Tired of colitis

[LoomiJil]

I first was diagnosed with proctitis when I was about 20 but the doctor prescribed a sedative, believing it was stress related. After that I had about 4 or 5 flare ups over the course of the next 50 years, not having been officially diagnosed with Ulcerative Colitis until 12 years ago. Mostly I tried fasting or Chinese herbs for those flare ups and largely, it worked. Until a big flare up 12 years ago that required me to go to a gastroenterologist and get a colonoscopy. I had tried all of my alternative therapies and they hadn't worked. I lost 40 lbs and I'm not a very large female.

After the colonoscopy my doctor set me up with a bag of intravenous prednisone which stopped the bleeding and uncontrollable diarrhea at last. Never thought I would welcome a steroid! Following that was a month of prednisone pills to wean me off of the steroids and a year of Lialda (delayed release Mesalamine). I also changed my diet to the specific carbohydrate diet, which I am convinced help me to heal. After 6 mos. of taking Lialda I decided to go off of it but within days I had blood in my stool again so I continued with the Lialda for the whole year.

I have had no noticeable symptoms of UC for 12 years. I did have a couple of colonoscopies that revealed "scar tissue", which didn't surprise me. No mention of active UC though. Then a few months ago I got a new, young Asian gastro doctor who did the colonoscopy and he found no active UC but several incidents of inflammation all over the large colon and rectum. Mind you, I still had no noticeable symptoms; regular normal bowel movements, etc. He prescribed oral Lialda again and this time, nightly Mesalamine enemas. I see the point of the enemas because the pills can't really reach the rectum where I do evidently have some residual inflammation, but he says he wants me to continue with these for life(!) in order to avoid colo-rectal cancer. I have been compliant for two months but honestly cannot see me doing this for life. I'd like to find an alternative that works. Lately I've been having muscle pain that I've never experienced before and have no idea what is causing it. It could be a reaction to the Mesalamine. I'm an active person, do Pilates 3 times a week and want to continue to be that way. Any ideas?

[SkinNBones]

while you wait for replies from those who know more, curious if you have ever tried tracking the inflammation over time using stool levels of calpropectin (or however thats spelled). See if correlates with symptoms. Have you also had a cat scan? Just curious how the results would compare to the colonoscopy. 40 lbs is alot.

[bantam12]

With UC the ideal treatment is to stay on a maintenance dose of whatever works for you to keep you in remission. I’ve had UC for most of my 69 years, been on Asacol for the last 30 years and it’s prevented any major flares.

The danger is you either stop the meds or start experimenting with alternatives and you end up so much worse off and needing to go back on steroids or something more potent.

Yes we are all “tired of UC” but personally I would rather stay on the meds and prevent future problems.

[tiredpuppy]

I have lymphocytic colitis, which supposedly doesn't lead to cancer but has the same symptoms. I had become almost a hermit, fearing the sudden watery diarrhea, taking Imodium before leaving the house and always carrying some in my pocket and purse, keeping extra clothes in the trunk of my car. Just before my appt to get steroids, because I needed a break it had gotten so bad, I learned about the herb slippery elm. 2 capsules 3 times a day on an empty stomach changed my life. I still have colitis but it is at least 70% better. No more big messes in public. Evidently it coats the colon, soothes, and aids in healing. I don't know if it would interact with any medications. When I told my gastro dr about it, she said, Oh, yes. Lots of my patients use it. I asked why she had not told me about it. She said they preferred to use medications. Grrrr. I now take 1 in the morning and 2 at night. So grateful for a safe way to help myself.

[birkie]

I'm very interested in your post can I ask are you taking thyroid hormone replacement?.I ask because in 2015 I suffered from rectal bleeding and vomited blood I'd had what I thought was stomach flu for around 2wks but this continued then the blood started so I got the doctor on a home visit, she immediately phoned for an ambulance and I was admitted to hospital.

I had no idea why or what was wrong with me only that I was passing bloody diarrhoea and vomiting dark blood.

After 6 days of this the gastro was at a loss he couldn't find any viral or bacteria infection but noted both my large and small intestines were severely inflamed as he put it.." you have inflammation from A to the stomach A meaning ares 🙈 I was pretty ill.

I had cameras everywhere 😬 the colonoscopy showed server inflammatory bowle disease he diagnosed reactive colitis, I was put on intravenous steroids in hospital for 12 days ,sent home with 3 months supply of steroids.

Felt great on the steroids but ultimately had to ween off them I had re lapses so I did a food diary and eliminated dairy I was also lactose intolerant so went on lactose free stuff did fantastic until I was diagnosed with hyperthyroidism [graves] and put on anti thyroid drugs ...bang!!!! Everything came back inflammation, pain ,cramping diarrhoea .

I knew immediately it was the anti thyroid drug, I just couldn't stomach it lost my thyroid to graves thyrotoxicosis and now the thyroid hormone replacement is doing exactly the same, I've never been able to stomach it in the 5 years my endo prescribed it, both T4, T3 synthetic, my bloods are awful, but no one cares😢 and they won't help, I asked about a course of steroids for a month to help the inflammatory part ( honestly some days I look 6 months pregnant) but my gp and endo as refused they are just keeping me on the synthetic stuff although it's supposed to be lactose free I think it's the other fillers that's effecting me😡

[bresbo]

If you have no adverse reaction to mesalamine/mesalazine, and your symptoms return if you stop taking it, then all other things being equal, I'd say play safe. If your inflammation is "low down", you might want to try another brand of oral - eg Octasa - but also try replacing the enemas with suppositories which are less messy. However, it could be that suppositories don't "reach up" far enough, so enemas (or rectal foam) are what you need.

There's no harm in experimenting to find what suits you and your life best.

If you should find you're tipping into a flare, do ask to try steroid rectal foam - either prednisolone or budesonide.

[LoomiJil in reply to bresbo]

Thanks to all who have replied. An answer to the question about my thyroid, I have had it checked, and it seems fine. After two months now of using the mesalamine enemas, along with the oral mesalamine, I seem to have adapted to it OK. I did not have any symptoms before starting this program, but there was inflammation found during biopsies of my last colonoscopy.

The issue I was having was just being prescribed more medication when I hadn’t had any symptoms for many years. But since the mesalamine is well tolerated for me and the mesalamine enemas, although not fun, have not turned out to be messy as long as I’m using them at bedtime and the prescribed way, I guess, for now I will continue them in an effort to rid myself of the inflammation. It’s basically a cancer preventative and right now I’m not willing to take any chances. I realize after reading some of these stories that I’ve been very fortunate to have not had any flares for many years. I attributed much of that success to using the specific carbohydrate diet (SCD) For a number of years. I found it interesting that my seemingly well informed gastroenterologist does not believe that diet has much to do with IBD. But then he doesn’t think stress is a factor either, which I know is false

[Jimbow1982]

Hi, I have active left side colitis and I got told to come off the rectal meds as I was on them to long ( over( 2 years), as soon as I come of them my stool become normal and symptoms slowly fizzled away. I still take mesasaline oral twice a day as maintenance drug. But they shouldn’t scare you with the cancer word , As long as your getting colonoscopy’s done every year or 2 to monitor your insides, a polyp can takes years and years to grow into a tumor and they normally scrape them out during colonoscopy if I’m not mistaken?.