HealingWell
Search Close Search
☰

New to Ulcerative colitis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/14/2016 12:52 PM (GMT 0)
Hello,
I was recently diagnosed with Ulcerative Colitis this past month. In July I started a flare up in/out of hospital three times. The third time they finally admitted me. I had a colonoscopy and endoscopy which came back normal, however all my blood tests and scans should Ulcerative Colitis. My GI dr put me on Sulfasalazine 500mg 2 times a day. I also take Vitamin D, Vitamin B, Magnesium, Vitamin E, Florastor, Vitamin C, and a probiotic 2 times a day. I have been feeling good, however this past Tuesday I hate something that my stomach did not like and now I feel awful. Is this normal to feel this way if you eat something your stomach doesn't like? I have to urge to go to the bathroom, my stomach feels bloated and just unsettled. I feel like crap. My back hurts between my hips and butt area. I have no energy. I have tried to go to the gym more but yesterday I couldn't. I was scared I had to run to the bathroom. I feel like I have had a set back after feeling so much better this past month. Is this normal? My primary wants to check my vitamin d and b levels in December since I just started to take them. I have cut coffee, and any soda out of my diet. I only drink water, G2, or juice with less sugar (g2 and juices are a treat).
It's very hard to express how I feel to my loved ones. I can't find the words. I just say to my husband I don't feel good. I feel like a broken recorded.
Posted 9/14/2016 1:06 PM (GMT 0)
Some of us are much more affected by food/drink than others are. It took me a long time to make a list of foods/drinks that caused problems because some of them are immediate and others take hours/many hours to cause problems and the problems can last a long time, even cause bleeding as well as the other probs of urgency, gas, bloating, pain, etc.

Find the foods/drinks that DON"T cause problems and rely on them to get your system calmed down. It's like a re-set button. It only took me about a hundred "fails" to accept the fact that my gut would punish me if I ate/drank something it could not handle. In the beginning (flaring) it seemed like everything caused problems but after getting a handle on it my list of bad foods/drinks is a lot smaller.

Good luck. You are on the right track cutting out caffeine and soda. Only you know what the rest of your guts hated foods are. It's a long learning process and not easy especially when you love the foods/drinks your gut now hates. My husband has been a great support and I'm sure yours will be too when you explain what has changed. Some of the food/drink changes can be temporary and after you get into remission they can be consumed with minor problem (or none).

Chicken broth and veggie juice get me out of trouble but sometimes it takes a couple days before my gut gets settled.

Post Edited (imagardener2) : 9/14/2016 8:27:19 AM (GMT-6)

Posted 9/14/2016 2:14 PM (GMT 0)
It is really hard to tell Family how you feel. No way to really explain it, it really stinks but you will get back to feeling much better soon. Just have to figure out what foods works best with you and the right meds.


I am new to this as well but I do have to watch what I eat. I pretty much live off turkey sandwich's. There are a lot of people on here with a lot of knowledge and I am sure they will chime in very soon.

What did you eat?

Last week our somewhat new freezer went out. Thought it was just the freezer but our fridge was no near as cold as it should be and I ate some coolwhip. Tore me up.

Hope you feel better soon!
Posted 9/14/2016 4:34 PM (GMT 0)
I know that fried, greasy or fatty, also spicy foods are a big NO for me. Also having a big meal kills me. I had some fully cooked buffalo chicken pieces that I just heated in the microwave. I didn't realize how spicy they were going to be. I ate about 4 pieces and that was it. This was Monday night, I felt bad yesterday. I didn't have diarrhea but I went five times and felt the urge to go. Last night was the worst I felt bloated, and sick. How I felt when I was sick. Still feeling a little bit bloated and unwell, but I can work with it.

My husband is very understanding. It's just very hard for me to explain how I feel. It's not a stomach ache. I think that family will not understand unless they have dealt with this.
Posted 9/14/2016 4:43 PM (GMT 0)
It's unusual to have a ulcerative colitis diagnosis based on only a blood test. You said the colonoscopy and biopsy were normal. At least biopsies would show permanent changes if you indeed do have uc.

I'd guess you have something more like IBS, that certain foods bother you. I'd recommend keeping a food diary listing what you've ate and your symptoms the next morning, and look for correlations (such as, every time I have spicy chili I have a bad morning).

There's no list of do and do not eat foods that applies universally to everyone. Rather, it's highly individual and varies quite widely person-to-person.
Posted 9/14/2016 4:50 PM (GMT 0)
I don't understand how the endoscopy & colonoscopy can be normal and you still got a diagnosis of UC. As far as I am aware there is no blood test or scan that can diagnose UC -- they can indicate inflammation but not the cause of the inflammation. Is it possible that you have some other form of colitis rather than ulcerative colitis? What were you symptoms when you were diagnosed? (Don't be afraid to be specific -- we talk about poo all the time here so there's no such thing as too much information)

Did they do any biopsies when you were scoped? They should have been done. If you have a copy of the report from the scope or biopsies, what exactly do they say? If you have some other form or colitis you may need a different treatment plan.

Have you had any stool tests one to check for pathogens?

Those symptoms could come from side effects of the Sulfasalazine, but they could also come from food issues or a worsening flare. Try eating a very light & bland diet for a few days to see if you feel any better. You could also stop taking the meds & see if your symptoms improve, but you should probably talk with your doctor before doing that.


Welcome to the forum, though I am sorry that you have to be here.
Posted 9/14/2016 5:32 PM (GMT 0)
I agree, I thought the same thing also. The first time I went to the ER. I had diarrhea about 40 times in one day. I would get up from the toilet and 5 secs later have to go again. Nausea, no appetite, throwing up.. They did a ct scan (where they put the weird stuff that feels like you have to pee) and they said I had colitis. My white blood count was extremely high. I was at the ER three times. The second time I went they did a x-ray and said that it looked better. The third time I went. I was still feeling nausea, diarrhea and throwing up, no appetite (admitted me). They said my blood count was still high. In between the ER trips I had many blood tests, and stool. They also did I believe 8 biopsies . I was shocked when my GI said UC, however he did say that he has seen this before. The person before my apt her colonoscopy came back saying UC and her test came back negative. He said he was going to treat it as UC. I see my GI in October and going to ask for copies of the results of everything.
Posted 9/14/2016 6:09 PM (GMT 0)
I think it is only colitis until a biopsy can confirm UC.

The meds are largely the same, but with colitis, more work is put into finding the cause. Colitis can be cured.

Did the tests include c.diff?
Posted 9/14/2016 6:17 PM (GMT 0)
Yes I know for a fact that came back negative.
Posted 9/17/2016 11:00 PM (GMT 0)
Gatorade caused some bloating and discomfort for me. I attributed it to the sucralose. I avoid foods with artificial sugars.
✚ New Topic ✚ Reply