New to the Diagnosis

How much Asacol are you taking? Which steroid? What were your symptoms that led to the hospital stay? Are you taking rectal meds? Suppositories or enemas?

Have you had a colonoscopy yet?

Im taking:
Prednisone (40mg; which I start to taper off of in a few days)
Asacol; 6 per day @ 400mg

No Rectal Meds or Suppositories. Do those work good??

The thought is that I got a bacterial infection of some sort and the I guess the UC just took over. I had horrible, loose, watery, bloody diarrhea for 8 days. Then spent 4 (almost 5) in the hospital. I needed IV fluids bad, plus a whole lot of other stuff that had washed out of my body and my kidneys were a mess. I had a flex sig while in hosp and it looks like pancolitis (whole colon). The cramps were so painful. It was a pretty nightmarish experience. I do not want to ever go thru that again.

I will try the fish oil supplements and will ask my DR to do a blood test.

I guess I just feel confused about what happens next. Will I always be fighting symptoms? Can I run again? Can I lift again to the level I was? I certainly am lighter now :) Why did you decide to slow down? Do you still exercise?

Can I eat? Coffee? Dessert? Tomatoes? Is the Prednisone going to make me gain 100 lbs?

Also, I do feel sad (?) or defeated, I dont want to have this disease, I dont want to be constantly monitoring this. I know no one does. I guess i feel a little angry, little sad, a little scared and lonely all at once.

For most, they work very well. Although they don't treat the whole colon, they get right to the source of the problem right away. I would absolutely recommend them.

I am a jogger. I still jog, I still eat a lot. Which foods to eat and not eat is different with each person. Some people find a very strict diet is all the medicine they need, some people find no relief no matter how much they eliminate. The best way to find out is trial and error. I think the most common think people try to cut out/cut down is refined sugars.

I know how you feel about the range of emotions you are experiencing in the last paragraph. It can be very disconcerting have UC, especially at the initial diagnosis. Try to focus on the meds working, healing the colon, lowering the amount of inflammation which will result in less symptoms soon. You want necessarily always be fighting the symptoms, but you will always have UC, no matter how long you go without symptoms. That is the importance of the meds and staying on them fanatically.

You might want to try l-glutamine. Or more of it if you already take it. Not only is it good for muscle growth, it is also very helpful in repairing the lining of the intestines.

I see the GI Dr. in a couple of weeks; I just got out of the hospital yesterday. I know emotionally Im kind of a wreck right now. Im also pretty weak and just barely eating again. Such a mess, I feel like. Once I see the doc, Im hopeful that more meds/info will be available. I just feel like they (dr's in hosp) said "yep, its UC. Good Luck, take these and follow up in 2 wks"

Its good to hear that you still jog, I really would miss that. I take the whole fitness thing kinda serious, I also have a 12 year old and coach football (3rd year). i just dont want this to consume my whole existence. Does it?

I will try the l-glutamine.

Thanks so much

Hi hmvpdx,

It can be pretty overwhelming when first being diagnosed and suffering from the symptoms you've had. My lifestyle is bodybuilding and being in the gym and I take it seriously, so I was overwhelmed and upset when first being diagnosed as well. I haven't been working out the last couple months and have been choked about it but I hope to go back shortly. I'm still trying to make my way and figure things out. They say the first year or two is the toughest. I know your mind is going a hundred different directions and you are worried about not being able to keep the same lifestyle you had, etc. You need to give yourself time to digest your diagnosis and try not to be overwhelmed with the "what ifs?".

Doctors are a good resource when it comes to meds and procedures but you have to take ownership of this disease. Do your research, access resources and support from this forum and give yourself time. You are going to see a lot of information and recommendations and a lot of it will be conflicting with other sources you access. Don't be discouraged by that. Take it in, categorize it and become familiar with the reasoning behind it. UC is a person specific disease and you will find over time that some things that work for you may not work for others and vice versa. A lot of information you find and opinions you hear may be dismissed by doctors as nonsense, etc. Remember, most doctors are trained in meds and may not give creedence to diet, alternative therapies, supplements, etc. so try not to become frustrated.

You were just diagnosed and you are going to have times where you get angry and wish you could just take something to make it go away and get back to your life. You may be feeling good at times and then have symptoms appear and become discouraged. As an athlete you are very in tune with your body and you know how it responded to things and when something was significant or not. Having UC means you will have to go through this process again. You'll need to relearn what certain feelings mean and to what degree it is good or bad, etc. It's frustrating at first because every symptom may make you think "oh great, that again, does that mean I'm going to be sick, does that mean I can't workout, will this go away, etc.". Do your best not be overwhelmed. You didn't learn how your body works overnight and it's going to take time to be reacquainted with things.

UC is something you will have for life but that doesn't mean you'll have symptoms all the time. The disease typically goes through periods of remission and flares. How often you flare is completely unique to you. Some people go years in between flares. Stay positive and know that life isn't over because you have UC. The support here is great and you are not alone.

Typical supplements that are recommended for UC are fish oil, vitamin C & D, Calcium, L-Glutamine, Probiotics (VSL #3 seems popular, I'm going to be buying it online myself to try it out) & Folate. You'll find a number of other suggestions through your research and through people on this site. Some find that certain diets work wonders for them. A popular one to look into is the Special Carbohydrate Diet (SCD). Remember, a lot of this will be trial and error over the long run.

As for meds, you will probably be prescribed something such as Asacol, Lialda, etc. to take to keep the inflamation down in your colon. As well, as was previously mentioned, rectal medications work well for a lot of us. Salofalk is a popular one and a rectal steroid enema may also be something to try. At some point you'll need a colonoscopy to see the whole colon (I don't know how the doctor could determine you had pancolitis if he only did a sigmoidoscopy). It would probably be best to have one done after things have settled down and you are off the prednisone and taking maintenance meds.

Don't be discouraged that things don't go away over night or that threre's no magic pill. I know that's what we want but we have to take the time to listen and relearn our bodies. Stay positive!!!

Proctor,
That was an outstanding post, from start to finish!

When flaring, it's also best to stay with the bland diet, low residue... so cooked veggies, rice, baked chicken or fish, etc... Best to avoid any foods which might irritate your colon (for me - tomatoes, spices, dairy, red meat, seeds, nuts, alcohol, high fiber, etc.). Hope you get back under control soon.

hm - welcome to HW! You've already had a lot of good advice; I can't think of anything to add! But this is a great place to ask questions.
Yes, UC is for life (unless you have your colon removed..) but - for me, I became a mother, took up horseback riding, started studying singing seriously and have advance in my my professional life since diagnosis. Oh, and have rebuilt two fixer-upper homes with my husband. So - right now, you need to get out of this flare, but then life will resume!

For you - and for Coach (Coach, I know I did answer this on one of the threads you were asking questions on yesterday, but there were several, so - sorry if we missed on that!)
VSL#3DS means Double Strength VSL#3. The Double Strength version is available by prescription only. For some of us that's a good thing, because prescription insurance may help cover it.
I first ordered it directly from Sigma Tau.... and for the past 8 months I've had the DS. It doesn't help everyone! As is true for so many things about this disease.

The best, many of us have found, is to keep a food diary. For instance - I also absolutely love root vegetables, but sometimes when I'm flaring they give me a lot of gas and don't sit so well. So... I eat fewer, take various digestive enzymes (along the lines of Beano, the one with the most name recognition).... see what bothers you - even if it hasn't before.

I've not had a lot of actual diarrhea in my 24 years, but I've had every other kind of stool imaginable. (Yes, occasional D, as we say.) I take Metamucil to bulk up my stools and kind of clump them together - makes them easier to pass. (Yes, even though it's sold as a laxative, I take it do basically do the opposite!)

Yeah, it is a rotten disease. Hang in there!

Hi:
I feel for you. I was diagnosed in April, but looking back I can tell now I've had it for about 3 years undiagnosed (ironically, I was in remission, had some cosmetic surgery, and began to flare badly as a result of the shock to my body and the antibiotics).

I was really afraid and hesitant about starting the steroids, because I was so freaked out about all the side effects I had read. But after flaring badly for 4 months I've finally started them. Do yourself a favor and just go for it. Perhaps since you are catching the disease at the onset the damage to your colon won't be as bad, and you can take a short course of the steroid.

I'm not getting better as quickly as my doctor thought I would, and we think it's because I waited so long to start them.

This is an awesome forum though. I'm really glad I found it because of all the interesting advice.

Stay positive!

Proctor: I loved your post. I felt like it was for all of us newbies!