Newly diagnosed, need and appreciate any insight

I have been in ongoing pain for 4 about months. The pain goes up and down, from dull discomfort to full blown fetal position type of pain. Unfortunately, I was misdiagnosed a few times before I was finally told I had colitis a few weeks ago. I am new to this UC forum and pretty clueless about what the condition entails. I was put on a flagyl initially and my body couldn't tolerate it, so the doc switched me to clandamycin. I finished the ten day antibiotic prescription and it is now about a week later..I feel no improvement with the pain and no decrease in consistency of the pain. Is this normal? I have an appointment to see a GI specialist next week and hope to have some relief in sight. I try to eat as healthy as possible since my diagnosis, but continue to have diarrhea multiple times a day. If this is what a typical flare up is and the length of time it usually occurs, then I do not understand how people manage life with it..It's very frustrating and discouraging. I just want it to go away and hope there isn't a deeper issue causing these persistent symptoms. I know your body has to heal and that takes time, but how do you know when its improving if no signs of relief are present? I have driven myself a bit crazy trying to understand what is going on with my body over these last few months, it has been exhausting. I just want some answers and piece of mind that I will get better soon, at this point I feel like that is never going to happen. I was even convinced that I had C diff and was told by my primary that my tests results came up negative, but I hear it is possible to have a false negative, which worries me. I realize only a specialist can figure out what exactly is going on, my grandfather struggled with Crohns his entire adult life..I'm assuming that is directly related but unsure?

Lynn, I'm sorry to hear about you pain and diagnosis. I've only been diagnosed a year so I'm sure others can offer additional support. My thoughts....
First you said you were diagnosed with colitis. Was it ischemic or ulcerative. Did you have a colonoscopy? Colonoscopy is the best and only way for a true diagnosis. I don't understand antibiotics as helping manage a flare for uc. In fact unless it's cdiff my dr doesn't have me ever take antibiotics. First response is usually steroids in combination with oral mesalamine or rectal enemas. If you are seeing a gi they will get you properly diagnosed and started on the right meds.

As far as diet in a flare I stick with low residue, low fiber. Bland: White breads, soft lean meats and fish, white pastas, rice, potatoes. Think of everything that sounds healthy and stay clear. No fiber, fresh veggies, fruits, nuts. Many swear by different diets, but they never work for me during a flare. But each person is different. Every dr I see recommends low residue.

Seek out the best possible care. Find a good gi and get second opinions. Fight for appointments to be right away. When I first was diagnosed I was told constantly I would have to wait 3-4 weeks for appointments, tests, etc. if I didn't advocate for myself it would have taken months to start meds and recovery. Instead I hounded every office until I got in.

Best of luck.

Thank you for the helpful information, I find any insight or advice extremely comforting because I am having a confusing time trying to navigate this diagnosis. I feel like most people do not understand unless they have gone through it and even my family and friends are bewildered. I haven't been to my GI specialist yet because I just received my referral from my primary doc when I stared my antibiotics. I was lucky to get into a GI appt for next week, as they are booked out a month. I begged to be squeezed in sooner and they were able to get me in to see a specialist next week due to a cancelation. I have been housebound for almost a month and it is making me anxious to think this could go on indefinitely. I am still trying to figure out what my body and gut is tolerant of, I haven't seemed to find the magic trick for my diet yet.

I am glad you mentioned that because I can tell from my own trial and error that food and diet have little to no effect, regardless of what I eat. I keep trying to explain that to my Mom but she thinks it can be improved through diet. I understand it is very important what you eat, however it just seems like it hasn't made a difference. I hope whatever medication I get prescribed will get along with my body and give me some relief finally. I look forward to the day I can get back to my normal life and feel healthy once again.

I'm sorry you are in such a tough place. You said you were diagnosed with colitis meaning that there is inflammation in your colon. You did not specify which type of colitis.
If it is pseudomembraneous colitis than antibiotics should be able to treat it. However, clindamycin is not usually prescribed for Clostridium difficule infections. After flagyl fails they usually prescribe Vankomaycin. It's a good idea to take florastor ( yeast probiotic)
If it's ulcerative colitis you will need to start with mesalamines and often steroids like prednisone are prescribed to get the initial inflammation down.
While flaring it's best to avoid foods that will irritate you and cause more diarrhea others mentioned it. That means low fiber and no residue ( things that you can see in your stool or things not digested) like nuts seeds and corn
Things like fatty fish and lean soft poultry, white flour products.
Avoid caffeine as that can cause more stools.
Until you get a proper diagnosis avoid NSAIDs(Advil,Motrin,ibuprofen,aleve, naproxen, aspirin...) as those are very bad for UC
Tylenol is ok for pain
Alternating hot water bottles and ice packs is good for pain too
I wish you the best of luck

Def. start with low residue like kulinary suggested. Keep it simple and plain. Good luck next week.

As I cooking teacher and a uc patient l love to share recipes that are easy on the system. They won't stop a flare but I see a difference in frequency and blood when I stick to them:

1) Chicken breast ( bone in for moisture) roasted with skinned potatoes some olive oil and lemon. Roasted carrots too if you cook them long enough. Adding honey and herbs de Provence brings extra flavor.

2) white pasta tossed in olive oil and lemon juice with grated Parmesan cheese ( assuming you aren't lactose intoleran). Infused olive oils help bring extra flavor too.

3) salmon roasted with white rice cooked in chicken broth with some saffron for flavoring

4) skinless thin chicken breast breaded and baked in oven. I eat it on a bakery baguette with fresh sliced Parmesan cheese and basil flavored olive oil

5) italian wedding soup with turkey meatballs. Or chicken noodle soup. No onions. If you buy dry avoid msg.

Butternut squash is a good option as it's low in fiber and starchy. I add puréed squash to homemade Mac n cheese. Or I roast it and est with a protein.

I have a ton of low residue recipes since I've been in a flare for a month and have tested what I respond well to. I definitely bleed and cramp with red meat during a flare and tolerate dairy very well but it's trial and error.

I'm happy to share with anyone.

I love food so I refuse to let this disease make me eat bread and water!

My nationality is Hungarian and my mom cooked it always, but I LOVE Italian food, I've always told my family that I would rather die than ever not be able to eat Italian food ever again, that would be the last cruel straw on the camels back for me!

Thank you for the advice Uniform Charlie, I am open to any helpful guidance at this point. After much begging, I was able to get an earlier appt. scheduled for next week to see my Specialist. My primary doc has tested my blood, urine, and stool for everything under the sun and it has all come back negative. Due to my symptoms and history, she has said that UC is likely the culprit. I experienced a similar episode about 4-5 years ago. At the time I did not have a doc or medical coverage and didn't know what was wrong with me. I was miserable with painful diarrhea for months and finally got so ill I had to go to the ER. They said I had a colon infection, gave me antibiotics and stressed that I must follow up with a GI specialist immediately. I was never able to follow up, but blindly managed to come out ok and recovered eventually. I now realize it was probably not an isolated incident since it is happening again..only this time I can't seem to recover.

I highly recommend the SCD diet. Eating healthy is not enough. You need to give up most sugars and carbohydrates for the intestines to heal.

The idea is that the intestines over produce mucous because they cannot digest disaccharids and polysaccharides, and the over-production of mucous makes it even harder to digest these sugars. If you have a quick transit time and are having diarrhea, then your intestines are not working properly. You need to let them rest and heal.

I will not lie to you, the SCD diet is a very hard diet to adhere to, but it is far better than the medications IBDers are prescribed. It is definitely worth a one-month investment to try it out. It is also high in nutrients, including calcium. As for yogurt, I know some UCers can't handle yogurt. That's why you need to make it from scratch. You need to let it sit in the yogurt maker for 24 hours to kill all the lactose. I also drain my yogurt to get the whey out. And I use A2 milk only (from Whole Foods). The A1 protein, which is the protein in almost all American milk, is a lot harder to digest.

Some of the things I've noticed on this diet:
No diarrhea
No bloating
Soft stools

Probiotics can also help. But you need to get the right probiotics. Some can lead to overgrowth and make things worse. The SCD diet recommends only L.Acidophilus. Stay away from the others. Of course, homemade yogurt is way better than probiotics.

Also, going off gluten is not enough. I tried that. It did improve my symptoms, but eventually I was eating so much rice and sourdough bread that my symptoms gradually came back. The studies on gluten are small in scope. The ones on the SCD diet are much larger and the strong connection between sugars and starches and IBD have been around for a hundred years.

Of course, don't go off your meds when starting the diet. Steroids must be tapered.