UC Diagnosed in August - Questions and What to Expect

Wow, ok, you have lots of questions. First of all, I am so sorry for her diagnosis, but this disease is managable for most people. But as you will hear from everyone, people are different and your wifes response to drugs and diet will be different. How much of her colon was affected? I will answer all of your questions with my personal experience, but you will have to work out what is best for your wife and what is do-able for your family.
1. I don't generally have pain with my UC.
2. If you have an auto-immune disease, you are more likely to develop another one. I have kidney stones as a secondary condition to my UC. The body won't get rid of the calcium so it gets deposited in the kidneys. Others on here have other issues, that just happens to be mine.
3. everyone is different. My remissions can be gained through drugs and diet. Others don't have that luxury.
4. Let her rest.
5. You will get a lot of conflicting info here....what works for me is gluten and dairy free. No fiber for me!! Makes me gassy and miserable.
6. In my opinion, the prep for the c-scope is very hard on your colon. That is your wifes call.

Has she been checked for C. diff? was she on any antibiotics recently? Does she notice more symptoms (gas, bloating, nausea) after eating certain foods? And is she only on prednisone? And how much of her colon was affected? Did they do biopsies? The more info you can post the better.

1. A whole lot of people experience pain with their UC. I never have.

2. Tough question. As was already said that many with autoimmune diseases often come down with another one. This is my second one. My first one is in remission or you could even say cured. There is a reason why we get UC, although medical knowledge doesn't know why but it can be associated with other sicknesses which trigger UC.

3. Both. More conflicting information.

4. In my case exercising makes me worse and I am better when I rest but I have to live my life too. Rest is probably not going to cure UC but may make it better.

5. There is a whole lot of conflicting information on diet, an ubelievable amount, and that's from the experts too. I think you just have to do trial and error and see what works best for her.

6. I wouldn't change the colonoscopy date. It may be better to wait that long so that they can compare the changes.

Welcome to the board, and sorry to hear your wife has uc. I can speak only on what worked for me and what I experienced earlier this year when I was diagnosed and treated.

In the short term your GI will identify exactly what your wife has, and work on getting it under control. Depending on exactly what your wife's colonoscopy identifies (the extent and location of the inflammation) a medication treatment will be introduced. Generally, you start with high-dose medication or medications to get things under control (when you are under control it is known as being in remission). Unnecessary medications are later tapered off.

In the long term, you take maintenance medications and return to a nearly normal quality of life. Mornings are rough for most people with uc, an urgent morning poop or two. Then, for most, the rest of the day is fine. If you have to poop again there is generally enough warning.

1) Some people have pain with uc, others do not. I am also lucky that I do not have any pain.

2) I only have uc, and nothing else. There are some studies out there that having uc does make it more likely than the general population that another auto immune system disease might popup in the future, but I remember the odds were pretty low. I wouldn't worry about it.

3) Everybody responds differently to uc treatments, so will your wife. Your GI will try a series of medications to get your wife's uc under control. Once the uc is under control, it is likely she will have a lot less bms a day, and a lot more controllable ones (there was a post about how many times do you go a day and most people said 1-3 times a day). It will take some time to find the right medication, dosage, and for the medication to fully take effect. It will be a bit of a trying process but once it is found things will be easier.

Most people on the board are on some sort of daily medication which keeps our uc in check. Most GI's will say that your diet has no effect (positive or negative) on uc. However, keeping a food diary is a good idea. Your wife needs to listen to her body and if some particular food consistently bothers her then avoiding it is highly recommended. There are some folks on the board who use only diet and natural supplements to control their uc, and they can provide additional information about what works for them (everybody is different and there is no guarantee it'll work on your wife). I believe just about everybody starts with the meds, and some switch to diet-only later on.

4) I agree on resting. Once things are under control with medication, your wife can slowly return to normal her exercise routine.

5) There is no absolute rule on what one should or should not eat while flaring. Most uc people know what food items bother them when flaring and they avoid them. Until the medication gets your wife under control, I would avoid high fiber foods, foods that are hard to digest, and spicy foods. Try bland things.

6) I see no benefit in waiting a long time till the next colonoscopy, if anything it only prolongs the suffering until it is identified and treated. Maybe they can schedule you for an earlier one at a different hospital? Can't hurt to ask.

Best of luck to you both. Don't be afraid to ask us anything as we are not a bashful bunch on these matters,

I would say the odds are very good that medications and treatment will get your wife's uc under control. Don't worry about the worst-case-scenario unless there is reason to.

Some people respond quicker or slower to the medications. I started seeing reductions in the number of bms I had per day within 2-3 weeks of starting the medications. It is going to be a gradual reduction in the # of bms a day over a number of months. I started with 6-10 bms a day at all hours of the day and night. Each month, the number of bms a day was reduced. In the beginning there is lots of intestinal inflammation which makes you have to go often. As that inflammation is reduced you go less frequently. I would say it took me about 3 months until I was back to just a few controllable bms a day.

bojamba,

Only during my worst flare did I have major pain, that was years ago.  I found a heating pad very good on my stomache and back.  Asking the doctor for an antispasmatic medicine(bentyl) and antidiahrea medicine(lomotil) to slow things down in the colon and stop the spasming that causes the pain. These two medicines will also be helpful in the amount of trips to the toilet, I found them great especially when you have to care for young children.

Since being diagnosed 18 years ago I have learnt so much through this forum.  The more reading here the better informed your wife will be about this disease.  We know more here than most of the doctors out there about UC only cause we're living with it. 

I agree about getting rid of the bread and trying gluten and wheat free.  Veggies are good but raw ones are extremely hard on the colon and will cause alot of gas and pain especially when flaring, lettuce I think is the worst when flaring, thats probably why its called roughage. 

Fruit is the same except bananas which are good for most of us.

Avoid fibre until she feels better, Metamucil is a different fibre and beneficial for bulking the stool and absorbing the water in the colon.  I take it before bed.

Was your wife given any 5asa medication (asacol, salofalk, mezavant...), worth a try before using predisone regularly.  Prednisone comes with alot of side effects good to read up on it.

Was she given any 5asa enemas or cortisone enemas (hycort, cortenema, cortifoam...)?  Very helpful, probably better in controlling symptoms than oral meds but both are needed to get things under control.

Does your wife take a good quality probiotic daily or a couple times a day when flaring?  The probiotics add the beneficial bacteria back into the colon without that bacteria you will experience alot of diahrea. Both of the ones I take have over 50billion bacteria per serving, and both have different bacteria strains.

Rest when your body needs it and when feeling better then exercise.

Welcome to the family here, you'll find comfort knowing you can write to others and get pretty immediate responses and support.

Please stop diary, it's the worst for our guts IMO. Maybe try just very weak soups i.e. chicken soup or broth, applesauce, maybe mashed potatos, everything really soft and gentle for a while. I would NOT do white bread at all. Gluten free maybe when things have calmed down.

I agree with the other person ?, what about other medication from the doctor like pentasa, lialda, asacol, colazal these are 5-ASA and you will need rectal medication. Canasa or rowasa, did they prescribe those?

hey bo -

1 - yes, the pain was immeasurable - ever been kicked by a horse - felt 10 times worse than that - having a sheet againt my stomach was too much sometimes -
2 - i have asthma which is also an inflammatory issue - my change of diet has helped both -
3 - remission is elusive for many - no magic one-size-fits-all answer - diet changes have given me my life back - am i cured ? only God knows -
4 - both - initially, rest would be the primary goal - her body needs to heal - lite stuff like yoga, stretching, short walks, etc - nothing too extreme - i gave myself permission to sleep -
5 - individual needs can vary widely - what worked for me was simple, fresh, real food - veggies always, steamed and juiced - some low sugar fruit, organic meat, and lots and lots of good clean water (we have our own well) - she will have to figure out what works for her - i researched blood type diets - i'm o+ and the recommended foods were almost exactly the same as the allowable foods from the food intolerance testing i had done -
6 - another colonoscopy ? to me, something wrong with that - and no other drugs besides pred ? huh ??