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Collagenous colitis - Collagenous gastritis
I was diagnosed around 20 years ago. I was only the 7th case my specialist had ever diagnosed. so it was a little rare at that time. I had had symptoms for 10 years or so and had not gone to a specialist. So, now, I have had the symptoms for about 40 years. My doctor said in 2015 that it would burn itself out. It didn't. There was a time when I was so much in pain that I was wishing they would just remove my intestines. lol Sometimes it is still that bad. Do we really need to have to take meds forever for this ?
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I to suffer from chronic gastritis which I can't get rid of even on Pantaprazole PPI. Get rid of the fruit and only eat melon, and ripe banana, only drink unsweetened almond milk which is non dairy and alkaline. I had gerd and H Pylori which is now gone. Good luck!
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1 ReactionI too have CG, diagnosed 3 years ago. I feel your pain. I take steroids which seems to keep it somewhat under control. Have your doctors prescribed steroids at all? It took me about a month to 6 weeks before I started feeling a bit better.
I took budesonide for a couple of years, but when my skin started tearing off when I brushed past a piece of furniture, and had bruises everywhere, I had to stop it. When you take the steroids like that for a long time, there can be a resurgence of symptoms when you stop, so I had to ease off of it.
Thank you for the info on budesonide, that's what I take, nothing else can control the colitis. When I stop taking it the symptoms return in a week to 10 days and it takes months before I feel anything resembling normalcy once I get back on the budesonide. I don't know what I'm going to do if I have to permanently stop taking it. My whole life has changed do to this condition. Other than the colitis I am a healthy 79 year old, walk twice a day, many miles, workout and maintain my big house by myself. I have never had anything resembling this condition in my life.
I just started taking budesonide. What is the dosage you take?
They have me on 2 capsules a day (3 MG each) which I think seems like a lot seeing as I’m also on a blood thinner.
I also take 2 capsules a day (3 mg each).
I don’t know how or if it interfere s with a blood thinner. Your doctor my be able to tell you. From what I understand about this steroid it only works in the bowel. I take no other medications.
The only side affect I’ve noticed is cramping in my hands and feet.
Let me know if you find any other side affects.
Another side effect is weight gain. In addition to bruising and very thin skin on my hands (which seems to always be ripping off and bleeding) I gained 20 pounds in a matter of 4-6 weeks. I don’t know what else to do though, if I quit taking the budesonide 3mg then I can’t leave the house (bathroom) and that’s not good either.
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1 ReactionI know what you’re saying about being a prisoner in your house, me too without the steroids.
I have just the opposite problem, I continue to lose weight, everything I eat goes through me. The doctor checks my blood readings often to make sure I’m not suffering from malnourish. I feel your pain.
@redill - I’m surprised to hear about the weight gain. Budesonide should only act within the intestinal walls, right?
That’s what I understand too. Not supposed to be the side affects normally associated with steroids.
I only have problems when I stop Budesonide.