Hey Quincy

I took your advice and requested that my GI test my stool sample - just dropped off my sample today. The nurse told me they do not routinely test for c-diff. - only if the dr. does a biopsy. Does this sound right to you? I have my follow-up appt. with my GI next Tuesday. If nothing shows up on the test and I refuse to go on steroids, what should I be discussing with my GI and the next course of treatment? Thanks!

Hi Quincy,
Thanks for your quick reply. I'm sorry I haven't gotten back with you sooner - I wasn't by my computer today. During the 5 years I was in remission I was only on6 Asacol per day. When my symptoms returned in April, there was a period of about 2 weeks where I was in limbo. My GI wanted me to be a part of a drug study using Colazol. He went on vacation and never left orders about alternate plans. The Colazal study had closed before I could be entered and I had to wait for his orders. He then put me on Lialda which I was on for 5 weeks. During that time my symptoms worsened. I asked to be put back on the combination of Asacol and Rowasa enemas. It had worked for me twice before in getting me into remission - even if it took almost a year the last time. I have been on the combination of 12 Asacol and a nightly Rowasa for about 3 months. There has been improvement but no remission.

He did order the C-diff test because I requested it and I am now waiting for the results. Like you, I really hope something is going on there so I can be treated. My symptoms include going to the bathroom in the morning at least 10 times in 2 hours. It always starts out as liquid and gas but eventually I have formed but loose stools. Sometimes there is blood, sometimes there isn't. I am tired a lot but not anemic. Sometimes I feel pretty achy. Unlike others, I can't point to any food and say it gives me problems. I have to wear a Depends because I can't control my bowels.

I quit taking the cinnamon long ago and am not on a probiotic any more. I couldn't see any difference. At my last doctors visit he said he is open to probiotics but has seen no evidence that they work. He said he would be willing to write me a prescription for them. I wasn't aware that probiotics needed a prescription. I go back to see my GI next Tuesday. I am pretty discouraged that the improvement has been so minimal. I always like reading what you tell others so that's why I appealed to you about my situation. Thanks much for your sound a reasoned advice.

Wow. Thanks for all the questions. It seems as if you really care for all of us on this forum. I will try to answer your questions now. It wasn't unusual for me to go 20 to 30 times per day. I would go grocery shopping and have to go to the bathroom at least 2 times while I was there. I might still have to do that but not as frequestly. I always go at least 3 or 4 more times throughout the day.

My Asacol dosing is 4 pills 3 times per day.

I was only on probiotics from Walmart. Just a generic.

I think I get enough protein and I have oatmeal or something similar in the morning for breakfast. My thyroid has been tested recently and everything is fine. My last colonoscopy was in June. My disease hadn't spread but definitely was back.

I try to live life as normally as I can. I teach piano lessons to 20 students. This week I have been substitute teaching for the music teacher in my school system. I feel under a lot of stress because there are times I am not near the bathroom and I have had to leave a class to go. The teacher I am subbing for had surgery and I have always subbed for her in the past so I know her routine. She knows that I have UC. I have to get up more than 2 hours early to see if I can get all my "bathroom time" out of my system before I leave home. I have to be at school at 7:30a.m.! Thankfully I only have 2 more days but I am very tired and very stressed. I say all this to say that I try to keep going and not stay at home all the time. Next week I will be able to relax more.

I left a message with the nurse at my GI's office to get the results of my stool test. I'm not sure how long it takes to get back the results.

Are you in remission now? Is there something specific that helps you and how are you so knowledgeable about the technical aspects of this disease? Do you do a lot of reading or is it entirely through internet research?
Thanks so much for your time. I appreciate all you say as it makes me think about this disease in a different way.

"My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!"

Love the logic, makes absolute sense

Annie76 -- I really hope it works out for you. My most recent flare up (2nd for me) which was a big one landed me in the hospital and they loaded me up with steriods and anitbiotics. Put me back on Predisone and Enemas, then a week or so later got back into remission. In total lasted about a month. I just started taking Imuran as the Asacol apparently didnt keep me under control as the 2nd flare up was an extremely painful bloody mess. Predisone really works for the flare up but yowza the side effects are terrible. Im extremely irritable now, constant headaches, outrageous food cravings, my ankles are the size of grapefruit (doctor said Pred causes this), and of course have to take Calcium supplement so my bones dont rot away. But im not flared, i just hope this Imuran works so can stay off the Pred.

Good luck Annie, hang in there.  

Okay so I'm thinking I shouldn't have taken the subbing jobs this week. My UC is much worse. I think I am stressing so much and not getting enough sleep. She asked me to sub for her 2 days next week and I am going to have to say no. Today I had 31 kindergarteners in the music room all at once and we had to make turkey puppets out of brown lunch bags and paper plates. Then we had to sing turkey songs (at the top of their lungs). I had glue everywhere on me by the end of the day! The 3rd graders had to get electric keyboards out and I had to teach them piano and then the 4th graders played recorders. But the kids really were a lot of fun.

Quincy, I know you are probably getting tired of the questions but I still have a few if you have the time. I eat oatmeal because of my high cholesterol. Is possibly eating this hard on my digestive system? And don't eggs have a lot of cholesterol? I would love to eat them. Should I be avoiding all raw fruits and veggies? I try to eat salads, apples, bananas, etc. I notice that you said you may have to cut back on them again. Is there any food that is actually good for UC sufferers?

Also, do you recommend any specific book on UC? There are so many, I don't know where to begin and quite frankly, some of them sound a bit out there. I am by nature a very skeptical person.

I think it is so neat you were an interpreter. I am completely deaf in 1 ear (high fever as a child). How did you happen to learn that skill?

Still haven't heard back on my stool sample.

I too have a wonderful husband and we have 3 children - the oldest is now in college. We also have a daughter who is a junior and a son in the 5th grade. I think they keep me sane and not so focused on myself. If I am involved in their activities, I don't have time to think about "poor me".

I hope you are feeling well today.

Hi Annie..good subs are hard to find...I know that to be absolutely true! So, you being on a list of any teacher will be utilised to the fullest. You know what you can handle, and it seems you do need the break...to rest. Your body can't go full tilt while trying to heal...and I know how much energy is needed to keep kids attention. Kindergarten...never interpreted at that level...I had the opportunity but didn't apply for the position. Besides..I know what they can do with snot....I got to see it all while they were en"gross"ed in the learning process..lol! :-b

I started a signing course twice a week just before I was diagnosed in '89...it was a lifesaver to have me focused on something I was getting good at while getting my health issues figured out. I still was doing hair casually...so me getting out to do something new was good. I met a few people who are still very good friends and clients. From signing classes, I applied for the interpreter program and got accepted. 2 years....then graduated in '94. I left at the end of the school year June of 2000. It was an exciting yet stressful time..but I'll admit i'm enjoying the language more now than ever before.

You must have quite an "ear" for the intricacies of music...I bet no one notices. Since you're completely deaf in that ear...I guess a hearing aid would be of no value?


Weight issues can be because of thyroid (but you said you've been checked and it's OK....did you see an endocronologist or was it just your GP that did the tests?) and even the fact that not enough nutrients are being absorbed from foods because of extremely fast transit time and diarrhea. You need certain foods and nutrients to lose weight...and if you don't get enough, the body will go into a "starvation" mode and lower the metabolism...at least that's how I understand it.

Vegetables, fruit, nuts and seeds can cause the digestive system to work a bit too fast because some of them cause the peristalsis to quicken...which isn't that great when having diarrhea. Fibres such as oatmeal can work the same, but tend to absorb and bind. But, if you don't have other foods to bind with, then it will have the opposite reaction. Especially with an already quick working gut that's not got enough other digested foodstuff to bind with.

Yes, eggs have cholesterol in them...food cholesterol...but they also have a counter cholesterol in the whites (which no one seems to ever talk about). They're also one of the most complete foods ever naturally made. One can also get them with added omega 3..so there's a plus for cholesterol. Have it with a grain bread you can tolerate and you're set for the day. I used to eat them with rice bread when I was having so much diarrhea...tasted pretty good and definitely lessened my symptoms since I can't handle high grain fibre.
At least an option.

Save your salads to an addition to a meal and in a smaller proportion to lessen the transit time.

Don't eat fruit or salads alone...best with something that will help produce a stool...

To help with cholesterol AND lessen bms...a fibre supplement will help.

Fruits can be eaten in sauce form for a while. Make sure no added sugar, however.

The other option would be for you to look up the SCD (Specific Carbohydrate Diet)....I think you can check it out online.
I have a friend who is truly 100% faithful to it (even made me a few goodies from it) and she's definitely had great success with it changing stool consistency and frequency. I don't follow it....but it does encourage eating and with a good balance of proteins.

If you can allow yourself a schedule in which to give time to heal and maintain some consistency that is lower in "distress"....change your food intake and see if that helps. Try to eat as balanced as possible...but for sure you need protein.

Do you eat chicken, fish, turkey..other meat?


I'm feeling better today....it's possible I've picked up something...my husband was having lots of frequency a few days ago...but it could be the too many dates..yumm, so good, but they're a laxative..LOL! I did use a Salofalk anyway. I also have a nice external hemmie...I'll see how the next day or so goes. Today was much better but I was very tired. Hmm. always ups and downs.

I best head off to bed...have to be up early tomorrow..um, today.

Maybe you'll get the results today...nice end to the week.
The waiting is most difficult.

Have a good one!
H

Hi Annie...I'm happy to hear the egg and toast worked for you. There are liquid eggs that are whites only (Egg Beaters I believe) as well as the whole eggs if you like them scrambled. I think really, the trick is to eat what you are able with the least amount of symptoms (especially if in a flare).

I'm not scientific in the food category as are others who understand/follow/believe the yeast/fungus or inflammation theories. I'm not saying there's no support that foods that can exacerbate symptoms or have yeast in them. The SCD does follow the theory of yeast overgrowth and has legal and illegal foods. It doesn't allow grains I don't think....but there are substitutions with almond flour to make recipes and many foods if you're interested. It's still worth a look-see for free on-line at least

Regarding books with information on IBD, I have an older book on UC/CD that's put out by the Canadian Medical Association (1999). There are a few good books available at this time that I've seen at Chapters. They do touch on pretty much all the subjects we talk about from explaining all the differences between CD/UC, meds to alternative treatments to different foods and diets, IBD support, and a ton of other stuff. Check the dates of publication.
There's tons of information on-line, many of which one can register to medical sites for free. Old Hat just made a suggestion of one site regarding 5ASA meds. I haven't registered on it as of yet...but that might prove to be a good one to bookmark.


Re: hair.....I'm a mobile hairdresser...I don't work in a salon, their homes are my "salon", at least that's how I'm licensed for business. I bring all the supplies/products but use their towels except for perms. I don't charge an arm and a leg...my prices are about average. I have only one very elderly lady...age 95... who is totally with it. I pin-set her hair and she combs it out the next day. She then treats me to popcorn twists and 7-up that she won at Bingo at the seniors home.. we talk about just about anything, and I mean anything. I've basically adopted her.lol!

Awesome about you having an interpreter in your church...that's a sure way to have Deaf coming to participate. I did religious interpreting as well when I as working. Lots of preparation work, very challenging, but I enjoyed it. I did have a lot of resources available to make it the best interpretation possible. Religious interpretation...controversial...there are some churches/temples/synagogues who require the interpreter to be of that specific religion as to give the "proper" message. Resources are always good and sometimes the Deaf who are regular members are always helpful to offer specific signs. Interesting stuff.

I sure hope you finally get the results on Monday. You've been quite patient. But, you get to sort of rest at lest and not have to get up at what time??? eeks. Did you have a far drive to work? You're one dedicated teacher..but most that I've worked with are. My SIL is a teacher....band teacher of grades 6 - 9..her first year back at doing that after teaching grades 2 and then 4 for the past 16 years. Seems to be going well.

Hope you're enjoying the weekend. If I find out the names of any books I'll let you know....unless others who are reading this thread can offer any.

quincy

Well I went to the doctor and he wants to change my meds. He said he usually sees improvement in his patients in 4-6 weeks with the Asacol/Rowasa combo. I have been on the maximum dose now for 3+ months.

He wants me to consider Imuran or Remicade. He prefers Imuran because it is an older drug and he has used it in his practice for 20 years. Any thoughts on this? He told me to go home and think about it and research the drugs on the internet and then get back with him.

Hi Annie....one can't say you haven't given it the best shot with 5ASA meds...and if nothing else is going on that your doc can detect through stool testing, maybe it's the meds that are causing some of the symptoms (side effects of the 5ASA meds).

I've never been on imuran, but many on here have been/are...I have a friend who is on imuran for autoimmune hepatitis and is doing well on it. I think it's a trial and error regarding meds. Frustrating as it is it seems you need something else at this moment. The next step up is imuran or 6mp before going to Remicade. Did you go through the gammet of the other 5ASA orals such as Pentasa, Colazal..etc? or just asacol?

I think you should put out a separate thread enquiring from others who have used imuran, you'll get a response there. Reading the side effects can be scary, but they're that for any med because they list them all, even side effects with placebos which is interesting. I totally freaked out when I read all the ones for Effexor XR...but I only had some nausea for a few weeks after taking it...then nothing.

I've had no side effects that are obvious from using 5ASA meds except maybe some exacerbation of symptoms for a short time after starting them...but really nothing for almost 19 years and using aspirin for almost my whole life...so, it clearly agrees with me, but for others it's like poison.

When are you getting back to your doctor regarding starting them?

quincy

Hi...totally frustrating for the meds to stop working. It's often suggested to try the steroid enemas instead of the 5ASA .... for some they work better. You might want to ask for a script and refills of that.

The other thing......maybe the high dosage of Asacol is contributing to some of the symptoms? You could try to lower the dosage. With some, 12 is way to high, 9 or 8 is best..etc....
With some, Colazal works better...there are still other 5ASA meds worth trying before you go for the imuran if you're up for the experiment.

Your doctor seems up for some options..

How are you this week compared to the past week?

quincy

Hi...one positive...you're improving.

I would try the other 5ASA meds orals such as Colazal or Pentasa and use the steroid enemas in conjunction with the Rowasa....all before going on the immunosuppressant meds.
I'd stay off pred indefinitely...to me you haven't exhausted the other options yet.

You could also try taking the Asacol twice daily instead of thrice.

You could use the steroid (try to get foam) in the morning and the Rowasa at night...maybe for a week or two and see if that helps. The other option would be to use the Rowasa one night and the steroid the next...etc.

You do have options at least..and since you're improving...hang tough. If you were getting worse....that would be a sure sign you can't take the 5ASA meds.

What probiotic are you taking again?

quincy

Hi Annie....I'm interested in how you're doing and if there are options that I can think of, then I'l pass them on. I think having options helps to lessen the desperation and frustration....and since your doc is open to your participation on an opinion level...i'm sure he'd be willing to write a few scripts before the immunosuppressants/biologics.

Let me know what the outcome of the discussion is.

Hope you're having good Thanksgiving weekend.

quincy

Hi Annie...Wow, 10 times in the morning..still... Maybe Sunday mornings you can take imodium to help get you through.

It seems that Colazal is the one geared for left-sided UC. Some colons may not have the correct ph for the asacol coating to be broken down....there's a few who seem to have whole caps coming out. I've printed the info regarding the dispursion of 5ASA oral meds....interesting to say the least.

Sad about your mom and that holiday times are difficult. I can relate to the cooking part..my mom was an awesome cook and I always looked forward to her special dishes. I don't do holiday meals here, but we do have them at the in-laws' who have the room (husband's side). We all LOVE to eat...and with each of us bringing a dish,it's a good celebration.

Our Thanksgiving is the second Monday in October. We've since stopped the family get-together, but my husband and I have started our own if he's not working.

It seems I have been a week ahead with the US Thanksgiving...it's this coming week..d'oh! Of course you'll miss your mom...it seems she's left great memories for you all to share and to be thankful.

Let me know how the discussion with your doc goes.

quincy