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04-18-2013, 10:30 PM   #31
hbrekkaas
 
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If you're mixing it with water, try mixing it with OJ, with pulp. It hides the orange taste and the texture. So much easier to take that way.
04-19-2013, 12:36 AM   #32
rollinstone
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Grouchy, just noticed your in California, have you thought about trying medical marijuana? It helps with reducing nausea and settles the stomach. Far less side effects than pills
04-19-2013, 09:53 PM   #33
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hbrekkaas and Joshuaaa: thanks for the comments. I picked up the zofram today and the pharmacist gave me a clue. It may not be the Questran causing my nausea. I also take Flagyl twice a day. I take Flagyl once in the morning and once at night, it upsets my stomach a little but I can live with it. Then an hour or two after the last dose of Flagyl at night, I take Questran, and then immediately brush my teeth and go to bed. The pharmacist asked if I used mouth wash and I do. It turns out the number 2 ingredient in Scope mouthwash is alcohol? I'm now thinking that is what triggers the nausea - Flagyl followed a couple hours later with mouthwash (alcohol).

I've been using white grape juice with Questran but I will give the OJ with pulp a try. I love OJ, I just quit drinking it during my last flare up but I think I can handle it now. I'll pass on the medical marijuana for now. I do know it helps a lot of people with pain etc. they prescribed it for my first wife (pill form) when she was in hospital with terminal cancer.
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Last edited by Grouchy; 04-19-2013 at 10:33 PM.
04-24-2013, 07:42 AM   #34
Darius
 
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Hi, my husband Darius, has had Crohn's for the past 19 years. We have been married for 14 of those years. He has had a colostomy for 17 years and last year had a permant ileostomy (the entire colon and rectum was removed). He got a pressue ulcer on his heal while in hospital which still hasnt healed and has had many operations on the foot. In all of this he has ulcers around the stoma which seem to have burst and fluid is coming from them. We see the stoma sister tomorrow. I have done lots of searching about these and mostly have found that the Crohn's is probably back. We have two kids aged 10 and 7, and my biggest fear is that they will get it. The last year has been a nightmare and every little task seems enormous.
04-24-2013, 08:41 AM   #35
Hope345
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Darius,
So sorry to hear all that your husband has been through. You have come to great forum that can give you support and information.

As a mother of a daughter with Crohns Colitis, I can understand your concern.
Here is an article that might help:http://www.ccfa.org/assets/pdfs/Wome...y-IBD-Link.pdf

I have been doing a lot of reading and research, and in my limited experience with my daughter, I believe keeping a healthy digestive system is one important key. I would do some research on Probiotics. We are currently using Acidophillus for our daughter, but it is important to keep Probiotics balanced as well. Bacteria are thought to play a huge role in IBD. IBD is very complicated, and no one seems to have all of the answers. Home grown Milk Kefir has brought some great results for people as well.
I
Hope you get all of the support and answers you need and I wish the very best for you and your family.
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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
04-25-2013, 04:48 AM   #36
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Hope345
How old was your daughter when diagnosed?
05-07-2013, 05:37 AM   #37
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Hi, Darius is on methotrexate 25mg a week for the ulcers around the stoma, but the mouth ulcers have started again as well.
Any advise?
05-08-2013, 12:54 AM   #38
Hope345
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D,

My daughter was diagnosed at 13, but symptoms actually started when she was 12.

sorry to hear Darius is having the mouth sores. Could the Methotrexate be causing the mouth sores (allergic reaction) or can they coat the mouth to help?

my heart goes out to you both.

Last edited by Hope345; 05-08-2013 at 11:17 AM.
05-08-2013, 10:57 AM   #39
CrohnsChicago
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According to this methotrextate can cause inflammation in the mouth....

http://www.webmd.com/drugs/drug-3441...0&pagenumber=6

HOWEVER mouth ulcers can also be a symptom of a flare.

You should contact the GI regardless and let them know of this just in case the medication your child is on needs to be readjusted.
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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)
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Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

05-12-2013, 04:33 PM   #40
Dragonfly72
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Hi everyone, I wanted to introduce myself. I was recently dx with CD in March of this year, I was hospitalized for approx 9 days, prior to that I had my gallbladder out in Dec 2011, was told I was one of the "lucky "ones that will have chronic D the rest of my life! For approx 2 mos after my GB Surg I was going 6-16 times per day, working 10-12hours a day as a Nurse, having to tell my patients "I had a phone call" or "I need to check with the doctor on something" all the while running to the bathroom and then rushing back to take care of them. I was also leaving work to take care of my dad who was dx with dementia in Nov 2012, so at this point we are closing in on 1 year of the D, weight loss of 40pounds and I am 5'3 prior to my GB weight was 137. I ended up returning to the GI doc and begging her to help me. She scheduled an uppere and lower GI series with conscious sedation, which I woke up during and felt massive pain. I begged her to stop! Two weeks later I was sched for another colonoscopy and they put me out! (thank god) when I woke I was told I have CD! I was shocked and at a loss for words. Was told to get a CT scan done the following week with contrast and follow up with her after. I drank the contrast 1 week later and had the CT done, within 10 min of completing the test I had explosive D for 2 days, I was so weak! The results returned with 25cm of my ileum inflamed, but report stated not related to CD! This was a typo so I was never called!! That Sunday I was so weak and in such pain with my right side my family said enough and I called GI, they advised me to go to ER, still not giving me the results of CT. Well i was obviously admitted and was not seen by GI for 28hours, and when I did finally see them, they were talking picc line, TPN, possible Surg if the I've steroid did not work in a day or two, nothing to eat for 4 days while in the hospital, I begged them to try and let me eat and they finally agreed and slowly introduced food~ so no PICC or TPN, once discharged I was told I needed to start remicade, 6-MP was advised by another GI in Boston that my brother took me to see. My local GI agreed to this. It has been 2 months of being out of work and albeit I am feeling better and my weight is up 5lbs. I still find I am low on energy and nauseated, with minimal right side pain. I am sorry I am making this so long.... I now have the opposite problem I am constipated and was told to take laxative twice daily with stool softener. Nothing is working... I question if I should do liquid diet until I can go? Don't know anyone's thoughts on this? Also I am on steroids was quickly tapered by 10 per week per my request as I hate that I can't sleep, anxious and shaky on it, well it made me very sick(flu like symptoms) and shaking to the point I could not even write my name:-(. So I am back to 5MG in the morning and 5MG at night. I have my lab work checked weekly and my liver enzymes went up so my 6-mp was decreased to 25mg from 50mg. One more quick question... Sorry... My hair is thining out.... Can this be normal on the meds? I thinks I have heard this but wanted to see if others have experienced this. I am scared and depressed and just thought this may be a good time to reach out! Thank you for taking the time to read my synapse of my experience and I look forward to any who reply! I am trying to get my pic up soon so you can put a face to me:-). My name is Michele


Meds
Remicade
6-MP
Hycosamine
Prednisone
Clonazepam
Prozac
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Vit D
Folic acid
Mirilax
Ambien cr
05-12-2013, 05:49 PM   #41
Hope345
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Michele,

Welcome to the forum and sorry to hear all that you have been through. You will find so much information and support on here...
Some people do get hair loss with IBD but I am not sure if it is from the medication or the IBD.

You have had a lot happen and you have a very busy life. It is a lot to take in.
I hope you can get the treatment that will work for you so you can find some relief.

Prednisone often works quickly to reduce inflammation, but it is only temporary and comes with a lot of side effects.

My daughter takes Melatonin for sleeping and it has worked so well. It is natural and is over the counter. You do not need a lot, usually 3mg is plenty.

It is good they are keeping an eye on your liver enzymes, some meds can cause problems and they do need to watch that closely.

My daughter often gets constipated as well and going from diarhhea back to not being able to go seems to a pattern for some. It is important they check to make sure you do not have some kind of a blockage that is preventing you from passing stools however.

What foods are you able to eat?

Last edited by Hope345; 05-13-2013 at 08:41 AM.
05-13-2013, 07:37 AM   #42
Dragonfly72
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Thank you for your reply Hope,

Right now, low residue, a lot of chicken and potato's. Today I think I am going to go on liquid diet to see if that will help, go back to ensure and broth tons of water etc~. I have to call my GI tomorrow and due for labs on Wed. Fingers crossed the next few days will be better! Again, Thank you for your reply, I hope I can make some friends on here to chat with about this horrible disease!
Many thanks,
Michele
05-13-2013, 07:53 AM   #43
Darius
 
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You were right Darius has full blown severe CD. Back on lots of cortisone. Mouth ulcers are CD.
05-13-2013, 08:49 AM   #44
Hope345
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Michele: I hope the liquid diet provides some relief. It can allow for some healing time and less in means less out. Did you decide to take the stool softener?

Darius: Sorry to hear Darius is in a flare. Have you already viewed the EIM section? You may find some suggestions for treating mouth sores? http://www.crohnsforum.com/forumdisplay.php?f=81 What has his doctor suggested?
05-13-2013, 08:53 AM   #45
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Just. Started cortisone which is suppose to clear it all up
05-20-2013, 08:56 AM   #46
Darius
 
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hi, Darius got a second opinion on the ulcers around the stoma and it is Pyoderma gangrenosum.
So the cortisteriods have been increased to 80mg a day, iron tablets and folic acid daily. Methotrexate still 2mg a week.
Doctor says will swell up like an ox. But as long as it helps.
Regards Sharon
05-20-2013, 09:08 AM   #47
Hope345
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Sharon,
I hope it clears up soon for Darius. I am curious why his is called Pyoderma gangrenosum. I was just looking in the mouth sore section and did not see that. http://www.crohnsforum.com/wiki/Mouth-Ulcers.

Some have said if you cut back on salty foods it can help with bloating. I wish him the very best.

Does he sleep okay at night? Melatonin is a natural sleep aid, that is very effective for most. Small dose is best, 20 minutes before bedtime. Steroids can make you anxious and agitated, something like Camomile tea might help too.
05-20-2013, 09:13 AM   #48
Darius
 
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Hi thanks no mouth ulcers crohns flare as its intetnal suppose. I just for the best at this stage. Will try the tea.
05-20-2013, 09:40 AM   #49
Hope345
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Oh, I am sorry, I misunderstood. Hopefully the steroids will stop it in its tracks. They are good for that. Hunger pains seem to increase with the steroids too which is not good for someone in a flare. Maybe several small meals would be better.
Some foods make you feel full longer: whole grain rice, beans...

He is very blessed to have such a caring concerned wife.
05-20-2013, 11:15 AM   #50
CrohnsChicago
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Maybe several small meals would be better.
Some foods make you feel full longer: whole grain rice, beans...
High-fiber foods are actually more commonly avoided during a flare. (whole grains, beans, broccoli, etc). You want to focus on the low residue stuff if you can tolerate. High fiber foods take a lot of work for your body to break down and consequently can add to your intestinal pain and make healing more challenging to achieve.

It is typically recommended that people stick to white breads, white rice, mashed potatoes and other low residue foods while trying to get rid of a flare. Once things clear up, then you can start to slowly re-introduce the high-fiber foods if you can tolerate them.

Yes, several small meals are usually better because your body doesn't work as hard as it would if you were to digest a larger meal.
06-12-2013, 06:22 PM   #51
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I'm very curious as to the difference between Crohns and Crohns/Colitis. Most definitely have Crohn's and am on Remicade and Azathioprine. But I do believe I heard Dr. say Crohns/Colitis at our last appt, and I was fairly miserable at the time so did not ask any questions. (Increased Remi since and feeling better).
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now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
06-12-2013, 07:14 PM   #52
CrohnsChicago
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Crohn's-colitis is still crohn's....however it is crohn's that is located in your colon instead of your small intestine like most people have.

The word colitis contains the root word "colon" in it so that's why they call it crohn's-colitis.

Types of Crohn's Disease:
http://www.ccfa.org/what-are-crohns-...s-disease.html

The chart attached shows the difference between crohn's and ulcerative colitis and how doctors will typically diagnose you with one or the other:
http://www.crohnsforum.com/wiki/Croh...rative-Colitis

Last edited by CrohnsChicago; 06-12-2013 at 07:31 PM.
06-12-2013, 09:36 PM   #53
tots
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Originally I was diagnosed with Crohn's in the illium. Now years later it includes "left sided"
Colitis. Is this crohns colitis?

Thx

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
06-12-2013, 09:57 PM   #54
Hope345
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Tots: It sounds like your Crohns is located in the small intestines and the colon, which is common with Crohns. Crohns Colitis most commonly is used when you only have Crohns in the colon but sometimes can be a way of referring specifically to the location.
06-12-2013, 11:53 PM   #55
tots
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So when I look up my specific type and symptoms which do I
look at?

Lauren
06-28-2013, 08:49 PM   #56
cleuger
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I have Crohn's Colitis but all of my disease is on the left side of my colon they did find a very small spot of inflammation in my small intestines. I have absolutely nothing on my right side. I saw the symptoms at the beginning of this thread was for the right side does that mean they could be wrong with my diagnosis? My Diagnosis was done by colonoscopy and lower barium and lots of labs. I thought they got a pretty good birds eye view but you never know.
__________________

Diagnosed 10/02/2012 Crohns Colitis
05/28/14 Surgery Abscess due to Fistula
09/18/2014 Surgery Total Proctocolectomy
rectum removed and closed up.
Best Decision I ever made.

Gastro Released me said I didn't need meds any longer

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06-28-2013, 11:57 PM   #57
Hope345
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Cleuger,
Each person is so different and often do not fit the typical symptoms.
My daughter is somewhere between Crohns colitis and Ulcerative Colitis. She fits both and doesnt fit either completely.

I added your symptom to the list, thank you.

I hope you you are doing well.
06-30-2013, 03:20 PM   #58
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Hi all, I was and wasn't diagnosed with Crohn's.

I had my colon removed (all but 4 inches) and resected to my rectum in 1998 and almost had to have a bag but my bowels finally woke up and did their job. Everything was great until about 2 years ago when I started having bowel incontinence every once in awhile. I didn't worry about it because I thought I just had a bug whenever it happened. I also have several other health issues that ended up with me being on disability.

Suddenly about 6 months ago the incontinence became an every time I got up. I couldn't go shopping or if I did I knew I was going to lose my undies. I refuse to wear Depends, etc. I'd rather lose the undies! I wasn't yet on Medicare and couldn't go to the doctors. I finally got to go last month and he did the colonoscopy, fecal tests, blood tests, etc. Everything but the colonoscopy was normal. He had to take several biopsies for testing from where the colon/rectum is joined (don't know the technical names) and several feet into my small intestines. And I had several ulcerations from the join to several feet of my small intestines. The biopsies came back negative for cancer. I go in to see him three weeks later and he said he had put my case before a conference of GI physicians because he felt I shouldn't have Crohn's when none of the tests indicated it but it was presenting as Crohns. The foremost authority said it was Crohn's and to confirm it with the Prometheus tests.

My doctor has started me on Prednisone and wants me to do the Prometheus tests and eat a no fiber diet. I see him again in 2 weeks.

My questions are:
Has anyone had their colon totally removed (they only left the 4 inches so they could attach my small intestines to my rectum) and then been diagnosed with Crohn's. Did you have incontinence and how do you deal with it? I have mild pain (because I have an extremely high tolerance to pain), bloating, gas, the incontinence, extreme fatigue, and hair loss. But all tests show I am perfectly healthy!

Has anyone been put on a protein diet and is there anyway I can get the missing nutrients because I can't have fiber of any kind? (A multi-vitamin won't work because they come out whole in 30 minutes).

Does anyone have the problem of passing your meals with a few hours? My internest asked my to do a beet test (eat it and see when the purple red comes out) ... he did it at the same time ... his 2 days ... mine 1 hour 45 minutes?

I went through 9 months of total misery before they removed by colon in 1998 and now it is starting again in 2013. I'm at the point that I'm sick and tired of being sick and tired.

Thank you to anyone who can answer my questions.
06-30-2013, 04:01 PM   #59
Honey
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Hi there,
I am currently on Infliximab infusions for Crohns and O.K. so I cannot answer your questions, but I am sure someone else on this site will. I did however have three very hard years, trying different meds which I reacted badly to, even having Pancreatitis! I shed many tears. I am sending you best wishes for a speedy recovery as I understand what a hard time you are having!!!!!
I hope you have had a reasonably good day. You are in my thoughts and prayers. Let me know how you are?
06-30-2013, 07:02 PM   #60
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Honey,
Thank you for your prayers and well wishes. I'll keep looking at the threads and reading the posts. This is only my first day on the site.

I'm doing okay and have my family supporting me. We went to an Italian restaurant about 20 minutes away, of course the minute I walked in the door when we got home it all came right back out, we had sat and visited for about 15-20 minutes. I asked my doctor if that was normal and he said it depended on the person but it could happen. No pain today lots the last couple of days. Just started the prednisone on Wednesday.

Hope you are doing well and thank you again,
Carney
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