Hi everyone, my name is Sara, and my mom has just been diagnosed with UC. She had a colonoscopy 2 weeks ago, and she was put on Asacol that same day. Things have gotten really bad since that day and now she can’t even keep the soup from the intro diet in her. She has a lot of blood and mucus and pains like contractions where she feels like she wants to bear down and push. I’m so worried about her because she is so weak, her stomach hurts so bad too. I’m almost wondering if the Asacol has caused a bad reaction because it’s just got worse since she started the pills. The doctor uppered her to another Asacol pill yesterday and then last night she suffered really bad, she was up almost every hour! Do you think it’s a bad idea to take her off the pills and just try the diet? I don’t want to mess with her meds but I just feel like the doctor will just say she needs surgery. He said that she shouldn’t still be bleeding with the Asacol but she definite ly is. She’s also on stool softener, doesn’t that seem crazy too? I feel like the stool softener would just make things go through her faster!
Maybe I’m just at the point of looking into it too much. Any feedback is appreciated SO SO MUCH!( I have the book Breaking the Vicious Cycle, and we are following that.) thank you Adam for making this website!
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Sounds like your mom is allergic to Asacol. I went through the same thing when my butthole (no pun intended; and butthole is being nice) of a GI doctor first started me on it.
I think the thing to do right now is get your mom back to the doctor right away and tell them the Asacol is not working. Your mom might need steroids right away to get this under control and then work the SCD diet into it. She sounds like she is sick enough that you don’t want to play around with anything right now because if it goes on too long, she could lose her colon.
Thank you very much for the replies. Last night wasn’t AS bad, and she didn’t take her night asacol. I Know it’s bad that we didn’t take that pill but I just felt like they were slowly making her worse.
Paul, are you on any meds? Sorry I don’t know all of your back stories.
Jamie, what medication did you go on after Asacol and how are you now?
After Asacol, I was on Prednisone for a while. I honestly went through medicine after medicine, being allergic to them all, and then steroids stopped working. Long story short, (if you want to hear the full version, I’ll email it to you) I now have an ileostomy. My GI doctor was a moron (even tho he’s supposed to be one of the best in town) that I finally cussed him out and washed my hands of him. He basically used me as a guniea pig, giving me any medicine.
My wife and I been through hell with the same thing. She should only have been on the prednisone and asacol for a month. And then she should have been taken off the prednisone and kept on the asacol. The prednisone steroid you want to get her off asap because you don’t want her body to get use to it. The asacol she might have to take for the rest of her life but after 4 months the frequent bathroom usage should decrease. My wife takes asacol and was still having pains and feeling drained until I read up on this pill called omega xL. Its an all natural pill made of fish oil. It helps improve your body and its functions. Skin color, hair, bones all will be restored. It is an anti inflammation pill to keep your moms colon or intestines from flaring up, but all natural! No side effects at all. I wont promote this damn thing if it didn’t work believe me. I can only imagine what you and your mom are going through. I know how it it is because I felt so helpless and doctors dont have a cure for this or even know what causes it. Don’t let them do any surgery!!!! Your mom will regret it later. Tell her be patient and you should be patient with her as well, I know its hell on you but be strong!!!! If you get the omega xl she can take it with her asacol. I guarantee you in a matter of 2weeks you and your mom will see and feel the difference. Take them with the asacol and as directed when they send you the Pills. Remember no surgery!!!! Your mom can be perfectly healthy again trust me. This disease is more common in the middle east thats why they don’t know how to help you here, their only option is to cut it out and replace it with a bag, thats b.s. Look it up and all its potential capabilities, It’s called Omega XL. It’s like 50 bucks but believe me its worth it. May god bless you and your mother. I have been where your at, I wish you the best.
When I started medication, they put me on a combination of Asacol and Prednisone. I would say that the prednisone (the steroid) is VERY important in the beginning to get the swelling under control. Have her ask her doctor about that, in addition to an alternative for Asacol, which obviously isn’t working for her.
Kimberly, how did the Prednisone work for you? I have been reading about it tonight, is it a long term medication? I guess anything is better than her having surgery! Today she was better, she didn’t take the asacol, and still was having bloody stools but wasn’t as drained and in as much pain. She stayed with the soup and beef patties and if it’s still bad tomorrow night i’m going to get her to the doctor again. Thanks for the response!
Yesterday was a great day for my mom! She finally had a bit of relief. Small steps right? Waking up twice in the night is better than 10 times! She is seeing less blood and is able to keep the soup and juice in her longer than 15 mins. She is not taking any pills for it right now because they were honestly killing her. She says she feels better not being on asacol. I think we will talk to her doctor next week but for now, things are looking up!
Hi. Did they test for c. difficile?
Maybe if she’s getting better it isn’t an issue. But it is a nasty thing and “only” requires a stool sample and lab work.
I hope things get better for her!!
I have UC-got it about 27 years ago when i was 24- im now 51- i am so sorry for your mom-there is a lot of information out there for you to catch up on-i found this site the other day and really like it. Unfortunately UC and its sister diseases do not have cures. although UC does have a surgical cure. Thats because they dont know what causes it. there are medicines that can help you if your lucky go into remission and some that can help to hopefully keep you in remission. First your mom should have stool sample tests for cdiff and other bacterias that can mimic UC to rule them out. I once got campyolbacter from mexico that mimiced UC and we tested it over and over for about 3 weeks until it finnally showed up- and in 24 hours an antibiotic made it better! But i still have UC.
anyway once thats ruled out- there are meds for UC -and they dont stop the bleeding and mucus just cuz your taking them so that doesnt mean anything. i was on asacol – for many years and azulfadine for many years sometimes – do they help? i dont know but i take them in the trust that they must do something! but i was never given any kind of stool softener to take on an ongoing basis and never heard that before! except of course when i was prepping for a colonoscopy.
i would not reccomend bearing down even if she has that urge- it makes it worse-i have found relaxing a not sitting on the toilet long-not good on the hemrroids! better to run back and forth and but wipes for adults i never use paper much more soothing- and i gently push hemroids back in each time. there are other meds i am now on colazol and prednisone. there are rowasa enemas- cort enemas – newest treatments remicade. i am for the most part into natural treatments but i am a firm believer in integrated medicine. I found the scd diet in jan. which put me in remission in 3 weeks. but in may got a stomach flu and got my uc back still on the diet went back to its most basic and i only buy organic. i follow the diet very stictly. i love the food now. my dr. said my blood work is off the charts excellent so it keeps me healthy-everything i eat is filled with nutrients no empty calories. i finnally conceded to prednisone- i hope i wont be on it llong maybe the diet in combo with pred will kick in remission sooner- i also take probiotics, fish oil- and vit d. -have your mom read it up its empowering good luck!