Hello, I am new, my name is Adam, thank you!

Welcome to the forums, Adam!

I'll talk about ulcerative colitis as I know more about that than Crohn's. With this disease, there are generally periods of flare ups and periods of remissions. Flare ups is having symptoms - your disease is 'active'. Sometimes a flare up can be mild, so the symptoms aren't too bad. Sometimes they can be severe. Flare ups can last a short time or a long time. Going 25+ a day to the toilet sounds severe to me! But you're not alone. Many people here have had major flare ups.

In a remission, you have no symptoms! Not everybody manages to achieve a remission. Some people stay in remission for many happy years. But that's always the aim. With maintenance medication and treatment, some people manage to stay in remission where they have no symptoms and no inflammation. The goal of treatment is to get into remission.

The measure of flaring is really about how much inflammation is in your colon. With a colonoscopy they can see inside your colon and see how much inflammation is there. That's what really matters, in terms of seeing how bad the disease is. Your symptoms are usually pretty well correlated with that, though hypothetically it's possible they could diverge a bit (symptoms worse than inflammation might suggest, or vice versa). To doctors, they are really interested in how much inflammation is there. But it's also important how manageable your symptoms are. Because that's about quality of life! That's what affects us all when we're ill. And it is a huge indicator of how your inflammation is probably doing.

Aside from maintenance medication, during a flare up they will also want to give you acute treatment to try to bring your inflammation down and get you into a remission. Steroids are an example of that. Remicade is a maintenance medication but is also an acute treatment which is used to get people into remission. Something like steroids are too dangerous to be used too long-term so they can't be used for maintenance. Other drugs are good for maintenance but not very helpful at tackling an acute crisis. Remicade is a strong drug, which seems to do a lot of good for a lot of people.

With this disease some people respond really quickly and brilliantly to a certain drug, with others it has no effect. For some unlucky people nothing seems to work. Some people have a really easy ride and for some people it's a living nightmare, frankly! It can also change. For example a few years ago when I was diagnosed they told me my colitis was pretty mild. I thought that meant it would stay that way but it doesn't. I have had more severe flare ups since. It's a dynamic thing, how much inflammation there is. It can go up and down.

But there are lots of opportunities for light at the end of the tunnel even if things are pretty terrible. Surgery isn't great, but if it's ulcerative colitis then it does eliminate the problem. As a last resort, that's not so bad. I believe it's very rare to die from this disease.

Sorry to hear steroids haven't helped you, that's a real 'bummer'!

I don't know what your situation is. Personally I think if your symptoms are as bad as they sound and it was me, I would take time off, but I don't know about how your workplace operates with regards to that etc. Whether they would give more time off to somebody as ill as you. I don't know. It sounds to me like you have gotten accustomed to really quite bad symptoms and are handling it with stoicism, which is very admirable. At the same time, getting well has to be a priority, and it seems like a lot of suffering to try to continue all your everyday tasks when you're this ill. That side of things is more of a personal choice. But look after yourself as much as you can!

Hope that helps. Also - I am so happy for somebody to come and correct me about this. I'm not a doctor, so hope I've given accurate information!

Post Edited (~ chicken wings ~) : 5/26/2018 2:31:20 PM (GMT-6)

My Dad also has UC. One of the problems he had when he was flaring as badly as you are was that it also makes it harder to think. He actually had a work place accident as a truck driver and his boss told him he had to go to the hospital and get checked out. He was admitted and there for a bit getting stabilized. When I was flaring badly my first time and got to where I was laid up I was just keeping going without realizing how sick I was. It honestly took me two months on the road to recovery before I could walk through the grocery store. Another flare I was laid out only about a week. Be sure to drink things with electrolytes to help counteract everything rolling through you so fast.

I will just add to what chicken wings said. Every person is different with IBD. Some people have one flare up and it never comes back, some have a flare up every few years, while others can never get their disease under control. Most people who are easily treated will not post on the internet, I think this forum tends to cater to those with more difficult to treat disease.

You are in a difficult position because you do not have a definitive diagnosis. The fact that prednisone is not controlling your inflammation is unusual, but not unheard of, based on what I've read here on healingwell. I would suggest asking for another stool test to rule out bacterial or viral infections one more time. You may have to lean on your GI a bit to get this. When dealing with your doctors, it is important to be firm if you feel something is being missed. C-diff, a common intestinal infection, is often missed on initial stool tests and there have been some very recent studies showing a large portion of refractory flares (those that don't respond to medication) are either caused or exacerbated by viruses or bacteria. For some, the right antibiotics or anti-viral medications do the trick. I would suggest doing a search through old posts and you will find more info on this. I believe it was imagardener posted something in the last few weeks on this.

For work, I would simply talk to your boss about what is going on. Most employers will be understanding. I would also suggest saying the doctors believe it is crohn's disease because people seem to be more familiar with that and you will have to do less explaining. If you work for a larger company, your human resources department will be the place to go. If you continue to struggle, you have legal rights and can take a leave of absence through FMLA if you live in the United States. Good luck and welcome to the forum.

Some search words to check out (always include "UC" or "Crohn's"):
Paleo AIP, Anti-viral flare, dietvsdisease UC, borody, redhill biopharma, MAP vaccine, curcumin and mesalamine, vsl 3, fecal transplant (FMT), specific carbohydrate diet (SCD), E. coli nissle, c-diff

Again, all the kind words and information are awesome! I was so busy *****ing that I forgot to share the best part. This entire episode has been an absolute blessing. I am ashamed to say the type if man I was a month ago. I drank like a fish, ate horribly, Vaped like a chain-smoker, terrible relationship with my wife and kids. I had become the man I swore I never would. None of this happened overnight. My normal had become a person I did not recognize. I was not just thrown the big C to go curl up in a ball and perish. I was given a choice, a second chance. My life since all of this is far different. No alcohol, nicotine, caffine, processed foods. I miss the vaping so much.

The biggest part is the appreciation and love I have, and now receive, from my family. I was the only one who changed. My family did not need to. Maybe I am an ******! No, I definitely am! I will try to show more of Adam with my big boy pants on in this forum. However, I can not tell you all how much I appreciate a shoulder to cry on too.

Adam

Inflammation is what you need to lower using RX. The enemas will help at the lowest end (where oral meds don't do much) and oral RX will help internal inflammation. Many, many people get relief from symptoms using the right oral RX plus using enemas until the enemas aren't needed. Finding the right oral RX can take some time or you can be lucky off the bat.

It's likely you can get relief doing oral plus enema RX. And I hope you can.
A smaller percentage of us have to add diet into that. So don't stress about diet until later.

Some doctors just don't have great personalities. My rating of any GI is: they listen to me, they write the RX I know works for me, they order appropriate tests, they don't make me have unnecessary c-scopes. I prefer a GI with 10+ years of seeing lots of UC so they've seen a lot. I don't want to be a lab rat (guinea pig).

Good luck.

edit to add: if she RX's a steroid enema or foam type that's fine short term. It could be a fast-track to getting your multiple BM's stopped. Steroid enemas can't be used long-term, unlike mesalamine enemas which can be used as long as needed.

2nd add:I missed the part you were going on to Remicade soon. I never used this level of treatment so ignore my "oral RX" notes since it does not apply to you.

Post Edited (imagardener2) : 5/29/2018 6:05:58 AM (GMT-6)

welcome to HW!!! Diet is not likely to be the cause of your ongoing issues considering the severity you describe. Have you had a test for c difficile? I didn't see it in the results you posted. Diet can help with immediate symptoms, like gas, but in the big picture, for me (and my UC was severe), diet did little to nothing. The diet that helped me most was, eat infrequently and limited amounts. Less in, means less out. It's very unhealthy to live like that though, so I do not recommend it.

I am not saying to stop looking out for what you eat. Of course you don't want to eat a ton of gassy food and make yourself uncomfortable. I also don't think you should stop trying alternatives. My path took me down a lot of different avenues, and while none of it really helped my UC, I am happy I tried a variety of options. I felt like I exhausted all options. Eventually I had surgery, but that is not something you should even think about at the moment.

I think you will do great on remicade. If it works well for you, and it does for about 60% of people, you could be back to feeling 100% within a few weeks. Not only that, but you could have that result for years. Many people do well on remicade for many years.

Regarding work, I was in such a horrible state for years, everything with my career sort of went out the window. You definitely need some flexibility. You could request FMLA. You can get intermittent leaves for periods of time. That would help to ensure you're able to get the time you need.

As for whether you're flaring, if you weren't, you would feel like you did before you developed this awful condition. When I was in remission, I would go once per day fully formed, no blood, no discomfort. Doctors will also do blood tests and FCP to check for increased inflammation - but it doesn't always show up in these tests.

I am sorry your sister propagated that falsity about UC being easily manageable. It is for some. yes, the "mild" type does exit, but the severe type exists too.

My first bad flare I kept a food journal. I eventually came to the conclusion that for me there was a natural ebb and flow of symptoms from day to day that at first I attributed to foods. When flaring very badly a low fiber diet can help tremendously, however.

Hi; I'm new here too, although I've been reading posts for over a year. I was pregnant when I was diagnosed, so I had to be more careful about jumping on the meds because of the baby, but you definitely have more flexibility in that area. Like chickenwings said, your main goal is to get into remission using whatever works for you, and then (with the advice of your G.I.) wean down on your meds and (I would) include dietary changes (a food journal is good).

My G.I. just came back from a medical conference a month ago and said the recommended treatment protocol now is to start with the hardest hitting drugs to try to get remission asap, then taper down to the lesser drugs. Some people don't want to be on meds; others don't care as long as their symptoms are under control.
Another thing that has helped me personally is to not freak out (easier said than done, LOL). I agree that your G.I. was kind of a jerk for mentioning surgery right away.