HealingWell
Search Close Search
☰

Ulcerative Colitis and Options

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/2/2016 2:15 PM (GMT 0)
Hi everyone,

I was diagnosed with lower left UC and even just proctitis 2 years ago. During my pregnancy, I flared badly and was even admitted to the hospital. I was put on prednisone and even IVed steroids. My flare got better but I looked and felt horrible (joint pain, swelling etc). I stopped taking steroids (tapered) in August to flare again in October. In December, I found out that the steroids gave me a bilateral AVN--messed up my hips. Luckily I was already tapered to 5 mg of prednisone and just got off it but prednisone was no longer an option. As soon as I quit prednisone, I flared. My doc then gave me Humira which didn't work as I ended up hospitalized for a week. I then got Remicaide in the hospital which seems to have worked a little bit but not enough--(just finished my 3rd dose). My doc is now saying that maybe we can try Entyvio but he really thinks I need to have my colon out. Are there no other options? I've tried diet and vitamins to no avail. Could post-pregnancy horomones be playing a role? Is there anything I can do to make me better? I'm so scared but in so much pain and afraid to leave the house as I have no control....
Posted 3/2/2016 2:36 PM (GMT 0)
Welcome. Sorry to hear things have been going so rough.

If you've gotten a response on remicade then I'd give it longer. You just had your 3rd dose. I'd wait at least until your 4th dose. Maybe suggest doing that 4th dose sooner and perhaps a double-dose (10mgs per kilogram instead of 5).

Entvyio is a very slow working medication, expect 11-14 weeks for a response, should you take that route.

Surgery is just another treatment, not something to be afraid of. I'm not sure that you're there yet, but it is something you might need someday.
Posted 3/2/2016 2:57 PM (GMT 0)
hey there victorias - what other drugs have you been on besides the ones you mentioned ? most folks are on some kind of maintenance treatment, usually mesalamine oral & rectal -
Posted 3/2/2016 3:10 PM (GMT 0)
I'm on Lialda x4 (1.2 G) in the AM. I was taking VSL but stopped a few days ago because it was giving me unbearable gas during this flare (as it hadn't before). It seems all pills really aggravate me with this flare. I'm also on bentyl and I've been taking 2 Percasets per day for my stomach pain but I had to beg my doc for the script because he doesn't believe in narcotics and says if I'm in that much pain the colon should come out. I have really bad cramps as well as that empty stomach gas-ie feeling you get when you don't eat.
Posted 3/2/2016 3:23 PM (GMT 0)
geez, what's with these docs pushing the knife ! i'd tell the guy to take a hike if he is that much of a jerk -
Posted 3/2/2016 3:32 PM (GMT 0)
I won't start a surgery argument here but we all need to face the fact that surgery may be the only thing that frees some of us from UC. I would certainly give some of the other biologics a try before going that route. After a year of reading this site, I've seen many people who have not had success on one biologic, to find another that worked for them. I wish you luck. I would at least begin researching surgeons so you are not forced into a hasty decision, if, God forbid, you are unable to regain control of your symptoms.
Posted 3/2/2016 5:34 PM (GMT 0)
I think I would try Imuran or 6mp.
Posted 3/2/2016 5:44 PM (GMT 0)
If you're really dead set against surgery right now then give the Entyvio a shot. You can also inquire about cyclosporine.

I was in your position at one time. My advice to you at the very least is to go have a surgery consult with a colorectal surgeon. It's always best to be prepared and get all the facts and information you need. It doesn't mean you have to commit to anything . Best of luck.
Posted 3/2/2016 6:48 PM (GMT 0)
Per your advice, I scheduled a consult with a surgeon for Tuesday. The surgeon at the hospital told me that post surgery I'd still go to the bathroom 6 to 10 times a day and there's a 10% chance that I won't be able to get rid of the bag? Is this true or was he just not a great surgeon?

I'm seeing my GI today and have an appointment for a second opinion but not for 3 weeks :( Are any of you on painkillers like Percaset? I don't think I'd make it through the day without it but I had to beg my GI for a script and even still he only gave me enough to take 1 a day even though I told him I take 2. It doesn't get me high and it doesn't even get rid of all the pain but it cuts down on my bowel movements and makes the pain manageable (generally). He says that if you need Percaset, you need to have your colon out. I don't know maybe I'm not adjusting because it all happened so fast but isn't a few Percaset better than removing your whole colon?

Anyone heard of IVIG as an option? My sister's father in law uses it and it saved his life but for some rare disease not at all related to IBD.
Posted 3/2/2016 8:03 PM (GMT 0)
Good on the consultation. Learn what you can and prepare some questions to ask, just in case you might need it. It's always preferable to keep your large intestine, when you can control uc through medicational treatments. Not everyone can though.

No one can promise a certain surgical outcome, a lot of variables. In general, a good outcome is 4-6 bms a day for a typical j-pouch patient after surgery. Emptying is quick, often done when you pee. There's no urgency (with uc urgency is the biggest problem), you can hold it for 1/2 to an hour or more. The majority have good outcomes, but some do have bad outcomes.

One wouldn't get a j-pouch, if they aren't a candidate for one. I'm no expert but they'd generally not if you had crohn's disease not uc.

We have some j-pouch patients who hangout here, there's also the healingwell ostomies forum and also j-pouch.org as resources to ask whatever you want.
Posted 3/2/2016 8:15 PM (GMT 0)
IVIG has been tried for uc, there's some threads on it, if you search. It's not common. A few have had luck with it.

You've still got options left (waiting remicade out longer, entvyio, cyclosporine, possibly IVIG) know them and decide what you're willing to try. Do your homework and decide what you want.
Posted 3/2/2016 8:36 PM (GMT 0)

VictoriaS said...
Per your advice, I scheduled a consult with a surgeon for Tuesday. The surgeon at the hospital told me that post surgery I'd still go to the bathroom 6 to 10 times a day and there's a 10% chance that I won't be able to get rid of the bag? Is this true or was he just not a great surgeon?

I'm seeing my GI today and have an appointment for a second opinion but not for 3 weeks :( Are any of you on painkillers like Percaset? I don't think I'd make it through the day without it but I had to beg my GI for a script and even still he only gave me enough to take 1 a day even though I told him I take 2. It doesn't get me high and it doesn't even get rid of all the pain but it cuts down on my bowel movements and makes the pain manageable (generally). He says that if you need Percaset, you need to have your colon out. I don't know maybe I'm not adjusting because it all happened so fast but isn't a few Percaset better than removing your whole colon?

Anyone heard of IVIG as an option? My sister's father in law uses it and it saved his life but for some rare disease not at all related to IBD.

I go to the bathroom 4-6x a day with my j pouch. The average is anywhere from 4-10x a day. Keep in mind though it's not like going to the bathroom with a sick colon. There's no pain or urgency. You just sit and go. There's a lot of info on the procedure that you would need to research. Asks lots of questions at the consult. Ideally you want a surgeon who has done many j pouches. And yes, there is always a small chance you could end up with an ostomy if they couldn't make the j pouch. It's a tough surgery(s).....I won't lie, but I can tell you I would absolutely do it over again.

There's a member here that does IVIG. I can't remember the username. Maybe start a new topic on it to see if you can some responses for it.
Posted 3/2/2016 9:13 PM (GMT 0)
Hope you find the surgical consult informative. Similar to Marianne, I am a happy j-poucher. I'm three months out from the final step and sleep through the night, go approximately 5 times a day (really whenever I go to the bathroom to pee), no meds, no pain or urgency. Tough surgeries to get through but well worth it in my opinion. Search around for an experienced jpouch surgeon at a well-regarded hospital you like and trust. Good luck.
Posted 3/2/2016 11:54 PM (GMT 0)
I'll comment on the percocet. I switched GI docs about 15 months ago and he is a research/academic doc for IBD. I asked if he did pain control management and he said no but referred me to a counseling clinic intended for IBD patients. I had been taking percocet for about about six months for non-GI related pain but it was very helpful for the cramping I had. My doc would rather treat the inflammation or IBS with appropriate meds than rx opioids and wants to avoid narcotic bowel syndrome. I disagree with his statement that if you need percocet, you need your colon removed. When I flare, my cramps are vicious. They are in fact my worse symptom so I most definitely understand.

Hang in there a little longer with the remicade if you can. I had immediate result but others saw it take a year for remission. If you're not ready for surgery and are willing to try new drugs, NSSG made a good suggestion to add imuran/6mp. I was considering surgery about a year ago and sat down with my new GI doc to discuss. I chose to wait after hearing the stats for complications. I believe pouchitis is 20% and disease of the new j-pouch was about 10%. I'm not positive with these stats, I just know that the numbers he gave me were too high for my comfort. I work in healthcare and had researched a great deal.
Posted 3/3/2016 12:00 AM (GMT 0)

VictoriaS said...
Per your advice, I scheduled a consult with a surgeon for Tuesday. The surgeon at the hospital told me that post surgery I'd still go to the bathroom 6 to 10 times a day and there's a 10% chance that I won't be able to get rid of the bag? Is this true or was he just not a great surgeon?

I'm seeing my GI today and have an appointment for a second opinion but not for 3 weeks :( Are any of you on painkillers like Percaset? I don't think I'd make it through the day without it but I had to beg my GI for a script and even still he only gave me enough to take 1 a day even though I told him I take 2. It doesn't get me high and it doesn't even get rid of all the pain but it cuts down on my bowel movements and makes the pain manageable (generally). He says that if you need Percaset, you need to have your colon out. I don't know maybe I'm not adjusting because it all happened so fast but isn't a few Percaset better than removing your whole colon?

Anyone heard of IVIG as an option? My sister's father in law uses it and it saved his life but for some rare disease not at all related to IBD.

There is a user here who uses IVIG and has for quite some time. Her name is "U B Tough". you can look her up in the search bar on the top-right. The problem with IVIG, is that it's not approved for UC and it's extremely expensive. I asked my GI about it and she basically said it wouldn't be covered. The user here is from Canada, I am not sure how coverage works up there, but here in the US, it's hard to get insurance to pay for things that are not within the realm of treatment for the condition you're treating...

As for taking pain meds, I can see taking them for a few days or a week, but beyond that, there are dependency issues. It's really not the right route to managing inflammation. It's basically making it so you can ignore the root issue (the inflammation). It slows the bowels but it doesn't provide any healing of the condition. Perhaps you could try a antispasmodic, like lomotil or bentyl? Those are very commonly prescribed for UCers and can help with pain.

I also had surgery and I love being done with UC. I go more often than I did, but I too go when I pee. It's not any more trips to the bathroom than I had when I was healthy, I just empty the pouch when I am in there usually. I had my surgery in 3 steps so it took a little longer but I am thankful I did it. I can't imagine worrying about meds and doctors appointments at this stage. That stuff was way too stressful and expensive.

They say the #1 predictor in a successful surgical outcome is the surgeon. The more pouches they've created the better. That should be your #1 question at the consult. Also, do not use a general surgeon, definitely want a ColoRectal .The consult also doesn't lock you into something. I think it's great that you're going and getting some info.
✚ New Topic ✚ Reply