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Hi guys, i was diagnosed with chrones disease late last year after randomly experiencing stomach aches, gut pains, constipation, extremely painful bowels after going to the bathroom, and multiple bathroom trips, after having various tests done and colonoscopy performed my lower bowel was showing signs of inflamation. I could barely make it through a day without having to take a dose of painkillers. Anyway, my fecal test came back as quite inflamed and i was straight away put on pentasa, 2-4grams per day, that did nothing, eventually the pain became so bad i was admitted to hospital..

While in hospital i had various tests done all came back fine but the pain was still constant in my lower stomach around my naval area, the gastro at the hospital started me on 30mg of prednisilone PD and after about 3 days the pain went away and i felt fantastic. I tapered the steroid down as instructed 5mg per week till i was off, last few days ive been taking a very tiny amount but out of nowhere, the pain is starting to come back to where it was prior to being in hospital, i am trying urgently to get appts with the specalists but this corona virus going on is making it  extremely difficult, im not sure why the pain started coming back and i feel extremely down. Everything was going so well. Gets quite sore after going to the bathroom and using my bowels , lying down etc. Until i can get in and see the specalist, what suggestions can i do? Im still new to being diagnosed with chrones but boy has it been a rough ride.
Thanks for any help.

Reply posted for jefferson.

Unfortunately, for most people "under control" only lasts as long as you are taking the drug.  Which I am now, but will start tapering off soon.  I really dread it, and am hoping that once there is vaccine for COVID19 and I can travel again that I can get prescription for steroid for 2-3 weeks.  

Reply posted for jefferson.

This is what I am dreading, as I am now taking butesonide (sp?) for my microcolitis pain and early a.m. liquid diarrhea.  It is working well, but I am tapering off gradually and wonder what will happen at the end?  If the one a day works well, can I continue--I am 83 next month, so my long term life expectancy isn't that great.  I just want to live it out without pain and embarrassment.

Reply posted for jefferson.

Jefferson:
I know exactly what you're going through! I developed Crohn's (not chrones;-) about 6 months ago. Did the fecal test and colonoscopy (like you), and here we are. My GI doc prescriped Mesalamine. I've take it for a month..it's not working. The reactions from people taking Remicade sound absolutely frightening. Don't know about Humira. I can't eat anything anymore without diarrhea for hours on end. Know what I had for breakfast this morning? Two Bloody Mary's! The fact that you had enough pain to send you to the hospital makes me wonder if you have "leaky gut." Basically where your food is getting out of the gut and into the body. Hang in there! And join the rest of us...looking for any kind remission to make this disease bearable.

Reply posted for jefferson.

It can be a miserable thing-sorry you are having issues.

I have been diagnosed with Colitis since 2001, and the pain of movements can be quite intense.  The experience I have had with meds is limited compared with many of the posters, pretty much steroids and Asacol.

The first time I flared, it took me a year to beat it back, eating no sugar and practically no carbs at all-medicine has come a long way since 2000.

After antibiotics last year it came back full blown with the pain, brown water and all the bathroom trips....

I did try Apriso, but after several weeks it felt like "sandpaper in my guts"--no more Apriso. 

I can't tell you with a 'medical opinion' what got me better, but I am better and in remission after 9 months.

I researched a lot of things, of those I tried butyrate supplements. The studies on it are pretty interesting and can be easily researched. I noticed within 2-3 weeks that I was making progress by degrees. Slow but definite progress.

About 2 months ago, all my symptoms completely shut down in a 2 week time frame. I had not made any additional changes in regards to my colitis diet or any of my supplements.

When I went back to 'what had changed', there was only one thing. A DNA test told me I had a slightly elevated risk for Macular degeneration, so I started taking what my eye doctor recommended-Lutein and Zeaxanthin. I did a Google search to see if there were studies with Ulcerative Colitis and Lutein and Zeaxanthin, there were.  The studies look like they help with bowel issues.

This isn't a recommendation that you try it, however it is easily researched. My experience is mine and I can only say that my issues did a complete shutdown in a couple weeks. No pain, no brown water, no mucus, no blood. 

Reply posted for jefferson.

bump

anyone?

Reply posted for jefferson.

Any input from the folks here?
seems like its starting to go back to how it was prior to being put on pred and getting the inflamation under control.

getting stomach aces, pain in lower stomach after going to the bathroom and appetiete has gone down.