kingston, Ontario

My Support Groups:
Hi guys! Name is Sara, 22 from Canada, just diagnosed with CC about three weeks ago, been dealing with symptoms about 7 months, flare up for about 5 months. Been on Flagyl at xmas and now on 6 Mezavant for 2 weeks. I have about a 2 week window (when my midterm exams end) to experiment and try to start healing before my doctor puts me on prednisone. Trying EVERYTHING I can to avoid it! So far on day 10 of SCD diet (mixed reuslts- belly pain and cramps and nausea are next to none now, D about 2x in morning and then very small unhealthy BM couple-few times tapering through day, still passing mucous. but overall BM less frequent) but i wonder if the bit of improvement from the diet is only due to eating such a small amount. Afraid if i increased to normal intake I would be back at square one. Making Rick Simpson oil this weekend as a last shot in the dark! Has anyone tried this or know someone who has? Or anyone experience/success with mezavant or tips for SCD? Glad to have joined your group, rock on guys!
02-28-2014, 02:23 PM   #115
long time crohnie
 
long time crohnie's Avatar
 
Join Date: Oct 2012
Location: Waukesha, Wisconsin

My Support Groups:
Welcome to the Forum Sara! I have found this site to have been a life saver at times! It really helps in so many ways. Be sure you check out all the support groups and gather as much info as you can. Not sure I know what a SCD diet is. We have different jargon here in the US. I think your 6 Mezavant is our 6 MP, and if so, that drug can take longer to work which is most likely why your doc may want you on prednisone to help relieve symptoms faster. I know pred sucks but it works. Hope you feel better soon!!
03-04-2014, 01:21 AM   #116
norcalcrohnie
 
norcalcrohnie's Avatar
 
Join Date: Dec 2013
Location: San Mateo, California

My Support Groups:
Hello fairly new poster here and I have Crohn's Colitis which is affecting the colon. The last colonoscopy I had at the end of December showed inflammation in the colon but my GI said my Intestines looked good at least. I have been on every possible medicine and now trying Stelara to see if it helps me any. If that does not work I am basically out of options.
03-04-2014, 02:44 PM   #117
Hope345
Forum Monitor
 
Hope345's Avatar
My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon. The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C.... have any of you had the same thing happen?
__________________
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
03-08-2014, 10:42 AM   #118
Angie's Mom
 
Angie's Mom's Avatar
 
Join Date: May 2013
Location: Toronto, Ontario

My Support Groups:
My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon. The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C.... have any of you had the same thing happen?
I just had the opposite thing. I've had UC for the last three years with primary disease in the rectum and sigmoid colon. I had a colonoscopy on Wednesday and my condition was changed to Crohns Colitis. I have to wait to see my doctor until after my biopsies come back and I currently have no idea what Crohn's colitis is!
I'm learning that its not about original misdiagnosis, but rather disease progression. Best of luck to your daughter, hopefully they are able to sort everything out for her!
03-08-2014, 11:09 AM   #119
Hope345
Forum Monitor
 
Hope345's Avatar
thank you, you too.
03-10-2014, 04:52 AM   #120
mama21princess
Senior Member
 
mama21princess's Avatar
 
Join Date: May 2013
Location: Indiana

My Support Groups:
So, I've been on 40 mg of prednisone for almost two weeks now. The diarrhea is better, but I am still having so much abdominal pain and cramping. Do you think the prednisone will start to help with the pain? I am so tired of hurting.
Reply

Crohn's Disease Forum » Diet, Fitness, and Supplements » Crohn's Colitis Support Group
Thread Tools


All times are GMT -5. The time now is 02:32 AM.
Copyright 2006-2017 Crohnsforum.com