Struggling, should I try stronger medications?

Hi, newbie here. I posted a thread about working out and using prednisone a couple days ago, some of you might remember. This is gonna be long post, sorry about that, I hope you do read it :(

What I'm trying to do and how; I was trying to taper my prednisone usage to maximize my workout benefits. Went as low as 5 mgs a day which seemed to increase my symptoms. Also trying to go Gluten-Free but people tell me that it's impossible, that it's even in the meat I eat because of how people feed their cattle and chicken. I also use rectal medications(Salofalk suppsitory) which seemed to help with my urgency problem.

Symptoms: I use the bathroom around 4-6 times a day, stool is not solid. Color is mostly a mix of light brown and orange so I don't know if I have bleeding or not. Only once of twice in the last two weeks I saw some blood in my stool. Is it possible for blood to be "hidden" in the stool so to speak? Did I keep bleeding the whole time? I also have some abdominal pain that comes and goes. AFAIK, there is no mucus.

Diet: It's simple, my dinner is mostly unchanged; around 400-500 grams of chicken breast, cooked with butter and a banana. I have my dinner after working out which is around 9:30pm. I drink 3 glasses of protein shake(Optimum Nutrition, Gold Standard Whey, chocolate, I add some sugar in it and mix it with water), once in the morning after I wake up, once three hours before my workout and once right after workout and before dinner. I don't have breakfast just eat a banana after drinking my protein shake. Cooks in my workplace prepare a lunch that consists of a soup and a main meal. I leave the soup and anything with gluten(if there is any). They don't seem to use too much spice, I don't nitpick about the rest, just eat it. They cook something different everyday so I don't know if it effects me. I also use 2xa day L-Glutamine(tablets) and 1x a day Fish Oil(softgels) supplements. Haven't tried probiotics but planning to in the coming days.

Doctor: My doctor is far away so we can't communicate much. I see him once in every 6 months or sometimes a year. 5 years passed since diagnosis. I called him today and told him that I'm trying to lower my prednisone dosage, stop completely if I can(been using it for around 4 years). Told him I got it down to 5 mgs and started going to bathroom more, he said; "It's time we give you a Humira shot." Should I be afraid? I haven't been a good patient till recently, I wasn't careful about what I ate, I never took my meds diligently. Now I'm trying to be careful and use my meds but it doesn't seem to get me in remission; I can't get rid of prednisone, it's been a long time and it's affecting me badly these days, I can't gather my attention on anything, I can't read or study efficently. Next time I see my doctor will be around two months later, should I give Imuran another shot in that time? I didn't use it for a long time and even when I did, I didn't do it very carefully, I wasn't very concerned about missing my doses, I was an idiot. Is Humira a dangerous drug? I'm afraid.

(I added a subject)

Post Edited By Moderator (iPoop) : 5/8/2016 3:41:13 PM (GMT-6)

I'm more afraid that this too, won't work... I'm more afraid of the surgery I suppose. I want to try everything that is left to try. Like probiotics, I don't know if this Gluten-free diet works at all :(

get off the pred now
stay 100% GF for 90 days
quit focusing on working out and put more focus on getting better
try to talk to your doctor sooner

What about going dairy free
Use Honey in place of sugar for your protein shakes
Try Kefir drink its been really good at soothing my colon and cutting down my trips to the bathroom
Maybe Salofalk enimas instead?

If you've been on Pred for four years, I don't think there's anything in IBD treatment you should be afraid of. Long-term steroid usage practically guarantees some nasty side effects for everyone. If you've escaped so far, you've been lucky. I wouldn't press that luck.

The biological medications (Humira, Remicade, etc) used for UC actually have a very low rate of serious side effects. They also have varying degrees of efficacy. Remicade has the best statistics for inducing remission, but more people develop allergic responses to the mouse proteins in it than to the human proteins in Humira.

You may have success with dietary limitations. They never made a bit of difference for me, but it's good to try whatever you think may help.

I'd suggest you get an appointment with your GI or get a new one. You should have a discussion with that doctor about getting off pred as quickly as possible and whether you're taking the right rectal meds and what steroid sparing medication you should try (immuran perhaps). You should also ask about taking oral mesalamine, as it is effective if you tolerate it well. This should be your highest priority. You do have to take your medication regularly, however.

As for gluten, there's no gluten in meat, other than some processed foods--sausages, etc. I'd also ditch the sports drinks/mix.

You can tinker around the edges of your UC with probiotics, supplements, etc. Many of us do, but in truth you should be using medication to get you to a stable remission and then see from there.

I would be sceptical of any claims that cattle has gluten in it--the protein in the grains fed to cattle are digested by the cattle and turned into cow protein--in much the same way we might eat chicken but are not made up of chicken proteins. Cows digest the grain they are fed, breaking the protein into amino acids and then reconfiguring those amino acids into cow protein. Even celiacs comfortably eat meat.

If the protein shakes don't bother you, no reason to discontinue, but I do think they are best avoided by people with digestive troubles. Many have fillers and thickeners that cause people with UC problems. And most of us get plenty of protein from our diets. I also figure the healthier the diet, the better for your microbiome and for you.

Which probiotics will agree with you is a very individualised issue, unfortunately, as are supplements. For priobiotics, it's really trial and error. I do well with homemade yogurt and kefir. Never saw any benefit with store bought probiotics. As for supplements, many do well with curcumin, which has the benefit of being shown to be effective in tests.

Good to hear you're on salofalk. Sounds like you do need to see a GI to consider other options, if it isn't keeping you remission. I do think your highest priority should be getting an appointment with a GI and getting off of prednisone and onto a maintenance medication with fewer side effects.

You can do all the dietary changes you want and it guarantees you nothing. It's not a proven link. There are people who manage with diet, and others who have tried many diets and had zero response. You need to figure out which one you are. If diet gets you to 50%, in my opinion, that's not enough benefit for you to continue living at 50% permanently to avoid medication. Med free is a thought everyone with UC has, it's the dream, but from my experience reading here, I'd say the likelihood is very low for the majority of UCers who have inflammation beyond the mild/moderate range.

I had surgery and I am now med free. I wouldn't fear surgery if I were you, I would fear the consequences of long-term prednisone use. Surgery has given me the dream. I am now free of meds and I eat whatever I want. My quality of life has continued to improve since take-down, and still continues to improve, but since my final surgery, I've consistently lived so much better than I did with UC.

As for you, you have medical options, so I would explore them. Get another opinion, find a responsive GI (preferably a IBD specialist). Working with someone who is absent is impossible with a chronic illness.

I was on Pred for just 2 months and my GI wanted me off it ASAP.