New, worse symptoms destroying my spirit-Any suggestions or words of wisdom?

Hey guys,

I've been reading this forum since I was diagnosed with proctosigmoiditis last fall, but I didn't create an account until recently (so please forgive me for any errors.)

I was told I have a "mild" condition, but I've been in a flair since my diagnosis and it just seems to be getting worse and worse. Is it possible that the disease has spread or worsened? I started with bad gas, cramping, bloating, mucus in stool, bloody stools, and bouts of constipation...after a while, I seemed to be improving. The blood lessened, I was having regular bowel movements every day (they were urgent, but I preferred them to the constipation for sure) and I was basically able to eat what I wanted with only a little discomfort. Then, after Christmas, I was forced into taking Apriso due to insurance changes, and my symptoms became out of control. I was given enemas and steroid trials, but nothing seems to be helping me toward remission.

Early this summer, I became so sick I couldn't eat. My cramps were beyond painful, bms were liquid blood and mucus, and I could FEEL my colon...like it was squirming or something? I couldn't sleep at night because I'd have to run to the bathroom every thirty minutes. I tried Uceris, and, although it helped at first, my body seems to no longer be affected by it anymore. I stopped taking it (mainly because I hate steroids and it wasn't working.)

With the help of more enemas, I seemed to be healing, but, I made the mistake of thinking I could finally go on my dream trip to Disney with a friend and her family....and I got a sinus infection that caused my flair to become nearly unbearable. I lost weight because I was unable to eat at all, and was told I was anemic (something like an 8.3...when I needed to at least be an 11.)

I took a small round of Prednisone and I got much better...until last week. Instead of the usual terrible cramps and pain, I began vomiting, and have been plagued by nausea all day, every day for 7 days. Again, I find I can barely eat food, and, even worse, it's like I can't even taste it anymore. I'm still anemic (the iron pills don't appear to do anything.)I have an appointment with my GI Wednesday, and I'm really hoping you guys can offer me advice on what to do. /: I'm worried I'll be unable to maintain my fall job...which would affect my ability to continue attending college. This disease is causing me major depression and anger...if there is any way someone can offer some positive vibes or something, I'd really appreciate it. I'm miserable.


Also, does anyone think it's a good idea to try the nicotine patch or something? I've heard smoking helps.

I'm really scared I'll never be able to get out of my house/have any kind of a life again, and I miss food like crazy. (I really can't afford to lose a lot of weight.)

Sorry for ranting, I just feel lost. Thanks to all who read my extremely long post!

Thanks for the reply!

I definitely plan to try immunomodulators or biologics. I'm hoping to convince my doctor to let me try one of those types at my next appointment. When it was first brought up, he said he thought my case was too mild to need them, but I believe my circumstances have changed and (unfortunately) that's no longer the case.

Thanks for answering my nicotine question, I think I'll try that out soon.

Because of the side effects of biologics, and your doctors opinion that you have a mild disease course, I would start with 6-MP before going to last line therapy (biologics). Well, technically surgery is last line, but for medications biologics would be the strongest. If you are uncertain about specific medications and options, the Crohns Colitis Foundation of America (CCFA) has them categorized and explained nicely.
I wish you the best in your quest for remission!

Hi Lizzy, I feel your pain- I am a student/worker who just joined the boards too! This has also kept me away from friends so I understand how that feels.
Have you tried identifying trigger foods? I wouldn't say that could heal you at this point but it might help ease symptoms and pain. I have certain foods that once I am flaring, I stop eating.
I've read studies that say nicotine therapy is helpful! Just do it sparingly.
Also, try probiotics, if you haven't already.
I wish you the best :)

First off, thanks for all your responses. It feels so good to talk to people who understand what I'm going through. I agree, the Apriso isn't enough. My hope is that they up my dosage and add an immunomodulator (like imuran, I've heard good things about it.) I'm willing to try the biologics, but I would prefer to wait because of all of the side effects associated with them.

My mom has RA and she's actually on Humira, and it seems to do great for her, but I'm hoping i can hold off on stuff like that for a while.

And, Nyccat, my main triggers seem to be nuts, breads, and sugary foods, but, for the most part, my biggest trigger is just overeating. If I eat small meals thought the day, instead of the large ones I prefer (lol) I tend to feel much better. It's affected my ability to go out and spend time with friends, too. That's one of the things I hate most; we're supposed to be out enjoying life as a college students, but this disease makes it hard to even leave my house.

imagardener2, I was prescribed probiotics with the antibiotics. I haven't really noticed much difference while taking them, but maybe I should try a different kind? I'm sorry to hear the nicotine didn't work for you. It seems like no two people have the same reaction to these things. Also, I have three or four enemas left (just in case) do you think I should try using them asap?

I'd like to thank everyone for your comments! I'm going to try to keep all your advice in mind when I go to my appointment Wednesday.

The silver lining is it will get better at times! I went almost two years in remission, and although I still had anxiety over the disease, my life was very close to normal.

lizzy I have almost the same story as urs. I was diagnosed last November, and doctors are lost and dont want to give me anything other than the 5-ASA medicine and enemas. Symptoms vary everyday, if blood disappears, diarreha comes. then Constipation comes with blood and mucus. So honestly im as depressed as you are. And as we are new to this disease, we have a lot to learn. i thought changing doctors would do, but I have been to 3 already and done 2 colonoscopies in less than 8 months, and results come similar. They still consider me mild. I just had my oatmeal breakfast that I have once every 2 weeks cz it tastes good, and then I rushed to the bathroom for a liquidy stool. I dont know what to take or what to do. I head imuran has very bad side effects and I wont be able to stop it before 5 years at least. I wish you the best of luck... Let me know if anything works for you because I don't seem to getting any better with what I am taking now.

Take an antidepressent and a drug like Klonopin. I take those and immodium and I am able to go out and live my life. Also, try meditating -- that helps. I downloaded an iPhone app called "headspace" -- it has a 10 day free trial, it was pretty good.

What prednisone are you on? 40mg should fix you up. Also, sounds like you might have a virus or infection or something, might want to ask your GI to do a stool study.

Be careful about getting started on benzodiazepines like Klonopin (especially because you are in school). Research has shown that they impair your cognitive functioning and it is unclear if all of this is irreversible after discontinuation of the drug. I'm not sure what your career aspirations are, but it's definitely something to think about if you are going to be moving on to graduate/professional school. Of course if you can't function without an anti-anxiety medication, then you have to do what you have to do, but use them as sparingly as possible.
I have suffered a couple panic attacks, and I currently have a prescription for xanax; however, I've had the same prescription bottle of 20 for almost 2 years. I rarely use them because they should only be used in emergencies. You do not want to get dependent on them! I hear the withdrawal symptoms are a nightmare.

The first time I had a panic attack, I thought that I was dying. I rushed to the hospital, and after several tests, was told that I just had anxiety and that was all. I followed up with my primary care doctor at the time, and he wrote me a very small prescription for a benzodiazepine. He told me to take as little as possible even though the bottle said I could take it 3-4times per day. He warned me of the severe side effects, and I only took one that day. Instantly I felt calm, yet euphoric(the euphoria will never be like the first time). My anxiety quickly went away. I followed up again with the doctor, and told him after the one pill, I didn't feel like I was gonna have a heart attack anymore. He said: "Your heart often flip flops or skips a beat, but we don't notice it because we aren't anxious. When you start having anxiety, you tube into to every mechanism going on in your body that you can. Sometimes every body just needs a reset, and that's what xanax does. But of course you don't want to make a habit of using it that way..."

According to everyone around me, they believe stress sets off my flair ups. I'm sure it does, but I get confused because a lot of the times a flair up pops up when I don't really feel that stressed. I've had one or two panic attacks (before being diagnosed with proctosigmoiditis) but I recognized that the attacks only happened in really specific situations, and since I've made sure to stay away from that specific type of stress, I've been fine.

However, my doctor (and entire family) seems to think that I must be feeling some underlying stress that I don't recognize, and I'm debating on taking an anti-depressant drug in hopes that it will reduce my UC symptoms by helping control my stress level. Has that kind of drug ever helped any of you with symptoms before?

I AM a bit wary of using that type of drug because, as you mentioned, it can affect your performance in school. I'm still just an undergrad, but I want to do well in my courses...and I've never taken that type of med before, so I'm not entirely sure how it will affect me. Honestly, were it not for the anxiety/stress making the UC worse, I wouldn't even think of taking an anti-depressant because I usually feel pretty alright dealing with stress in more natural ways.

At my appointment on Wednesday, my doctor took me off Apriso (and moved me back to Lialda, thank goodness.) I'm also supposed to keep taking the steroid enemas for a short amount of time. I already feel much better than I did before, but if I continue to have the flair, I believe my doctor plans to up my dosage of Lialda. Hopefully, this will get everything under control...