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Plan for my daughter: Holly

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Crohn's Disease
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Posted 2/23/2009 2:55 PM (GMT -6)
Hi All,

<<<Once again, I'll start with a recap, for those who haven't followed my other posts. My daughter is 15, and has Crohn's/TI. She had and abscess with a fistula in December. Hospitalized for 10 days. Had a CT drain, released and just finishing up Prednisone.>>>

Hi All,

I just copied and pasted the recap from my last post. Sometimes these theads get so long, that I thought better to start a new one. 

Our GI called today. She was extremely good about outlining a plan for Holly. We have been very lucky to have this Dr. Not that we haven't felt helpless and hopeless at times, but she has done everything that she could.

She gave me a pretty clear picture of things, after conferring with the Radiologist and Surgeon. THe Surgeon states that the stricture is managable at the moment. Until she starts showing severe symptoms, then leave the stricture as is. She recommends staying with our original plan of Imuran. She's going to watch the blood work carefully, and stay in close contact. If it seems that Imuran isn't doing anything for her, then the option would be Remicade at that point.

Her bloodwork came back very good. The big concern is healing the fistula. That's the only part that the Dr. seems worried about. I hope that Imuran can be effective enough. I know that Remicade is better for that purpose, but I'm very afraid of the long term risks right now. Even the Dr. admits that it hasn't been around long enough to form a concise opinion. 

So that's about it for now. I just hope that things can start improving. It's been such a stressful 3 months or worry, and trying to make the best decisions. I know this is nothing new for everyone here.  I know theres going to be many more difficult times ahead, even more difficult decisions. I just don't want to ever feel like it's hopeless.

I better stop here, I'm starting to get my usual longwindedness.

Thanks, Tom.

Posted 2/23/2009 5:27 PM (GMT -6)
A lot of people do pretty good on Imuran..... I've had a couple of rough spots... but... I'm doing good, now... and I take Imuran...
Posted 2/23/2009 5:49 PM (GMT -6)
Hi Tom sounds like a plan for now and will help make some of the decision making over. I am sure Holly's Dr. will keep a good eye on her .Has she mentioned when the med will start? Best of luck to Holly. I will be looking to see how she does some people seem to do very good with the Imuran. lol gail
Posted 2/23/2009 6:11 PM (GMT -6)

Celey and Gail,

Thanks, it's like you knew that I wanted to hear this. She starts 25mgs tomorrow. Forgot to mention, the GI did say that "we know the disease is aggressive". I'm not sure if she meant the symptoms or if she was refering to Holly having a now severe case. I had so many things running through my mind, that I didn't ask her to elaborate. As I've mentioned before, one of many things that has alway confounded me about this disease, is how to tell if someone is mild, moderate or severe. 

Tom.

Posted 2/23/2009 6:45 PM (GMT -6)
Hi Tom Severe is the complicatios of crohn's so in Holly's case she probably has severe. I will say that people with severe crohn's seem to do OK with the Imuran . I know of one persen that had it very bad and after 3 Remicade treatments they had a ostomy for awhile and had it reversed and was put on Imuran and last I heard was doing very good. Mine was severe as well. So things can and do improve... lol gail
Posted 2/23/2009 8:34 PM (GMT -6)
There's probably a lot worse than Imuran, here's wishing Holly the best of luck with it!!!

:)
Posted 2/23/2009 8:58 PM (GMT -6)

Hi Gail,

I guess I shouldn't focus on the label of Mild or Severe so much, as just keeping it under control. I hope your right about Imuran, I guess we'll just have to wait and see. Also forgot to ask the Dr. if she should continue with Pentasa. I'll have to phone the nurse tomorrow.

Thanks, Tom.

Posted 2/23/2009 8:59 PM (GMT -6)

Hi Pb4,

Thanks for the best wishes. By the way, she did start Natures Way Reuteri a couple of weeks ago. Thanks for the recommendation on that.

Tom.

Posted 2/23/2009 9:29 PM (GMT -6)
Do you know whether your daughter's fistula is a result of her stricture? Is it between two loops of bowel? With regards to the pentasa, I suspect your GI will want her to continue on her maintenance meds for at least three or four months as it takes that long for the imuran to become fully effective. After that, there is some research to suggest that, in some people, the two drugs aren't a good fit and that people actually do better when they come off pentasa. I'm in that sub-group and had to stop taking pentasa last fall. I had been on pentasa for many years and was started on azathioprine in 2007. I felt I never really got the full therapeutic effect from the azathioprine until I came off pentasa last fall. I came off the medication because my liver enzymes were climbing and we wanted to eliminate any drugs that weren't absolutely necessary. But since coming off it, I have felt even better.
Posted 2/24/2009 5:32 AM (GMT -6)

Hi Belleenstein,

I'm not sure just what the fistula is a result of. They've never said whether the stricture caused this. The fistula is between two parts of bowel. Their must be a reason you're asking. The GI said that it goes from a bad section of bowel to good. As I indicated earlier, I got the impression from our GI, that if it wasn't for the fistula right now, things would be looking alot more positive.

I suspect that she will want her to stay on Pentasa for awhile as well. I just don't think the Pentasa really did anything, especially after seeing how badly imflamed her TI had become. I'll ask about the interaction between the two. I'm still very surprised that in a matter of a couple of months, (since her last blood work, which was quite good), she got so much disease activity, and an abscess, fistula and stricture along with it. 

Tom.

Posted 2/24/2009 8:03 AM (GMT -6)
Make sure that your dr. is using the Prometheus Pro predict Metabolites test. This will show if she is in the theraputic level with the imuran. It will also show any toxicity. I used this while I was on imuran, and we kept upping my dose and doing draws every 6 weeks until I got in my theraputic level. I had to take 200 mg of imuran to get there, but I did notice a difference. So if you are going to take it, you want to make sure that it is doing you the most good that it can.

Have her take it at night as this will help with the tireds and nausea. Imuran has an excellent track record of keeping patients in remission.
Posted 2/24/2009 11:16 AM (GMT -6)
Tom,
I really hope the Imuran helps your daughter. She will have to go for very regular blood tests while on it. And try not to lose faith in it as it takes 4 to 12 weeks to really work. It can really cause a lot of nausea when you first start it too. But she seems to be startign at a farely low dose so that will probably help.

I have started Imuran for the second time just a couple of weeks ago. It didn't work the first time for more than a few weeks, but I think it was because my flare was just too far advanced. I am holding out hope that it will work this time since I am starting fresh so to speak. I am taking 150mg.

My schedule for blood (CBC and Liver profile) is once a week for 2 months then every 2 weeks for 2 months then monthly. Supposedly if you are going to have a bad reaction from the Imuran it is more likely to happen at the beginning.

Good luck with this. I hope she get srelief soon and that you can stay away from the biologics for now.

Tanya
Posted 2/24/2009 6:13 PM (GMT -6)

Hi Crohniemomx2,

I'm not sure if we have prometheous testing in Canada, I'll have to ask about that. Definitely having her take it at night. Thanks for the information. 

Tom.

Posted 2/24/2009 6:19 PM (GMT -6)

Hi Tanya,

I sure hope it works for her as well. It was this or Remicade. I was all set for Remicade, but over night, something just came over me and really started to worry. Fortunately the GI recommended we try Imuran first. She's on pretty much the same bloodwork schedule as you are. She'll top out at 75mgs in a few weeks. 

I hope you have success with it as well. Sounds like you're just finishing up Prednisone. I certainly wish you Good Luck too!

Tom.

Posted 2/24/2009 6:54 PM (GMT -6)
I'm so sorry to hear that Holly is having to deal with all this "CRAP" (pun intended) at such a young age. I was diagnosed at the age of 10 and it sometimes felt like torture having to go to school. Is Holly still attending school? If she is and you haven't already, I would suggest that you get her a permanent hall pass. Tell her teachers what is going on and they will most likely just let her get up and leave if she needs to use the restroom. That is what my mother did and it was a godsend.

As for Imuran, I have been on it for something like 10 years and I have never had any problems. It's a heck of a lot better than prednisone! Eeekkkk.

Good luck with everything. I wish nothing but the best for Holly and you.
Posted 2/24/2009 7:47 PM (GMT -6)

Hi annyb,

Thanks for taking the time to reply. I appreciate hearing from anyone that's had success with Imuran. It is definitely reassuring.

As far as school goes, yes, she's been attending. The hall pass idea is a good one, but Holly has never had any diarreah or urgency. No bathroom issues at all really. She has always had more constipation if anything. 

It must have been difficult for you being diagnosed in '80. I guess you've seen quite alot of changes in treatment options over the years. 

Tom.

Posted 2/24/2009 10:15 PM (GMT -6)

Tom and family,

I have been reading some of your posts, but have been too busy to chime in or don't feel I have anything to add.  I am glad that the surgery is delayed or put off for now.  When I was first dx, it seemed like it took so long to get my guts to a healthy, less painful state.  I thought I would be in pain forever, sick forever.  One day after another I began feeling a little better and with the healing of special areas I regained so much of my normal life, mood, energy , etc. 

Since she is roughly the same age as my Marie, I really feel for you and think of your Holly  often.  I pray that her abcess and fistula heal and of course that the Imuran works well with her body.

With Lent upon us, this is a great time to offer up any negative thoughts, worries, or fears up to God and let Jesus carry them for you for these next 40 days.  I am sure you do, but praise God every day for the health Holly does have and the strength your family certainly must have.  Thank God she can still go to school and function somewhat normally.  It is jsut a matter of time until the Imuran starts to do it's thing and she can forget she even has Crohn's.  So great that you are comfortable using this site to gain support, information, and insight. 

We will all be anxious to hear how this all progresses. 

Have Faith;)

Jennifer and Marie

(Marie goes in on Thursday for blood tests and see how the 6MP is working for her.  I try to just praise praise praise , but sometimes if she even gets a painful gas bubble I get this split second of panic, fearing a step back.  She is 90# now and feeling well enough to run a few miles here and there.  We will see what the doc has to say.  ONly 2 more weeks on prednisone !!) yeah

Posted 2/25/2009 8:32 AM (GMT -6)
Hi Tom,

I sincerely hope that the Imuran agrees with Holly and puts her crohn's in remission. When does she start it?

Keep smiling,
Julia
Posted 2/25/2009 8:58 PM (GMT -6)
Hi Jennifer,

Thank-You so much for your kind and supportive words. We certainly are on the same page, considering the similarities with our daughters. I can so relate to your comments about the anxiety you feel anytime Marie isn't feeling well, ("painful gas bubble"). I do the exact same thing.

It's so ironic that you bring up Lent, as last night I was thinking that for the next 40 days, I will be very positive about our adversity, and have greater Faith. I normally try to keep my faith/beliefs out of this forum, as some may not appreciate discussions about this. This disease has certainly caused me to have alot of new questions and challenges regarding Gods will, and what he allows to take place. Again, perhaps not the place to discuss this. 

I really hope that the Imuran works for Holly, and that the 6MP works for Marie. Please keep posting her progress. Have you noticed a growth spurt yet? God bless you and Marie, and Peace be with you both.

Tom.

Posted 2/25/2009 9:00 PM (GMT -6)

Hi Julia, 

Thank-You for the best wishes. She just started it, today is day 3. So far so good, keeping my fingers crossed. 

Tom.

Posted 2/25/2009 9:49 PM (GMT -6)

Tom,

I can understand what you mean about God's will.  What is in the plan????? And Why??? What is just chance-  if God really allows such a thing. 

I recently completed a bible study by Beth Moore, called "When Godly People Do Ungodly Things".

To sum it up, it was about forgiveness not only to those who negatively impacted our lives- though in the end brought new Growth (!!!) and also self forgiveness, though God never talks about forgiving one's self in the bible-      anywhere.  Beth feels it is because once God forgives us we should have no need to forgive ourselves.  Being human- we do.  WE search for answers.  We yearn for deeper knowledge, better understanding.  What I have learned having grown up in an alcoholic home is that even when I prayed each and every night that my home would be a happy one, God had plans and used that terrible "season" of my life to strengthen me so I can be a better mom and helper to the people I work with.   That time made me exactly who I am today and I respect me and do my very best every day to help others.

So....  My rambling has a point...  Maybe, just maybe this challenging season for you is a path for new growth, trust, solidifying your family unit.  When most 15 year olds are making dating mistakes your daughter is focusing on health and healing- spending more time at home than with friends- which we all know is a good thing.  We can't see the future, but with Faith in what the future can bring, we can find solice- a deep cleansing breath of new hope. 

I definitely talk freely and honestly with Marie, but I have to make sure I don't make my daughter feel like my state of mind is totally dependent on her "state of health".  That is far too much pressure for anyone, especially someone with a disease that has a mind of it's own.

God Bless you all during these 40 days to accomplish what you are working for-

Jennifer

Posted 2/25/2009 10:22 PM (GMT -6)

Jennifer,

I can understand and freely accept that God gives each of us challenges and adversity throughout the course of our lives. Many times in retrospect, we look back and see that what seemed like a disaster, actually led to something that was so right and good for us. As you indicated about you childhood.

Being a Christian isn't an easy path to follow. If all it took was to believe in God, and then everything in our lives went perfectly well, then everyone would be a Christian, and would never question God's very existence. 

What's the most difficult for some, (me included), is when God presents us with challenges that seem hopeless. That his will goes so against what we are striving for in life, that it becomes too confounding to understand. What I mean is, I pray everyday that my daughter will get better and be able to live the kind of life that she would want, and that I would like her to have. Yet, everyday I read the paper and read tragic stories of someones child dying or terminally ill with some awful disease. I'm sure those parents prayed and prayed for the same things that I've prayed so hard for. So it shows that no matter how hard one prays and hopes, if God's will is not what we're praying for, it may be all for not.  

I guess I'm getting abit long here. As I stated earlier, perhaps this forum is not the place for such discussions. I hope I haven't offended anyone. I will continue to have Faith, Hope and pray for a life full of hope, and strength, knowledge and wisdom to be able to persue that kind of life that I believe God wants for us. 

Tom.

Posted 2/25/2009 10:51 PM (GMT -6)
Hey, I understand where you're coming from Tom... Email me if you'd like to discuss it further...
Posted 2/26/2009 7:41 AM (GMT -6)

Tom,

I agree 100%!!!!!

Thanks for your reply. 

I hope Holly feels well today. 

I am trying to keep my anxiety in check today.  My daughter sees her GI adn we will have her blood checked to see how the 6MP is working with her liver.  She seems to be improving, but I have noticed that by 3 or 4 o'clock she is more pale and her eye lids are brownish. 

God Bless,

Jennifer

Posted 2/26/2009 8:13 PM (GMT -6)

Hi Celey,

I'm not sure what about my post you would be open to discussing. I would be more open to discussions about Faith/beliefs via email. Is there something in particular? 

Tom.

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