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Regular Member

Date Joined Oct 2006
Total Posts : 451
   Posted 4/18/2008 10:03 PM (GMT -6)   
Hi, ya'll. I have not been here for a few months. My daughter's Crohn's is as rampant as ever. She is supposed to be on two shots of Humira every two weeks but there have been some insurance problems. She missed several doses and we are working on an appeal. They did finally allow her to have one shot and she has another one due this week.

She had her second fistula surgery yesterday. The surgeon said that things really do not look good at all around the rectum/anus. He feels certain that she will have to have far more extensive surgery in the near future that will result in a colostomy. Even though I have been reading this forum since she first became ill in 2006, I yet feel at a loss when it comes to thinking about the implications of this sort of major surgery. The surgeon said the alternative would be TPN. I have no idea what we will do. Ultimately, it is my daughter's decision, of course, but I want it to be a very informed decision.

She has lost a lot of weight over the past couple of months -- still looks good but very thin -- size one jeans. Not even gaining weight on prednisone. But with all the infection from the abscesses and fistulae, has bouts of nausea, cramps. The surgeon had hoped that the Setons would calm things down but he does not think they will be adequate. For the first time, she has mentioned applying for disability. I think she is just very tired of the struggle. She loves to work and I cannot imagine how miserable she will be if she cannot work.

Anyway, if there are any good web sites for us to read or if anyone wants to offer some insight, all will be greatly appreciated. This forum has always been my best source of information.

My heartfelt thanks and best wishes.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 4/18/2008 11:51 PM (GMT -6)   
Hi Faizi.

I'm so sorry to hear that your daughter is still very unwell. She's had a long struggle, and I don't blame her for feeling tired. You must be sad and exhausted yourself.

I was a bit unsure about what sort of things you're wanting insight on. Is this a fairly accurate list?
1. applying for disability
2. living with multiple setons
3. living on TPN
4. living with a colostomy

If it's not accurate, please do add anything else you'd like advice on. I worry that, if we don't clarify exactly what you want to know, you'll get a lot of sympathy but no constructive advice... nice to have, but not necessarily helpful!

Best wishes to you both,

Co-Moderator Crohn's Forum.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 4/19/2008 8:28 AM (GMT -6)   
I have alot of rectal issues also....can she tolerate flagyl? If she can, I would ask if she could started on a high dose of that. Flagyl really helps me, and maybe it will her. I'm assuming remicade isn't an option??? If it is, I would start that also.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 4/19/2008 8:38 AM (GMT -6)   
I'm sorry I'm too new to Crohn's to be of much help . . . but darned it all! How does the insurance company get to pipe in on medical treatment??????? If her doctor says she needs a med, then darned-it she should have it.

I'm just ticked at the way the insurance companies push us around . . . I'm holding my breath waiting to see if they will pay for a $500 blood test that will actually save them money in the long run and then to see your post just enrages me.

Sorry . . . rant over. Maybe you could contact your State's Attorney General (number in the blue pages of the local phone book) and ask them if the insurance company can deny that treatment. We also have a local gal who intercedes for people as a mediary between health insurance company and patient. Her company name is Medi-Form but I don't know if there are other companies like hers in other states. There is a fee for her service but the possibility of $$ saved thru insurance far outweighs the cost.

Blessings to you and your daughter as your cross this bridge!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Oct 2006
Total Posts : 451
   Posted 4/19/2008 10:08 PM (GMT -6)   
Thank you all for the replies.

Ivy, what I was really looking for was living with a colostomy. The TPN idea might not be a bad one. We still have some time to think about it. I will go with her for her follow up visit with the surgeon. Since the last fistula surgery, I have only spoken to him on the phone when he called the waiting room to tell me how the surgery went. That is when he told me about the inauspicious findings.

Rox did seem to feel a little better today. She went to work. Lots of arthritic type pain, though. Yes, I do think she is tired from the struggle with the Crohn's crud. I am doing all right, thanks. I am so accustomed to living with people who have chronic illnesses but, for some reason, I never expected one of my kids to become ill. They were both always so healthy.

She has no problem living with the Setons. Better than feeling sick from the infection.

Chroniemom, she cannot tolerate Flagyl. She was prescribed that recently and she gave it a good try. She took it in the past and said she could not do it again but she did try it one more time. Unfortunately, it made her pass out several times, in addition to the nausea and general malaise. She had to stop.

Rosie -- yes, I am very used to fighting insurance companies. I am a nurse in a doctors' office so I have been fighting them for patients for a long time. With the exception of the current Humira problem, my insurance company has been as good as I could ever expect. I definitely don't know the solution to health care woes in the US but I think most people agree that there need to be changes.

I can somewhat understand the need to manage medical costs but I know that physicians do not prescribe Humira or Remicade lightly. My daughter, like many other people, failed many medications before she was prescribed Remicade. In fact, she was down to one hundred pounds, on TPN, and still having bloody, watery diarrhea on sixty milligrams of IV Solumedrol before she was finally given Remicade. I mean, people have to jump through some pretty painful hoops to get to the point that they have to have Remicade or Humira.

Sorry for rambling on but insurance company frustrations naturally lead to that.

Thank you all.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 4/20/2008 1:15 AM (GMT -6)   
Faizi, have you thought of popping over to the ostomies forum and talking to the people there? I've been on the verge of an ostomy for years now and have always found the ostomy folks very supportive, informative and helpful.

You said that the alternative to a colostomy was TPN. Would that be permanent TPN, like what Randy's doing, or would it be another temporary treatment?

I'm so sorry Rox is still so ill and is facing such hard, momentous decisions.

Co-Moderator Crohn's Forum.

Regular Member

Date Joined Oct 2006
Total Posts : 451
   Posted 4/20/2008 10:10 PM (GMT -6)   
Thanks, Ivv. That is what I will do.

I think he means that the TPN would be temporary. We will see him in about a week so we will have plenty of questions for him.

Thanks again for the informative support of everyone here.
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