Doctors told me if I don't respond to steroids, surgery is the only option.

I want to give a short bit of back story before I get to the main topic. I was diagnosed with Ulcerative Proctitis about 5 years ago. Usually my flares were mild and passed on their own. Only once before did I require prednisone to bring about remission. about a month ago I became very ill very quickly (within 12 hours it seemed). I started having green liquid stool and hours later was vomiting up green bile with horrible stomach cramps. I was admitted to the hospital for a week, fully diagnosed with UC, thankfully ruled out having Chrons. I started to improve on steroids and was sent home. For the three weeks at home, I was on 40 mg of pred. My bowel movements never really returned to normal (they were almost always liquid, but at least no blood). I wasn't vomiting and only had mild cramps when I need to have a bowel movement. I just figured it would take time. When I began to taper to 35 mg, I started getting sick again. I figured it was just my body adjusting, but after 5 days I started having frequent bowel movements again, vomiting, and blood. My doctor recommended me be admitted again.

The first day of being readmitted my GI team dropped the bombshell on me. "If steroids don't work, surgery is our only option". I was so shocked I didn't really ask any questions. Is this normal procedure? I've never even tried other meds, just pred and lialda. It seems extreme to me that they want to jump directly to removing my colon. To make matters worse, I suffer from anxiety with health related issues; so I've been a mess of nerves ever since they've told me this. I asked them again today about the surgery and they said "with acute flairs like yours, if they don't respond to steroids then surgery is usually the only option as meds like remicade take weeks to come into full effect".

I've been on IV steroids (20mg every 8 hours) for about 2 days now and I'm seeing little to no improvement. Granted my bowel movements have slowed some, and instead of being pure liquid, it's more of a dirt like consistency. I can't tell if there's blood because my stool is a blackish/purple color which could be the lialda. Anyway, I ate my first real meal today and ever since I've felt extremely sick. It's been nearly 10 hours since I ate my lunch and I still feel very sick to my stomach. So much so that I skipped dinner and I'm not sure I want to eat breakfest if it's going to make me feel like this. I'm terrified now that steroids aren't working and the only thing going through my mind is getting my colon removed. I guess I'm just looking for support and to see if this all sounds like normal procedure.

Edit: I tested negative for c.diff.

Post Edited (zarch) : 8/24/2016 8:40:44 PM (GMT-6)

We been told if symptoms not improving in steroids there is a strong possibility of C.diff infection. Hope your GI has done stool culture to rule out C.diff. Keep in mind it is very hard to get c.diff positive result even when it is the culprit.

Not sure what you had for lunch - Soft soothing easy to digest foods will get easily absorbed as the colon is inflamed and bleeding. In short it is less work for colon. Try to have homemade chicken soup or bone broth or have organic store brought ones as often as possible.

Sometimes giving colon rest helps to calm down symptoms .Being in hospital it is easy to do it as iv is there to support.

I feel it's too early to talk about surgery with out even trying the next level medications. Remember you have all the right to raise your disagreement to the dr's and ask for the next level meds to give a chance.

From our UC journey we learned that food plays a great role in controlling symptoms . Not the case for everyone. If meds not giving the benefits as you expect then keep a food/symptoms journal and eliminate the trigger foods.

Best wishes...

hey there zarch -

when were you tested - regardless, re-testing in your situation seems appropriate - the rate for false negatives is fairly high -

So sorry to hear of your situation. Yes it would be a shock to be told surgery is likely but I can see the rationale. If steroids can't touch your symptoms then UC meds won't either. But your symptoms sure do seem like an infectious source (non-doctor speaking) and C. dif can be hard to detect, maybe it's something else in gut bug family.

Although diet has helped me tremendously I doubt it can fix your current situation. But have you discussed an antibiotic treatment? Some people have benefitted from the triple antibiotic regimen (search the forum for past posts). Before surgery I'd take a stab at that, what could it hurt if your gut was going to be removed?

Just read your last post, Cipro made me sick in multiple ways (didn't take it for UC) but glad you are getting anti-b's and hope it helps.

Post Edited (imagardener2) : 8/24/2016 9:09:02 PM (GMT-6)

@notsosicklygirl

They are working on getting me to try remicade (running test to make sure I'm a canidate). But the GI doc said it would take weeks to go into full effect so there would be no use if steroids aren't working. They originally had me on Flagyl, but I cannot tolerate the antibiotic. I get extremely sick on it.

I'll be sure to do that. Thank you. I'll give remicade a chance, and my family and I want to get a second opinion before any surgery is done.

@iPoop,

The green vomit and stool occurred upon my first hospitalization. After about 2 days in the hospital it subsided. I was on antibiotics for those 2 days, but theytook me off when I tested negative for c.diff and other infections. I was tested again with this second hospitalization and I was negative again. I'm certainly willing to ask them to test again.

Please try FMT and LDN before any surgery.

If you go for either Cyclosporine or surgery then I'd make sure you are in a hospital that specializes in IBD treatments because those are some of the more advanced treatments and you want specialists for them.

Usually they are at the Teaching or University hospitals.

I would only say surgery is the only option people not responding to IV steroids IF the symptmes are so bad that there is not time to try this and that. Most folks have a little time to try a few things. SOme people do respond quicker to Remicade or anti-TNF

Since this sounds like infectious, the FMT is a good possibility

I would bet the antibiotic is making you nauseous - IV antibiotics always made me sick to my stomach.

good luck

I agree with previous posters. Get re-tested for cdiff and give remicade a chance. What they've told you about prednisone and surgery is nonsense. I had immediate results with remicade and completely disagree with what your doc said about it taking weeks to be effective. Don't let them bully you into surgery. Keep doing your research and YOU decide if you want surgery or want to try remicade. Btw-what type of hospital are you receiving care in? Academic or community? Does your poo have a horrific odor?

I had surgery about 8 weeks ago but for me it was not a last resort. Enemas and mesalmine did not work, and I was not prepared to accept the side effects of steroids or immunosuppressant drugs. I was also not prepared to go through the ups and downs cycle of UC, even with medication .... debilitating flares that could not be predicted I saw as both physical and mental torture.

Before surgery, UC ruined my life and body ... I was housebound and unable to work or even go to the shop due to the urgency and frequency. I was going 15-20 times a day with cramps. The blood loss reduced my hemaglobin levels to critical levels and I had next to no iron. In the space of about 2 months I lost 20kg. I tried diet modification and stopped eating foods I like ... eating was no longer enjoyable and often I didn't feel like eating anyway.

Since surgery, I have regained weight and look healthy again. I no longer look as pale as a corpse. I can eat whatever I want. I empty the bag when I pee, which is much more convenient then 15-20 urgent trips to the toilet. I no longer count how many trips I make to the toilet each day and I no longer worry about blood or the form of my poo. I don't take any medication. And I can go out whenever I want, for however long I want.

For me, surgery has turned my life around. It was a big decision and the experience was painful at times. And there is the adjustment to a new way of pooping. However, once I faced the fact that UC meant I would never have a normal healthy bowel, it was easier to accept that the less than perfect bag that comes with surgery was far better than the life I had with UC. Of course, everyone experiences UC differently and needs to find their own pathway through UC but if you do end up facing surgery my point is: it's not the end of the world but it could be the start of a much happier and healthier future without UC and without medication.

Post Edited (GC4249) : 8/26/2016 8:48:35 AM (GMT-6)