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Update on Bratcat

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Ulcerative Colitis
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Posted 10/18/2007 6:00 AM (GMT 0)
Bratcat has been flaring for almost a month. She was put on 40 mg prednisone almost 2 weeks ago. When the wasn't any great improvement, the doctor upped it to 60 mg about a week ago. Wednesday when we checked in with him, he told her to stop taking her asacol and rowasa (he thinks maybe she is getting an adverse reaction to them now). He sent her for bloodwork to check for C.Diff and to see if she can metabolize 6-mp. She also has to give a stool sample to check for C.Diff. We should get the results next week. He also wants to schedule a colonoscopy in about 2 weeks to see how inflamed she is and to see whether or not it has progressed to Crohns. Because school starts so early (7:15) and ends early (2 pm), Bratcat has only been to a few classes one day last week (in the past month). She goes to sleep each night planning to go to school the next day. Then she wakes up and had to wait for her digestive system to settle. Most days it doesn't really settle until after noon and by then she is down to the last 2 classes. Her teachers (and the school) have been great. They keep in touch and she is able to get some of the work by email or by me picking it up at school. If school went from 1 pm to midnight, she'd be there everyday. It's amazing to see the difference throughout the day how she feels. I never know how much I should "push" her to try to get to school (at any time of the day, not even for 1st period). Sometimes she will come with me during the day to pick up my work (I work from home) so she can get out and move. I know her illness is very real (I've seen and heard it!) but I also know sometimes it's hard to get back into the routine when you are not feeling 100%. Last week when she went to school late, her stomach still hurt but she wasn't having to go to the bathroom constantly.

We are worried about switching medicine. When it was working (or maybe it still is), Bratcat was very happy with the asacol and rowasa. 

I really hate this darn disease!   mad   And I'm not even the one whose body has to deal with it. It sucks seeing your child hurting and not being able to do anything about it. sad  

Thanks for listening. Bennie 

Posted 10/18/2007 11:21 AM (GMT 0)
Bennie, I know what it's like to see your child sick and there is nothing you can do about it. I know for me, I would do anything to trade places with my son in a heartbeat (except of course I would keep my Uc too!). My son doesn't have Uc but he's got asthma. Which can be super scary but I know what you mean about not being able to do anything.

Just for clarification, Uc can not progress to Crohns. If Bratcat's diagnosis changes to Crohns then it was Crohns all along she had instead of UC. It would just be a misdiagnosis which actually happens quite frequently because Uc and Crohns (colitis) mimic each other so closely that it can be hard to tell the difference. Hopefully this is not the case because at least with Uc there is a cure - colon removal unlike with Crohns disease.

Tell her we are rootin' for her and we wish her well.
Posted 10/18/2007 11:45 AM (GMT 0)
Hi Bennie,
You have been wonderful to Bratcat and I am sure she appreciates it. My parents have been my rock through this whole ordeal--surgeries, tests, the whole nine yards. I couldn't have done it without them. Does Bratcat know you are on this forum? She might like to start posting here (or somewhere else, if she is more comfortable). It can be hard to go through this alone--it is one of the reasons this forum has been so helpful to me--I feel much less alone than I did when I was at school. How is she dealing with the being out of school aspect of things? I had to take a semester off of college (after surgery) and it was really hard for me. I don't mean to project my feelings onto her, but she might need an outlet of some kind. Also, if she ever wants to email with someone who has gone through similar school issues, etc--just let me know. She is lucky to have such a caring parent :) Please keep us posted.
Posted 10/18/2007 12:11 PM (GMT 0)

Thanks Sherry and Katie for your support.

Sherry, I know if she has Crohns it's been there all along. She had an endoscopy which came back fine (although the doctor said he couldn't see one small part between small and large intestine). At the time everything on both sides was good.

Katie, Bratcat comes on to read the forum all the time. She doesn't post often. This forum has been a godsend to all of us. Thanks for the offer to talk with her. I am sure she will read this but I will let her know you offered.  

Posted 10/19/2007 4:41 AM (GMT 0)

Bratcat has been off asacol for 2 days because the doctor thinks maybe she is responding negatively to it now. Honestly we haven't seen any positive change (I'm not sure if there is a negative change either). How quickly would she see a positive change if her body was rejecting the asacol? Would it be worth asking the doctor to put her back on the asacol? Should she just go ahead and start the 6-mp if her bloodwork comes back saying she is capable of handling it? I hate not being able to have any straight answers for this illness. It would be so much easier if everyone responded the same way to medicines and if one stopped working, you would know that the next one would do the trick.

The prednisone doesn't seem to be helping tremendously either. She is getting better but not very fast (and she is at 60 mg). We do notice that this time around, she has gotten all the side effects (moon face almost immediately, some breaking out, aches and pains everywhere). She had very few side effects the first time and they came almost at the end.

On a positive note, she got her school pictures back today (she had them taken just before she got sick).  They came out beautifully so she doesn't have to worry about having retakes while on prednisone. 

Posted 10/19/2007 2:18 PM (GMT 0)
Hi Bennie....how difficult it's been for you to watch Bratcat and see her suffering as she is. It's definitely possible that she's sensitive to the 5ASA meds.

I hope the prednisone will help get her back to feeling better. If she does have CD, maybe considering Remicade could be on the list.

Is she on any probiotics? I definitely suggest she start some.
As well, a fibre supplement of some kind will help with diarrhea, etc.
A medication such as dicyclomine could help with cramping...a low dosage to start for sure.

Please let us know how she's doing.

Awesome news about the pics. No matter how crappy we feel, we never want to look as though we do...and with school pics, hard to look back and be constantly reminded.

Your support and love for her is awesome.

quincyxx
Posted 10/19/2007 8:16 PM (GMT 0)

Ok, so I spoke with bratcat's doctor. We are holding through the weekend. All her bloodwork has come back ok. Still waiting on the c.Diff results and the stool sample results. He is concerned because it will take several months for 6-mp to start working (if she goes on it) and she still isn't really responding to the steroids (other than all the side effects).  So today he mentioned Remicade.

So we wait through the weekend. Hopefully Monday he will get the rest of the results back. He would like to do another colonoscopy just to see what is happening there. He is leaning towards Remicade. I did ask him about people who start remicade, stop, and then try to start again and how often they don't respond. I did ask about long term effects of all the drugs on a 16 year old girl. He understands and has been trying to answer all my questions.

I get overwhelmed trying to figure all this out but I don't have the extra problem of having the disease myself. I bow to all of you as adults having to figure this out! You are my heroes!!

Posted 10/19/2007 8:54 PM (GMT 0)
Bennie, as a daughter, I just want to let you know you are doing such an amazing job. My parents are amaziing and supportive, but they are not as involved as you are. Bratcat must know how lucky she is. That said, please keep posting--we are here for you and bratcat for whatever you need. blessings and love.
Posted 10/19/2007 11:59 PM (GMT 0)

Bennie,

My GI's daughter who is now in her early 20's has had Chrones for 10 years and has been on 200 mg of imuran daily for the last 10 years.  She is apparenlty now in med school and hopes to find a cure for IBD.

Now that is encouraging.  Also I started imuran four months ago.  It is finally working and after almost three years of constant pain and exhaustion etc.  I think I may be on the mend.

Posted 10/22/2007 3:02 PM (GMT 0)
Bennie - how is bratcat today?
Posted 10/22/2007 3:25 PM (GMT 0)

Hi dakotagirl, thanks for asking. She is doing OK. She went to school for the last 1-1/2 hours on Friday and I am bringing her to school in a few minutes today so she will have a little more than 2 hours of class today. She was up and about with me this morning and we stopped home for her to eat some more and see if her stomach cooperated. So far, so good. I did wake her up a bit later today. Maybe that helps. Maybe it has something to do with the amount of sleep she gets.

I just scheduled her colonoscopy for next Tuesday (10/30). The doctor could have done it this Thursday but unfortunately Bratcat has an important meeting for Girl Scouts this Wednesday night and the prep would have interfered. And the meeting is one that really can't be missed.

I haven't called the doctor yet today because I am going to be in and out of the house and I hate to miss his call back.

I still don't know what we are going to do about her medicine. I really would rather not see her start Remicade just yet. I don't know if it's worth trying to restart the Asacol that was stopped last week. I guess if the labwork comes back ok she will start 6-mp but that still doesn't help right now. She can't stay on the high dosage of prednisone too much longer. Maybe it is finally starting to work.

Any suggestions would be appreciated. Your good thoughts are truly valuable.

Posted 10/22/2007 4:03 PM (GMT 0)
Did she stop Asacol cold turkey? I hate she is having a tough time. You are an awesome mommy!
Posted 10/22/2007 4:29 PM (GMT 0)
bennie--sorry i can't be of more help but my prayers are with bratcat. trust me, i am having a terrible flare right now and i can tell you how nice having my mom (even as a 23 year old) has been. bratcat is so lucky to have you, please let us know if we can be of help!
Posted 10/22/2007 4:52 PM (GMT 0)
Glad to hear that she's ok - and not any worse!

I know that sleep affects me BIG TIME! about two weeks ago I decided I'd try to be "more productive" and get up an hour earlier than I have been. Whoops! Almost sent myself into a flare :( After a week of being back on my "normal" (for now) sleep schedule and a few naps, I'm doing better - knock on wood!

I can't believe that some schools start kids SO darn early! Knowing that teenagers are night owls, why on earth would you require them to be there SO early! I read somewhere that teenagers stay up later because of some hormonal issue - so it's not just them being difficult ;-)

We'll keep thinking positive thoughts for her!
Posted 10/23/2007 5:30 PM (GMT 0)

Bratcat has been to school for about 1-1/2 to 2 hours for the past 3 days (Friday, Monday, today). Not great but at least she is going. The weekend was OK (I think alot has to do subconsciously with stress). Yesterday was pretty good. 3 bathroom trips in the morning before school and no real pains. Today was more frequent in the AM but it did settle.

I spoke with the doctor yesterday. Her test result for c.diff came back negative. The bloodwork to see if she can metabolize 6-mp will be back tomorrow. He decided to let her start back on asacol today (only 6 pills total instead of 12). He wants to lower her prednisone dosage but doesn't want to do that at the same time as reintroducing the asacol (in case there is a change we won't know if one of the meds caused it).

Bratcat is scheduled for another colonoscopy on Tuesday so she will be out of school next week Monday and Tuesday (can't wait for the prep day sad ).

Bratcat does plan to go to work this afternoon for a little bit (maybe 2 instead of 3 hours).

Maybe she's just one of those people who takes longer for prednisone to work on than most.

Thanks for keeping an interest in her. I hope all of you are feeling well or starting to feel better from your not so good days!

Posted 10/23/2007 6:11 PM (GMT 0)

Bennie,

I am curious to know if Bratcat's school has some type of accomodation plan in place for her.  I am a former School Nurse and to prevent the school from "retaliating" against students and their parents in regards to the number of days absent I would push for a 504 plan.  I am from MN so am unsure if your state provides the same plan.  It is for children that do not qualify for Special Ed services but have a medical diagnosis that affects a life learning activity, such as learning, walking, hearing and etc.  My son spent 2 1/2 months wheelchair bound after a snowmobile accident and I had to request the 504 plan due to the fact that a teacher had a problem with him missing 1 1/2 hours of school to go to physical therapy (to learn how to walk again)!  (I was no longer employed by the district when this happened.)  The plan essentially said that he will be allowed extra time to wheel his wheelchair between classes and that he will be attending PT 3-5 hours a week or as indicated by his physical therapist and surgeon.  School districts do not like telling parents about the 504 as they do not receive any state or federal funding to provide the accomodations, whereas Special Education does receive state and federal monies.

I hope Bratcat is feeling better. 

Kim

Posted 10/23/2007 7:27 PM (GMT 0)
Sounds positive Bennie...it's great BratCat is getting out and to school and that she's seeing some improvement. I think there are many variables as to why meds take their time in working.

Thumbs-up to the negative c.diff result.

Hope you both have a feeling-good week.
quincy xx
Posted 10/23/2007 8:03 PM (GMT 0)

Kim, yes we have a 504 plan in place for my daughter. In fact our school pushed for it (I think it helps cover them too). We went back and forth a bit trying to get what was acceptable to both sides but in the end we are happy. It covers an extra 50% time for testing, testing in a separate room (with other 504 kids) if necessary, allowing food and drink in class, and unlimited bathroom usage (and no penalty for lateness). With the help of a letter written by her doctor, bratcat determines if she is up to participating in phys.ed on a day-by-day basis. The school also lets her decide if she wants to take her tests in a smaller, extended time room. All I have to do is write a note. Last year she took a few tests with everyone and few tests with the available extra time/bathroom privileges. We also registered her "disability" with CollegeBoard (who administers the SATs and AP tests). She has the same coverage with them as she does within the school. If those tests are taken in our school district, she can still decide if she wants/needs the extra accommodations. She took an AP Bio test last year out-of-district but had registered prior to the accommodations approval. Luckily she was feeling great and didn't want any accommodations.

Because she was out for 9 weeks last year and missed almost the whole 1st quarter of school, several of her teachers chose to give her an NG (no grade) for that quarter (since they had very little tests, quizzes, homework, etc to base a grade on). It worked out well because they don't average in a NG quarter and she isn't penalized. I am not sure how the teachers will deal with it this year but I did email her guidance counselor to be aware of it. Since the quarter ends in 2 weeks we will see what happens.

Posted 10/23/2007 9:55 PM (GMT 0)

Bennie,

Kudos to your school district!  I was told by my school district that I advocated too much for the children and their families, hence the reason I resigned. 

Kim

Posted 10/23/2007 9:59 PM (GMT 0)
School starts too early-- that's a large part of the problem! Glad to hear that Bratcat does have the 504 plan to fall back on. I would advise rest as much as possible so that the meds kick in. That's definitely what helped me thru my worst flares, in addition to the meds + folic acid tablets. My hope is that a few more weeks will prove Bratcat can still get to remission via 5-ASA meds. Then some caution is required re strenuous activities. I really don't think that UC & heavy workouts are compatible-- at least not for every patient. Best wishes to all at your house! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)
Posted 10/24/2007 4:58 PM (GMT 0)
Kim - advocating TOO MUCH for children! As if that's possible! Too bad for that district - I can tell they're missing the point of what they do. So sorry to hear you had to deal with that.

Bennie - I hope that bratcat continues to improve! Even a small step each day means SO much!
Posted 11/1/2007 4:12 AM (GMT 0)

Bratcat had another colonoscopy yesterday (first one was a year ago when she was diagnosed). Her prep day went pretty well. She didn't get as nauseous as last year and didn't throw up. She took the phospho-soda. It helped to keep it cold and use a straw to drink the liquid. She also limited her food intake the day before the prep. Less to come out!

Her colonoscopy showed inflammation and ulcers. No surprise there although the doctor was hoping it looked better because she's been on prednisone for a few weeks. He took some biopsies but says he doesn't see anything that would be a red flag.

She started 6-mp today. 1-1/2 tablets to start. Bloodwork in one week. Then one week after that. He upped her asacol back to 12 pills a day. After we speak with him at the end of the week (to find out about the biopsies), he will probably begin to decrease her prednisone. Told her to stop the enemas for now.

The biggest concern is keeping her flare from getting worse until the 6-mp kicks in. She is feeling better each day, just not enough to say the prednisone is doing the trick. She didn't go to school today but mostly because she was so wiped out from the past 2 days.

Thanks to everyone here, I was able to have a very detailed conversation with her doctor yesterday about her UC, 6-mp, and everything else. He even tried to explain to me about 2 parts of 6-mp (6-tg and 6-mmp), T-cell, B-cells, etc. Even though most of it went over my head and I will now have to look it up on the internet, I like that he doesn't make us feel like he knows everything and has all the answers just because he is a doctor. I was able to ask intelligent questions and get straight-forward answers.

Posted 11/1/2007 1:51 PM (GMT 0)
Bennie,
I am glad to hear they didn't see anything really serious with the colonoscopy. I just wanted you to know that you are a real blessing to your daughter and I wished all mothers could be like you. I have 3 daughters of my own and they are my life. At 34 and just starting to go through this I couldn't imagine doing it in my 20's- she is doing fantastic. Great job and God bless everything you are doing for her!
Posted 11/1/2007 3:28 PM (GMT 0)
Glad to read that Bratcat made it thru the c-scope prep & procedure with no glitches. Hopefully, the doctor will get her meds right so that she progresses to remission. It's possible that the 2 types of retention enemas were cancelling each other out. In my experience the hydrocortisone jobs relieve urgency, no. of bms daily, & D, whereas the Rowasa helps with the 1st two problems (and slowly) but contributes to liquidity of the bms. This has been a problem with at least 1 of the oral 5-ASA meds, too, Dipentum. My doctor would never admit it perpetuated D-- until Colazal came on the market! (Rather exasperating!) Best wishes to Bratcat for getting back to school ASAP. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

Posted 11/1/2007 5:42 PM (GMT 0)
Hi Bennie...awesome that the c-scope went well for Bratcat. It does help she has a good rapport with the doctor and that it doesn't leave you more frustrated than hopeful.

I hope her new meds will work for her...

Keep us posted.

quincy
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