How do you ever get used to it?

Hi, I am just looking for other people's experiences on how you came to terms with the disease when first diagnosed.

I was put put on Salofalk granules (they made me get bad acid reflux), I had then been switched onto Octasa as a second option (still flaring bad), so now I am on a strong dose of steroids, salofalk foam enema, octasa & vitiman D. The questions I really want to know about your experience is ....

What got you into remission/ how many attempts did it take to get there?
How severe were your symptoms/ what was the extent of your symptoms?
What did you find outside of medication that helped the healing process? (I am up for trying anything to help push this along if possible)

I know everyone is different and it is all trial and error by the sounds of it but I would really appreciate the feedback just out of interest. Thank you. Kerry.

Hi Kez, welcome to the forum.

Like you said, everyone is different. Some people get diagnosed, take medication and dont have a flare for years and when they do, they are quickly put on a medication that works and they go right back into remission. others like me, have been in a flare for many months even years. the main problem is most medication take 8+ weeks to determine if they are going to work so you are often stuck on a medication for months before figuring out it wont work.

as for home remedies outside of medication:
1) watch what you eat. think of the foods/drinks that normally set off your stomach. certainly avoid those and then figure out over the course of trial and error what else sets you off. avoid those foods.
2) also be proactive and not reactive. plan out longer drives/days out. make sure you identify places you can stop at if needed and where bathrooms are at places you're at. that way if you have the urge to use the bathroom, you can quickly get there.
3) try to stay active and make sure your blood level doesnt get too low. people with UC also seem to have low Vitamin D. talk to your doctor, he/she should be having blood work done throughout your flare to determine if you need iron supplements and/or vitamin d.
4) Dont be afraid to tell people close to you. in many ways, this is an embarrassing disease to talk about it, i know i had problems telling extended family/friends. however, the more people around you that know about it and are there for you, the better.

hope this helps and i wish you the best of luck.

Hi,

Well I am one who has gotten used to it and I survive fine BUT my symptoms were never diarrhea or urgency (I tend towards constipation). The first flare I was given rectal suppositories and that worked like a charm and cleared up for 8 years. No meds, no special diets, no consideration at all. Just 8 years of remission.

This time around I decided to try and tackle it without going to the doctor. I tried several different diets, oregano oil, wormwood combination, many many different things. I was under the impression that it was some sort of bacterial imbalance or food allergy or parasite infection.....whatvever. Anything but UC.

My symptoms were tolerable though, as I only had up to 4-5 BM's on any given morning. They were by this time pretty mucousy and sometimes had streaks of blood. I did these experiments for 30-60 days at a time, one after the other, for about a year.

At some point after that, my symptoms degraded to the point where the blood was the primary symptom and the mucous seemed pretty strange (shapes and colors were bizarre) I've never seen anyone describe the things I was seeing in the toilet. Strange smells, too. Unacceptable.

And in in hindsight what I did there was very DUMB. Finally I went to see the same GI who'd diagnosed the proctitis that first time and he did a colonoscopy and found UC (though he called it unknown etiology) and prescribed Pentasa. I asked him to also add the rectal meds and he did so (because of this board).

I think if I would have gone in immediately when symptoms returned, maybe it wouldn't have spread? no way of knowing. But this time the symptoms were stubborn. After 3 months of not getting anywhere I switched to a new GI . She had a much better understanding of this disease and also a much better bedside manner, lol.

She upped my oral meds and I'd been on the rectals as well......so after about 4-5 months on these meds combined with the other things in my signature line----I was finally able to get into remission. I believe it took ALL of the things in my signature line though.

Initially she had wanted me on either Uceris or 6mp and I chose to just stay with the Pentasa and rectal mesalamine. I also followed (very diligently) an anti-inflammatory diet. Daily ginger tea.

Excellent set of probiotics , which I took care to create a good gut environment for by way of adding lots of different fibers and prebiotics. I wanted them to colonize and not just be washed out every day.

I changed everything about what went into my digestive system. I had a few scares about the meds, but after doubling my daily water intake that worked out ok.

In the very beginning of this I also took digestive enzymes with every meal, but I had evidence of things not getting properly digested (little chunks of carrot or nuts) as this occurred, I also eliminated anything like that from my diet and switched to a low residue one for several months.

I tried to insure that everything passing through my colon was SOFT. I was told these things weren't necessary and I did them anyway. Instinct told me to. I also took collagen powder and glutamine (to help heal intestines).

I think sometimes we need to listen to instinct and pay attention our bodies....there IS feedback there, we need to tune into it. This disease is so variable person to person.....so it's essential to pay attention to things.

It took a full 4 months to reach the point where symptoms stopped. But they did. I had a new colonoscopy in June and it showed "quiescent IBD" and just a little bit of residual inflammation spreading just into the sigmoid..

The fact that it has gone into my sigmoid though makes me wonder if the spreading is due to all that time I took between first seeing symptoms and going in?

I am stubborn. I didn't want this to be my outcome but I found you can't simply will this condition away. Everything in my sig line helped get me into remission and now that I am here I am having a tough time deciding what I should keep doing "forever".

The mesalamine isn't causing any side effects for me now and it is a powerful anti-inflammatory, so I feel it should stay in my arsenal......I make my own probiotics, so I am debating on continuing the store bought ones (but I swear when I added the Advanced Gut Health brand is when I felt a shift towards getting better). I am scared to stop those.

Not all probiotics seemed to work either. I went through 4 brands before I found one that I believed worked. And I can't even tell you WHY I believe this, but I do.

Anyway yes......I am used to this condition now. I have had a Prometheus test run (to rule out Crohn's since it runs in my family) and it came back very conclusive for UC. I see the genetic connections with my own eyes. No doubts anymore.

I will always be very careful with my diet now, as I don't believe my diet CAUSES UC but it sure can help me to cultivate a decent environment for my "good bacteria" and I believe the bacteria make up the immune system.

I believe prior to all these changes, I was creating a better environment for the "bad pathogenic bacteria". Dysbiosis seems to be at the root of MY ulcerative colitis.

I also curb stress in my life now. I have let go of a few toxic family members as a part of this self created program. I mean.....why make all these positive changes and then allow a few toxic individuals to undo all my peace in a matter of minutes? nope. Not going to happen on MY watch anymore ;-)

I am taking responsibility for myself as a whole now.......and I do feel powerful and effective. I am changing my exercises routines around to a more gentle set ---no more self abuse there these days either.

My whole attitude about things has changed, and I believe life experiences do arrive on purpose to teach us things about ourselves and about life. Well, that has always been the case in my own existence anyway. I can't speak for others.

I am sure there are plenty of folks who may think that assessment is crazy, too, and that's ok. But I know from my own personal standpoint that many of the changes that affect my IBD are psychological in nature. And I also know this may not be true for EVERYONE.

And also if a doctor had told me this, as opposed to discovering it on my own, I may have been pissed off? anyway.......I just wanted to write a short post. It got away from me . I am not going to be posting much anymore....so I guess this can be my swan song, lol

EDIT: also during this time I found out my vitamin D was very low. I suspect this *might have* been a part of my underlying problem and always think folks with IBD should be tested. I read an article that suggested we should shoot for the "upper range" of normal, too.

Good luck, OP.....there are many perfectly fine outcomes with this......but maybe you won't see them because people who feel like a million bucks aren't posting as regularly? that's a shame in a way......because there are so so many new people here that they deserve to be exposed to ALL sorts of outcomes.....you know?