Just diagnosed w/ ulcerative colitis

[stripes22002]

I was recently diagnosed with severe ulcerative colitis. Funny thing is I had a flare up back in 2007, dealt with it for 5 weeks before my primary could see me and by the time I saw him it was starting to subside. He mentioned Crohns but did no testing and put me on Dicyclomine(Bentyl). Had almost no issues from that point until about a month ago(I guess I was really lucky). Things got real bad real quick and again had a hard time getting a doctors appointment. Finally got into see the primary same practice as 2007, different doctor. He said no way I have Crohns, wrote me a script for more Dicyclomine and told me to see a Gastroenterologist. Started taking the meds, had a CAT scan, and a week or so later (also 28lbs later) i saw the specialist. He said the Dicyclomine is the worst thing I could be on. I stopped taking it and right away the symptoms got a little better, still very bad though. Specialist got me in for a colonoscopy two days later and determined his suspicions were correct, ulcerative colitis. So on 8/17 I started taking 40mg of Prednisone (reduced to 30mg after 1 week), 1000mg of Flagyl (reduced to 500 after 1 week), and 1200mg of Asacol daily (increased to 2400mg after 1 week). I adjusted my diet the 1st couple days but no matter what I ate, I got the same result, so I just ate whatever i felt like, I really like spicy foods. Well a few days ago I decided to adjust my diet for a longer period of time, still waiting to see results. As of right now I guess I would say my symptoms have subsided some, less blood and not going quite as often but still very, very loose. My biggest problems are iin the middle of the night. Some nights I have to visit the bathroom 3-4 times and each time is like running a marathon! Is this what my life is from now on, or might I go back to normal with time?
I noticed a thread about smoking. I was quitting when I had the 1st flare up in 2007 and was still quit when it subsided but eventually went back. This flare up started within days of me reducing from about 1 pack a day down to 3 cigarettes a day. It is crazy that quitting smoking might be the cause of this. Damn cigarettes should be outlawed! I have not given up on quitting just yet, but if these symptoms dont subside I might have to.
Any feedback letting me know what I am in for, or any advise anyone is willing to share is greatly appreciated. Thank you for taking the time to read my post.
Matt

 

[Trysha]

Hello Stripes
Welcome to the forum.
Sorry to hear you are having problems and hope these can soon be resolved for you.
There is a subforum on here that you might find helpful and where you can meet fellow sufferers of ulcerative colitis.
Quitting smoking is always a good thing so don't give up on quitting.
I find my pain rears its ugly head in the bedtime hours and seems to be better in the daytime. Could be the pressure with lying down, seems a vertical position is better for me. I have Crohn"s in the sigmoid area, so symptoms can be similar to ulcerative colitis'but the treatment is different.So far I have not found any foods to cause a problem. My appetite is poor to non existent though.
If you are having serious symptoms still, especially the bleeding I would suggest you get in touch with your GI--- he may advise an adjustment of your medication.
Monitoring can be very important especially at this early phase of treatment.
Diet can be implicated for some and others seem to be able to eat what they fancy, it can be an individual thing.
I am sure there will be others dropping by with their opinions for you.
Feel better soon.
Hugs and best wishes
Trysha

 

[Angrybird]

Hello Stripes and welcome to the forum

I do not have UC myself (another crohnie) so could not say exactly how long the meds can take to work for this but I would have hoped by now that you would have had more of an improvement. When are you next due to see the GI? Are you able to perhaps contact them or a GI nurse to let them know you are still having bleeding/getting up in the night?

As already mentioned we also have a forum dedicated to UC to do check this out as well so you have a chat with the folk here: http://www.crohnsforum.com/forumdisplay.php?f=69.

Pls keep us updated on how you are getting on.

AB
xx

 

[Rossy]

Hi, thats pretty tough getting up so many times in the night, suggestive that you are in quite a bad way. Of course the whole GI tract should shut down when asleep, when unwell this doesn't always happen but to be up so much so regularly is not good, make sure you say this to your GI/nurse.
Might be that you need to increase your meds, rather than reducing them to get on top of your symptoms.
Take care, let us know how you get on.

 

[stripes22002]

Thank you for all the kind words and advice. I see the GI again on Tuesday. Hopefully I will get some more answers and info then.

 

[meltre]

Hello

I suffer from UC, have been since i was about 17/18. I was in remission for the past 2 years which was great but im having a flare up again at the moment and its lasted about 3/4 weeks till now. It sucks and i'm trying to rise above it though its hard, i don't have trouble at night time like yourself its more in the day which can be a nightmare at work!

Have you been stressed at all about anything else in your life at the moment which could have caused a flare up? They say there is a connection between nicotine and UC which can help, i am too a smoker though don't want to stay smoking all my life! :ymad:

At the moment i'm drinking Pomegreat which is meant to be helpful towards inflammation, i am starting to keep a diary of what foods i'm eating so maybe by doing the same may help you recognize what foods tend to upset you even more?

Spicy food is a big no no, though everyone is different and what affects some people may not affect you.

All the best!

 

[stripes22002]

Yes, both of the major flare ups I've had, back in 2007 and present, were during high stress periods. At this point I've stayed pretty commited to a bland diet and still taking meds and I can say for sure things are getting better. I am smoking a little more, about 1 pack every 3 days, but hope to cut back down, or just quit, soon. Still have problems at night, but not as bad. Probably the worst thing now is the side effects of the meds but I'll take that any day over what I was dealing with 3 weeks ago! Thanks for the input, I hope you are feeling better soon!

 

[Thermo]

They say that smoking helps UC symptoms and makes Crohns symptoms worse. I smoked for 10 years and I will tell you that it caused too many issues to sit here and name. Unlike the general population who could (barley) get by a couple decades before it really caught up with them you have an IBD so it really affects you. Wait until you fully quit you will notice how much the smoking was affecting your stomach and your overall health. I will say I tried to quit over 20 times in 10 years and 8 months ago I quit cold turkey after I had a flare that 'wasn't right' unlike all of my other flares for 20+ years. Four months later I had 17 inches of my intestines removed. To this day I am still smoke free and now picking up a cigarette scares the hell out of me. But I knew me quitting would come down to my health one day and I was right. Sitting here after 8 months without cheating once, I will never go back my symptoms are nothing now. Compared to what I was dealing with before with the smoking and all of the other symptoms I will never go back. Just thought I would give you some encouragement, you will get there one day at a time.

 

[CheerBear12]

Hi sorry you are going through all of this hope you get better soon. I was like you I had a flare up for 4 months before I done anything about. Regret that so much and went to doctors he gave me Imodium which really didn't help made it even worse eek. A week later I went to A&E in absolute agony and was crippled with pain. They tried me on pred, pentasa, infliximab and nothing worked. I finally had to have an ileostomy they removed all of my large bowel which could of burst at anytime which could of killed me. That was 9 months ago and I was in hospital for 6 weeks very very severe flare up and they still don't know whether it's Crohns or colitis. My surgeon said it was the worst bowel he had ever seen. Don't mean to scare you it sounds like the meds are working for you. I can't how quickly the flare up became severe. Get well soon big hugs

 

[stripes22002]

Thermo, good for you, it is encouraging to hear it can be done. I have 9 year old twins and if it wasnt for them I probably would never even consider quitting. Maybe today will be my last ciggarette?

 

[stripes22002]

Thanks for the hugs chearbear, right back atcha. I can only imagine what you must have been going through. I hope you are feeling better.

 

[CheerBear12]

It was The most traumatic thing in the world was depressed before and afterwards. Took me three months to build my strength up and I couldn't do anything for myself for three months. I'm so much better I have my life bk. They thought I had ulcerative colitis but it turns out a diagnosis of indeterminate colitis which I should have known it was going to be that. Hope you get well soon xx

 

[CheerBear12]

Keep us posted on your progress xx