Angry Colon said...
Thank you for your reply! While uninsured, I paid out of pocket for past procedures and meds related to my UC. I had my last really bad flare in early 2012, and that's when I first tried Prednisone along with hydrocortisone enemas and Lialda. The Prednisone is what really helped, and I stayed on the Lialda (400 mg/day) for about 6 months until I felt like all of my hair was going to fall out! At first I thought the hair loss was due to the Prednisone, but it kept falling out for months after tapering off. Anyway, I stayed completely symptom-free until May 2015 when I started to see blood in my stool again. The Colocort enemas are just hydrocortisone enemas, and they're 100 mg, and they seem to help a little with the bleeding, but not very much. I'm taking 400mg/day of Lialda again, but they don't seem to be making any difference.
I understand what you're saying about the 6MP's being less scary than they sound, and you're right, my choices are slim, but if I can't take them with TB anyway, then my choices are even slimmer. I also hear you about the diet changes... I guess it's just wishful thinking, but I will be making changes regardless. I'm so happy that your surgery was successful! That really is awesome. I've entertained the thought of surgery, but that is a whole different level of scary for me! How would you say the surgery has affected your daily life besides being symptom and med-free (which is huge, I know)? Because of my pseudopolyps and the fact that they're still there when I'm not flaring making it difficult for a colonoscopy to show other problems- I've often wondered if surgery is going to be a necessity anyway.
One more thing, I see in your signature that you battle migraines as well. Do you take anything for them? I asked my GI about the affect Imitrex could be having on my UC, and he immediately said he didn't think that would cause flaring. I'm still not convinced of that, because that is really the only thing that changed when I got medical insurance and started taking it for my migraines. I'm otherwise very careful about what I take for any ache or pain do to my UC.
I haven't been dealing with migraines too much lately. I had them a lot when I took hormonal birth control pills. Especially pills with estrogen. it was always like a crash when I was between pill packs. Now I use progestin only pills and I've done much better.
I think it's easy to find links in everything and think it's related to your IBD. I went through SO many things, I always blamed something, the food, depression, a parasite/bacteria, birth control, hormones, yeast... I know it could actually be one of these things making my condition worse, but in my case, nothing panned out. When my UC is bad, it's bad. I really didn't want to lose my colon. I tried everything I could, up until I got a terrible infection from my system being compromised from UC treatments and I ended up in the ICU. At that point, I had just about
had it. I had also nearly run through all the treatment options.
I always had this picture of life after surgery, like it was going to be severely compromised because of toilet trips. It is different. I go to the bathroom a lot more. I was a once a day person before surgery, now I go probably 6 or 8 times a day. All of those times are at my choosing. No more rushing and wondering if I will make it. No more urgency and discomfort. Going to the bathroom after jpouch surgery is not like having a BM in the traditional sense. It's more like emptying a pouch. You just release the muscle and it comes out, no straining involved, no waiting... I don't want to paint this perfect picture either, as I said 6 or 8x a day is a lot!! For me, it has been a great improvement. Since surgery, I've been able to do whatever I want. I am only 6 weeks out from the reconnection - hopefully I can continue to improve. Hopefully I make less trips to the bathroom as I get used to having a j-pouch. It takes time. I wouldn't have done it if there was any hope for a long term remission but I was flaring up every year to every other year and the flare ups lasted a year. They were basically uncontrollable. I spent more time sick than healthy. Now I wake up, go to the bathroom once, have breakfast, go to the park for 2 hours and hike without worry. I don't take any mediation either, not a single pill
That's probably the biggest shift for me. I was taking 17 pills at one point, plus I spent tons on those pills.
I think everyone loses some hair when they start taking mesalamine. if you can stick it out, it should stop shedding and grow back normally. When I started it, I seriously thought i was going to go bald. I have TONNES of hair though, no one else could tell. I was losing it in clumps. Eventually it grew back and I had normal hair while taking 4800mg. Each tablet of lialda is 1200mg. Asacol makes a 400mg. You really need 4800mg orally + rectal to get a flare up managed. That can work for people who respond - others have no response.