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03-11-2014, 04:51 PM   #121
CrohnsChicago
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mama21princess you need to let your doctor know that you are still experiencing abdominal pain and cramping. Does the pain seem to have at least gotten a little better or worse since starting prednisone?

Also, is this your first time on prednisone? The more times you have to go on it, the different the effects can be on people. It does take time to hela, but after two weeks at 40mg it's more likely that you should be seeing some significant relief of crohn's symptoms in spite of medication side effects.

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.
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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)

03-11-2014, 06:58 PM   #122
long time crohnie
 
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Mama21: So sorry to hear you're still in pain! Did you have tests that showed any narrowing or just inflammation? Reason I asked is because I never got pain relief from prednisone when I had a lot of narrowing. If I did it was after a good month of being on it. Let your doc know you are still experiencing pain. Maybe you can get some pain meds to get you through till the pain subsides. I wish you luck

A question for any of those who have been prescribed Lialda, I have a friend who has recently been diagnosed w colitis, completely out of the blue too. Never had any symptoms until 2-3 wks ago. Shes very active in sports and was very healthy. Her colonoscopy showed ulcers and bleeding in her colon. She was experiencing blood in her stool and severe cramping and D. Her doc put her on Lialda, which I had never heard of, and within a week she ended up w severe, debilitating pain in her lower back and butt. Sounds like it was sciatica. She was eventually hospitalized, taken off Lialda and given a cortisone shot in her hip. She got better, and was put on prednisone. Back to my question: Has anyone ever had these problems with a flare of colitis? Docs think they may be related re inflammation or a possible side effect of Lialda. Just unusual and was extremely painful to see her in that kind of pain. Feedback please.
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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
03-11-2014, 07:10 PM   #123
mama21princess
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This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.
03-13-2014, 01:55 PM   #124
long time crohnie
 
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This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.
You need to be your biggest advocate w this or any disease. If your doc isn't telling you much, then you have to ask. Push him if need be, call a lot and speak to anyone over there that will listen. What I learned the most after all these years, you MUST educate yourself re crohn's and to not let the docs tell you how you SHOULD feel if your not! If you are still in a lot of pain, tell him and that you would like him to do something about it, and if he won't, then ask him to tell you who will. This illness is so vague that we need to be specific. Please stick up for yourself and tell your docs what YOU need. Praying for you!!
03-13-2014, 04:46 PM   #125
JudithC
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long time Chrohnie, you're so very right. But why do I feel guilty every time I leave the Dr. office? Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison. 5 items on the list, just FIVE!
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Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
03-14-2014, 09:33 AM   #126
long time crohnie
 
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long time Chrohnie, you're so very right. But why do I feel guilty every time I leave the Dr. office? Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison. 5 items on the list, just FIVE!
Wow!! I know good docs are hard to find and everyone likes different things in their docs. I personally need an empathetic doc who will take time w me and not look at me like I'm crazy. I had THE PERFECT gi doc when I was first diagnosed. He was a leader in the field and well respected and liked by other docs. Unfortunately, he retired. I took me two different docs till I found one who would work with me. A lot of docs get intimidated by those who ask questions and know their bodies well. I don't like those. I like those who are impressed w my knowledge and work as a team.
03-14-2014, 09:45 PM   #127
mama21princess
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When I've talked to him about my pain before, I've gotten the feeling that he thinks I'm being a baby about it. My last appointment, I did ask him a question, and it felt like I was inconveniencing him.
03-17-2014, 06:19 AM   #128
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Anyone else have Ankylosing Spondylitis? seems this is worse than my Crohns now. I'm very scared...
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Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
03-17-2014, 11:49 AM   #129
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Anyone else have Ankylosing Spondylitis? seems this is worse than my Crohns now. I'm very scared...
Hi, I just had an MRI on Saturday to look at my spine especially my si joints. They are thinking there is a good chance it's arthritis. I have to wait another 2 weeks to find anything out. I find the pain unbearable.

What are your doctors saying to you in terms of treating the ankylosing spondylitis?
03-17-2014, 11:51 AM   #130
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I'm heading to the doctor now. I will let you know. I'm asking for the gene blood test today.
03-17-2014, 11:53 AM   #131
Jajabinks
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The pain is horrible. my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.
03-17-2014, 08:46 PM   #132
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The pain is horrible. my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.
Thanks, my Rhumatologist is fantastic, she has sent me for every test imaginable. Even when they come back negative she just sends me for more tests! My GI on the other hand just buries his head in the sand, if it isn't directly related to my GI tract he couldn't care less.

Let me know what your doc says about your treatment. Best of luck to you.
03-18-2014, 06:01 PM   #133
Jajabinks
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Angie I have been complaining for months about my tailbone/butt cheek pain, the doctor acted as if I did not even say anything, didn't even make a suggestion. Had it not been for support groups and the internet, I would be so lost. My GI didn't give a darn either about my complaints. I will let you know as soon as I see the rheumy. I am so nervous and depressed. Two diseases...sighs...
04-20-2014, 07:48 PM   #134
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Hi. Does anyone else have involvement of the biliary system with their Crohn's? I have involvement at the ileum which has been my usual area but now am having biliary issues too and my GI is certain that it's my Crohn's.
04-30-2014, 09:00 PM   #135
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Hi Keuka,
I haven't, but I hope some one else will come along soon that might have some information for you.
05-01-2014, 04:16 AM   #136
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Can I ask a quick question
lo is undiagnosed and hoping to get a diagnosis soon.
his stool looks like theres 'fibres' in them? Like hes been eating weetabix of something. Rather grainy andvery watery im gguessing its overflow as he suffers from chronic constipation.
Any ideas? Thank you
05-10-2014, 10:50 PM   #137
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New to this group but have been reading threads and seeing my same
problems. I ended up with crohns/colitis late in life and have been with it
for about 8 years. Right now my only medications are 2 1/2 mg. of prednisone
daily and occasional use of Cortifoam. While my gastro dr. doesn't believe
in it, I've been taking LDN for a number of years. My GP agrees to writing my prescription. It certainly has not been a cure, but despite never really getting into a remission, I put up with symptoms and remain fairly healthy. Diarrhea,
big time gas, and bloating have been the worst culprits, but now there are some days when I actually am constipated....that is a new twist. I follow some
of the SCD diet but find I must avoid dairy, most raw veggies, and I stay
gluten free. I use lots of almond flour for baking breads, cookies, etc.

Glad to share with others...........
05-21-2014, 08:33 AM   #138
Hope345
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Has anyone been tested for food allergies?
My oldest daughter diagnosed with IBS has been suffering for 2 years and we just found out she is very allergic to dairy products (not lactose intorelant), almonds, egg whites, and allergic to wheat gluten. My daughter with either Crohns Colitis/U.C. has to wait until she is off meds to get an accurate result. I am so hopeful that a food may be triggering her inflammation. She is also seeing a Naturalpath today and we are hoping she can offer some input.

I am not completely against the Remicade/Imuran and Mesalamine but they dont target the colon as well. (however she is using the mesalamine enemas). It has been a blessing to get her off the Remicade because it wasnt working very well. It did eliminate the inflammation she had in 2 other spots of her colon and now it is strictly in the rectal area.

Please let me know if any of you have been tested for food allergies and if eliminating those foods eliminated inflammation. thank you
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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
05-23-2014, 04:58 AM   #139
mama21princess
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I was tested for food allergies, but they all came back negative.
05-31-2014, 07:44 PM   #140
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Long time crohnie I was given lialda too . Let me tell you severe frequent back aches , and chest pains that medicine sucks!!! Asacol same thing . I stopped my meds.


07-07-2014, 05:09 PM   #141
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I was not tested for food allergies but at the suggestion of my nutritionist at Vandy I cut out all lactose and started drinking the 99% lactose free Kefir. Kefir is GREAT. I can only eat in the afternoon most days and the Kefir helps me have something in my stomach in the morning to take my meds with. I still get nausea, though now it is not every single day. I drink Lactose-free milk and I got some fabulous lactose-free cheese (after trying several nasty ones). I recommend anyone try it if they are having problems, give it a few weeks and see if it doesn't help a little. Every little bit helps.
07-15-2014, 09:31 PM   #142
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Hi All, one comment and then a question:

First, I just read this entire thread and wanted to clear something up. Crohn's colitis is NOT Crohn's AND Ulcerative Colitis... It's Crohn's disease of the Colon only. Treatment is the same as UC, the difference comes when surgical options are slightly different.

Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine? I've already failed remicade and so I'll start the new drug Entyvio next week. If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures). I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?

Any feedback is appreciated. Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center. Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI. I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.
07-15-2014, 10:11 PM   #143
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I can't offer much, except to say that my first colonoscopy in the hospital had the GI doc thinking Ulcerative Colitis, based on what he saw inside. Everything was inflamed, and there was ulceration. But, biopsies and stuff were inconclusive, so he he went to "unsure" on the exact disease. Had a flexible sigmoidoscopy later, and what he saw that time was a little different, looked a little more Crohn's like, but again the biopsies were inconclusive. He updated his diagnosis to "probably Crohn's," and it was later confirmed by the Prometheus test. Although it was never brought up, I do have a history of mouth ulcers...not bad ones, but I always wondered where they came from, and only after the Crohn's diagnosis and reading up on it did I realize that it might be connected. (And actually since starting Humira, I don't think I've had a single one.)
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Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements

Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
09-09-2014, 12:48 PM   #144
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I've been suffering from the effects of crohn's for 40 years now but mostly from the results of the surgery I had in 1971. Sections of my ileum, small bowel and several feet of diseased intestines was taken out. As result, by bathroom habits changed drastically. I have BMs 5 or more times a day and I need B-12 shots monthly. Fortunately I haven't suffered the severe cramps I once did when I suffered in my teens. In the past few years though I've had some issues with my urinary tract. I've been experiencing pressure and some pain when urinating and I can't just urinate without a BM as well. Upon my last visit to the urologist and given and exam he told me my bladder looked pretty bad.
I've had problems with kidney stones over the years too. I've been reading that crohn's can effect the bladder and prostate as well. I'm wondering if that is true. And if so, how many people are experiencing this crohn's side effect as well?
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Suffered badly with Crohn's/Ileitis till diagnosis in 1971and received bowel resection surgery to fix resulting obstruction and perforation the spring of that year. Few symptoms displayed since then, but diagnosed with Celiac Disease about 6 years ago.
Take Asacol occasionally for flare-ups (due mostly to antibiotics), supplements like multi-vitamins, Calcium and OPC-3 in Isotonix form.
09-09-2014, 07:44 PM   #145
Elektrikhd
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I've sometimes had urination set off a BM, mainly during a flare. This summer I thought I had a UTI, but the urine sample came up negative. Symptoms cleared up. Something occasionally seems a little 'off' but I can't quite place it. I'm having a flare right now and noticing that sometimes I have to sortof 'push' to empty my bladder doing a BM. Is this similar?
09-09-2014, 08:35 PM   #146
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I don't know if you got my last reply. If not, this may be repetitive, sorry. Yes, I do have the same "push" to empty my bladder during a BM. The good thing is though that I now can empty my bladder completely. I'm taking a herbal supplement that has helped a lot, better than the prescriptions I was taking even. But the problem has not gone away. I've read that you can have fistulas in the bladder, like in the bowel region. I know the crohn's has been partly responsible for the several kidney stones I've produced over the years. Man this is frustrating!
09-13-2014, 03:58 PM   #147
Pilgrim
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Hi All, one comment and then a question:

First, I just read this entire thread and wanted to clear something up. Crohn's colitis is NOT Crohn's AND Ulcerative Colitis... It's Crohn's disease of the Colon only. Treatment is the same as UC, the difference comes when surgical options are slightly different.

Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine? I've already failed remicade and so I'll start the new drug Entyvio next week. If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures). I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?

Any feedback is appreciated. Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center. Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI. I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.
My daughter has Crohn's limited (at this time) to her colon. Crohn's colitis. Before the path report that found the granulomas in her biopsy samples, she was given sulfasalazine while we waited. Once the doctor got the report he told me we could just throw away the sulfasalazine, because she has Crohn's and not UC. So, I think the treatment options are different for the different diseases. She ended up on exclusive enteral nutrition and now Aza.

I also understand that if you have Crohn's and have a surgical removal of your colon, it could put you into remission but is no guarantee that you won't have the disease reappear in a separate section of your GI tract.

Did you end up having to make a decision about surgery?
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
09-28-2014, 10:07 PM   #148
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In a note to my gp, my gi said I have pancolitis. Wikipedia says that means I have Colitis but the rest of the colonoscopy disputes this. I am confused.,

2
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-01-2014, 09:03 PM   #149
Pilgrim
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Colitis is more of a generic term. It doesn't mean "Ulcerative Colitis" necessarily. It could mean inflammation of a variety of sorts. Maybe UC, maybe Crohn's, maybe even caused by an allergy, etc....

Pancolitis means that your disease is spread throughout your colon, and not limited to one area of the colon. What it doesn't describe is how deep the inflammation goes.

I was really confused about that at first. I hope that helps.
10-01-2014, 09:46 PM   #150
ronroush7
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Thanks.

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