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


 
07-01-2013, 12:45 AM   #61
Hope345
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Carneysh,

just sending lots of support your way too. I hope you find the information you are needing at this time. I am sorry to hear all that you are going through again!!
did they originally diagnose you with IBD back in 98?

Check out the surgery section and see if you can get some of your questions answered.
I wish you the best.
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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
07-01-2013, 05:11 AM   #62
Carneysh
 
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Julie,
Thank you. I hope your daughter continues to be in remission. Yea for her!!!

I'll continue to learn all I can so I can beat this back and continue on. I'm glad I found this forum though (completely by accident) because a lot of people I've talked with (other than those in the medical field) don't even know what Crohn's Disease is and they really don't know what it means not to have a colon at all other than to ask 'do you have a bag?'. It is good to read the success stories and what works/what doesn't.

I'll put your daughter in my prayers that she can continue to dance for a lifetime!!!

Regards,
Debra
09-11-2013, 11:09 AM   #63
Angie's Mom
 
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Hi, I'm just wondering if there are many of you also suffering from arthritis. My GI is sending me to a rheumatologist for sever joint pain and I'm really nervous about it. Any one else suffering from arthritis? If so, what types of arthritis?
09-11-2013, 11:42 AM   #64
JudithC
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Oh yeah!!!!! At least your GI is listening to your complaints and trying to help you. Mine just goes Hmmmm. Arthritis is another auto immune disease, and seems to go hand in hand in either Crohns or the meds we're taking. Go to the rheumy and see what he has to say. Oh, by the way, I'm pretty sure it is rheumatoid arthritis.
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Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
09-11-2013, 12:03 PM   #65
Carneysh
 
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Yes, I have arthritis too. Had my bilateral knee surgery in. 2010, best thing I ever did. I don't hurt there anymore. My hips and back I think I have arthritis in but I have put that on the back burner for now. I'm going back to GI in two weeks to find out if I'll have to go to a surgeon for the Crohn's. I'm praying I won't have to but the pain level is at a 7 to 8 right now for the Crohn's
Don't be worried about going to the rheumatologist the faster you get the pain under control the better you will feel and then you can follow an arthritis diet to help you. I found that if I stick to non-red meats the pain lessens. Mine so far is osteoarthritis. No medicine really I just kind of live with the pain and lessen it with diet.
09-25-2013, 08:54 PM   #66
Elektrikhd
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Hi- Just subscribed to this support group. Got diagnosed a little over a year ago, as a result of a flare putting me in the hospital for 19 days. Crohns, pan-colitis. Just had a colonoscopy a couple of days ago, and I'm in good shape. Still some symptoms, but for the most part it's pretty mild: I can live with it like this. I take Humira and Asacol to keep it under control, and a fistful of supplements to make up for deficiencies.

Right now I'm mostly just frustrated with being tired. I still work and do other things, but I often wind up feeling like I can't do anything for the lack of energy.

I also have had the somewhat puzzling change since the Crohn's started of my balance not being as good as it used to be. I doubt it's noticeable to anyone else, but I can feel the difference.
09-26-2013, 01:03 AM   #67
Beno
 
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Did you have much pain in gut I was Diagnosed in 2003 and symptoms came back last year after a colonoscopy My symptoms are mild only go to toilet in morning am once! I`m on Pentasa but on 2 grms a day I was on 4 grms but made no difference.I`m being now tested for blastocytis which is like giardia. I feel very nauseas. I have not missed a day at work school teaching.
09-26-2013, 01:31 AM   #68
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What medicine's have helped you or a loved one resolve this issue of seemingly chronic diarrhea.

I've had this symptom for a few months, although I did have a couple of weeks where it went away. I have kept a food diary (w/results) but haven't really learned anything from it. I did the BRAT (Banana, Rice, Applesauce & Toast) diet for several days. That didn't seem to help. My stomach is not churning every time I eat something like it normally does during a flare. I'm only having BM 1 or 2 times a day. Everything seems fairly normal, except I have Diarrhea and gas 95% of the time. I don't think I'm having a flare. Is that just something you have to live with?

Apple anything usually results in diarrhea for most myself included and flares can happen and you don't have 'all the symptoms" you've had before&/that you've been told = a flare and if your just having diarrhea that could be a flare or just a virus BUT THE EARLIER YOU CATCH A FLARE THE BETTER so I would absolutely act as if it were and see doc and hope its not vs. ignore and hope it will go away, speaking from someone who's gone through it ALL Crohn's won't just get better if you try to hope and 'ignore' or in your case ill say self manage?..but it seems right now that's not working..GOOD LUCK!
09-26-2013, 02:06 AM   #69
Elektrikhd
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Did you have much pain in gut I was Diagnosed in 2003 and symptoms came back last year after a colonoscopy My symptoms are mild only go to toilet in morning am once! I`m on Pentasa but on 2 grms a day I was on 4 grms but made no difference.I`m being now tested for blastocytis which is like giardia. I feel very nauseas. I have not missed a day at work school teaching.
When I went to the hospital last year, I was in horrible pain...constant discomfort, and then I felt like I had knives in me the 12 times a day I was on the toilet.

After this colonoscopy I've been fine. Immediately after I was a little bloated, but that was from the air they pumped in during the procedure.

I'm a teacher myself, but I have missed some time over the last year...more often due to migraines, although they seem to be a side-effect of the Humira.
10-18-2013, 10:01 AM   #70
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Hi all, I'm just wondering if any of you are suffering from hairloss. It started falling out in May when I was on prednisone and Imuran. The thinking from my GI doctors was that it was probably the prednisone.

I started taking remicade in July. Beginning on August I finished with the prednisone. My hair continued to fall out. By the end of August I went off of the Imuran (which I read can cause hairloss) here I am nearing the end of October and my hair is still falling out. I've lost over 3/4 of my hair.

I just found out that my vitamin D level is still in the toilet (I'm at a 19 and low normal is 75) my family doc doesn't feel this is a factor in the hairloss but rather is a byproduct of disease and illness.

Anyone with similar issues???
10-22-2013, 06:18 AM   #71
Khaya
 
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Hi guys, I'm new to the forum and have been recently diagnosed with crohn's after believing I had IBS for the past six years. I have been quite poorly over the last nine weeks and wasn't listened too by my G.P which resulted in a ten day stint in hospital.

Im in need of advice I have just been prescribed azathioprine yesturday and feel quite worried to start taking it after learning about the side effects. My consultant gave me two options surgery to remove part of my bowl or azathioprine for at least five years 150mg, so I chose the medication route.. but now I dont know if its best to have surgery.. any advice will be appreciated and if anyone can give me pros and cons of both options would be a great help.
Thank you
Khaya xx
10-22-2013, 06:27 AM   #72
Khaya
 
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Hi guys, I'm new to the forum and have been recently diagnosed with crohn's after believing I had IBS for the past six years. I have been quite poorly over the last nine weeks and wasn't listened too by my G.P which resulted in a ten day stint in hospital.

Im in need of advice I have just been prescribed azathioprine yesturday and feel quite worried to start taking it after learning about the side effects. My consultant gave me two options surgery to remove part of my bowl or azathioprine for at least five years 150mg, so I chose the medication route.. but now I dont know if its best to have surgery.. any advice will be appreciated and if anyone can give me pros and cons of both options would be a great help.
Thank you
Khaya xx
10-23-2013, 05:46 PM   #73
ronroush7
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I would like yo subscribe to the Support group.
10-24-2013, 12:49 AM   #74
CheerBear12
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· Stoma
Hair loss will be caused by medication it happened to me for 5 months after but I had surgery as well and got really really stressed. But don't worry it does grow back. Mine growing back but still really thin but better than it was. Lost loads you could actually see bald patches hoping it stops real soon for you. Are you still on medication how is your flare up now? Probs to do with your vitamin d levels as well
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10-24-2013, 09:55 AM   #75
ronroush7
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I have to take synthroid because of problems with my thyroid and it causes hair loss. My other current medications are pentasa, Imuran, Remicade, Colestid and ditropan. My supplements are Ferrofood and Empower.

2
10-24-2013, 12:19 PM   #76
CheerBear12
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How long you on synthroid for? I'm hoping it'll stop when you stop it . Not sure whether pentasa or infliximab causes it as well. I was on both with the really strong steroids
10-24-2013, 12:54 PM   #77
ronroush7
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It has probably a year that I have been on it if not more. Right now, my hair is super short.
10-24-2013, 02:08 PM   #78
CheerBear12
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Aw that sucks hope you feel better soon. That's probs best idea with it still falling out mine still really thin nearly 2 yrs after op next month (it saved my life) my hair is long as well so as getting longer it looks even thinner
10-29-2013, 09:12 PM   #79
ronroush7
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I have probably been on synthroid for a year. Best to all.

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10-29-2013, 09:53 PM   #80
ronroush7
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Sometimes, I get pain in the fleshy part of my right hand and wonder if it is arthritis.
11-04-2013, 09:56 PM   #81
Hope345
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I was wondering if any of you have been told you might have UC? My daughters doctors are going back and forth. I thought one of the deciding factors is when you have patches of inflammation, rather than continuous inflammation?
I think it is uncommon to have Crohns only in the colon and rectal area and they are confused.
any input regarding Crohns Colitis and ulcerative colitis would be appreciated
thank you
12-11-2013, 12:43 AM   #82
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Hi I am mom to a 17 year old handicapped child,2006 diagnosed with colitis, she doesn't have the many bathroom trips but after colonoscopy which we do to maintain her colitis because she don't tell us of pain,her genetic condition she has extremely hight pain threshold.well we had endoscope and colonoscopy in march of this year and the. A endoscope in march, dr decided. To take her off the 6mp because she was seeing more and more ulcers and treat her with remicade.so in August we stop 6mp by sept 5 she was flaring which has not happened since first diagnoised spent a week in hospital where they did first remicade,came home on steroids and finished them on nov 1. Well nov 20 we started with softer and softer stools by the 29 we were flaring again so we have been in hospital since.she had three remicade treatments, now she had a pic line put in she is getting cipro,flagyl, steroids, Iv fluids,nutrients,tnp!!! Now the dr said lets put her back on 6 mp!! I thought we took her off because she needed to be treated more aggressively ??? No more remicade.we were also approach by pediatric surgeon and he gave us a option of surgery she was scoped last Friday and her whole colon it total colitis!! He is offering to do j pouch surgery,anyone familiar with this,any insight I could get would help so much we are so torn what to do give the meds another chance or do the jpouch
12-11-2013, 01:01 PM   #83
carrollco
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Crohn's colitis: I was diagnosed with UC directly after colonoscopy. One week later my doc called and said biopsies confirmed Crohn's instead of UC. My daughter is diagnosed with UC but my doc says she probably has Crohn's and Kaiser misdiagnosed. *shrugs shoulders* Then my son was diagnosed with ulcers at the terminal illium but that doc said it was ibuprofen induced. Sometimes I wonder if any of them know what they are doing.

Louann Carroll
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Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.
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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!
12-15-2013, 01:42 PM   #84
Hope345
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Jessies mom: I hope you have had a chance to do some research on here. I have not dealt with the pouch. Would it be permanent or for a short period of time?

Carrollco: I sure wish all GI doctors would get on this site. I think it would give them an in-site and allow them to research more options for their patients.

We are currently getting ready to do the anti-m.a.p. treatment for our daughter. It includes 3 antibiotics and works with the theory that Crohns, UC (IBD) is from a bacteria. It has proven to be 80% effective. Here is some info showing that the U.S. is working towards an FDA approval on it.
http://globenewswire.com/news-releas...-s-Study.html?

I wish you both the very best. Keep us informed and ask lots of questions. We are here to help.
12-15-2013, 01:50 PM   #85
Clash
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Jessie's mom, my son has crohn's located mainly in his terminal ileum, there was some inflammation in the colon and some located in the perianal area.

I'm going to tag some parents into this thread, even though your daughter has Crohn's colitis, I don't think a j pouch is generally considered for Crohns due to high failure rate or something. I'm going to tag Dusty, My Little Penguin and possibly Aussie as they possibly give you more information.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-15-2013, 02:43 PM   #86
DustyKat
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Thanks Clash.

Hey Jessie’s mom…

I assume by Colitis it is Ulcerative Colitis? My two have Ileal Crohn’s so I have no experience with pouch surgery, sorry.

QueenGothel's young lass has had j pouch surgery, she is now tagged into this, and if you ask the question in the surgery or Ulcerative Colitis forum you are bound to get answers there. Also use the search function using j pouch and it will pull up any relevant threads.

Good luck mum.

Dusty. xxx
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12-15-2013, 04:12 PM   #87
Clash
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Ahh...sorry Dusty I just noticed the thread being Crohn's Colitis it didn't dawn on me that Jessie's mom may be talking about ulcerative colitis.

Last edited by Clash; 12-15-2013 at 09:45 PM.
12-15-2013, 08:59 PM   #88
QueenGothel
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Best picture and info online are at jpouch.org. I also run a parents of kids with a jpouch group on FB we have wll over 70 members now.

www.facebook.com/groups/ParentofJPouchers

There is a lot of support on FB. Sorry your DD is having such a rough time. J pouch surgery works great for some and not so great for others. Most important part is having a great surgeon. They are not very common amongst pediatric doctors.
01-15-2014, 11:00 AM   #89
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Hello there...i have been diagnosed with Crohn's Colitis ( just a few days ago) someone said that didnt mean i had Crohn's disease and UC, but that I have Crohn's in my large intestine...this whole situation confuses me so badly!!

So with this diagnoses i have Crohn's disease and it is located in my large intestine? Does anyone else have this same diagnoses? How is it different from just plain old Crohn's disease?
01-15-2014, 07:21 PM   #90
carrollco
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I have Crohn's colitis and was told by my doc that it was called that because that is where my ulcers were on colonoscopy. Now I have peri-anal Crohn's along with ileitis, which is inflammation in the small intestine and rectum along with a bunch if other itis' in the stomach region. So, I think it is a phrase that says you have Crohn's in the colon. But that doesn't mean it won't move around like mine did. I just started remicade yesterday after Humira quit on me.

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