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Ulcerative Colitis
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Posted 5/27/2024 4:27 PM (GMT 0)
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I have colitis-diagnosed last July by colonoscopy and other tests. Is not ulcerative and is an IBD not IBS I really need help. When first diagnosed was on Budesanide which worked great but I have severe osteoporosis-have had 9 vertebraplasties where they put cement in fractured vertebra so just can’t do that med long term. Really don’t want the “big gun” meds if I can avoid them. So trying to do diets and herbs and Imodium and Pepto and hyosyamine.
Not working well-tend to get better and then it falls apart. I can not seen to be able to eat many veggies at all-esp lettuce and spinach which, of course, are really good for you and I love. Most Vegs seems to be off limits, have found some fruits I can eat but not many.
I did see on one of the reputable clinic websites that Boswelia Serrata did appear to help and that does but if taken to long also constipates you so am having to play with dose.
My diet has fallen apart/thankfully milk products do not bother me so can use yogurt with cultures and I do not have problems with gluten. However missing out on fruits and vegetables really concerns me. I also find myself eating way too much sugar !
Going to a new Gastro soon and going to find a dietitian but my insurance will only pay for 3 visits!!
Any suggestions would be greatly appreciated Thank you.
Posted 5/27/2024 10:49 PM (GMT 0)
If it's not microscopic colitis, but it's chronic, what kind of colitis is it? Microscopic? I'm not really informed on other types of colitis outside of UC.

As for vegetables, it can help to eat well cooked ones. When I'm flaring, I eat a lot of cooked carrots. The raw veggies, as good as they are for us, are harder to digest, but the vitamins and minerals in vegetables are still very good. I also ate things like blueberry smoothies with kale or spinach in them, and fresh ginger, which is an anti-inflammatory.

Too much sugar can add to inflammation, so it's good to avoid it. Do you eat meat? When I'm flaring, I've gone for poached chicken or roasted pork tenderloin (well chewed) for protein and bone broth; well-cooked white rice; cooked carrots--bland but nourishing foods.

I'd also encourage you not to be afraid of medicine if you need it. Again, I'm not sure what your disease is, but IBD is a lifelong illness (at least for now), and most of us end up needing meds for quality of life--and for life. As my rheumatologist says, joint pain won't kill me, but my colon could, so I need to prioritize treating it.
Posted 5/28/2024 12:34 AM (GMT 0)
It is microscopic-should have mentioned that.
I will try cooked carrots again, I just read puréed spinach might be ok but raw I can’t seem to do spinach, kale or lettuce which I really like!! Yeah chicken,pork and white rice I can do ok.
The joint pain I can handle it is the fear of more vertebrae fracturing and ending in a wheel chair that really concerns me. But I hear you-will talk to new GI about possible meds.
I have added some powdered fiber which had not helped previously but is now thankfully. But it is so up and down with good days and bad-so discouraging.
I appreciate your input!!
Posted 5/28/2024 7:18 AM (GMT 0)
What type of microscopic colitis do you have? There are two main types: lymphocytic and collagenous. Microscopic colitis is most commonly diagnosed in middle-aged women. For some, it flares only occasionally and is fairly easy to treat. For others it can be pretty relentless. My mother and my aunt have it. The good news is that it doesn't seem to raise one's risk of colorectal cancer, and the need for surgery due to it is quite rare.

So the main goal of treatment is to help with symptoms (unlike UC and Crohn's, where just treating symptoms isn't enough because long term complications like fistulas, abscesses, strictures, cancer, etc, are a concern).

Budesonide steroids are a very effective treatment for it, but you are wise to avoid long term use with your osteoporosis. Another treatment option is pepto-bismol at up to 8 doses per day. Start with 2 doses per day, and slowly work your way up in dosing, up to 8 per day, until you find symptoms have resolved. Then stay at that dosing for a couple of months before slowly lowering back down.
Posted 5/29/2024 3:38 PM (GMT 0)
It is collagenous-and your reply is reassuring-no doc has ever told me the long term problems don’t usually affect this type. I have had 2 GI docs who have either given me conflicting info within the same office or just were not helpful. The one I am seeing in June is highly recommended by a DO I really respect and I have high hopes for this one.
Your info is very reassuring since your mom and aunt have it too and I really appreciate it . I have been taking Pepto but just PRN. I will start the daily regime today and hopefully that will help!!
Thanks for your response-this forum is proving to be a real blessing-wish I had done it before now!
Posted 6/11/2024 8:33 PM (GMT 0)
My mom has both types of microscopic colitis. She is 84 and developed it 10 years ago. Unfortunately it has never gotten better. Most days she sprints to the toilet within 15 minutes after eating. Sorry to discourage you, but she had a Dr. Who said there is no treatment. However...she takes 4-6 immodium before leaving the house and can usually eat a meal for lunch and make it home in time. I wish she would have tried some medication 10 years ago....but non was suggested.

She has problems with tomatoes, lettuce, and various other food, especially beef and gravey.

I have UC and it's a lot different than hers. I'm not sure if it's hereditary. One of my kids may be susceptible for IBD, but has not progressed.

Wish you well...Sassy
Posted 6/11/2024 9:48 PM (GMT 0)
Thanks Sassy. I really try to avoid the Imodium as one of my docs said it works by basically paralyzing your colon and that is why the constipation is so bad afterwards. I have been trying the pepto twice a day for a couple of weeks and will up it soon to work towards the 8 doses that was recommended to try til things settle down. I really like the Boswellia Serrata but can’t take it daily as it can constipate too so I generally do them for 2-3 days and then off for 2-3 days too. Hyosyamine helps me at night as I used to have spasms the minute I laid down.

You might suggest your mom try Budesinide as it worked really well for me but with osteoporosis I really could not continue to use it. I have had too many spinal fractures I just can’t chance more-but it was kind of a miracle!!

Good luck to you both!!
Posted 6/12/2024 5:53 PM (GMT 0)
My mom did try something similar to Boswella Serrata, it took years for us to convince her to try. She became so constipated, and in pain, that she stopped. She preferred the diarrhea! She wouldn't even try 1/2 dose. "Guess you can't teach an old dog new tricks" lol

She does have arthritis in her jaw that can cause horrible debilitating pain when it flares up. I really feel for anyone that has it.

Take care
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