Amitiza w/o doing colonoscopy first?

[Naturelover]

My daughter, 14 yr., has a mega colon. This was discovered recentlly when her gyn doc did exploratory surgery. My daughter was taking 3 1/2 capfuls of Miralax, four Womens Ducolax Laxitive as well as four Senokot just to have a bowel movement. Even then, she still felt like she had more stool in her. Her doc put her on Amitiza without having ever done a colonoscopy. Does this seem like a wise idea? She is still having trouble doing a BM and is taking more OTC meds without the docs knowledge. I will be calling the doc today and letting her know. I don't know why they haven't done a colonoscopy since discovering she has a megacolon. Her GYN doc is also mystified about this. She said that my daughter really needs to have a colonoscopy to assist in finding out what is going on. Her pediatrician concurs.

I looked up Amitiza on drugs.com and saw that it should not be used under certain circumstances. Without a colonoscopy, how can we know if it is safe for my daughter to use this drug?

How big can the colon get without rupturing or causing serious complicaitons? Her gyn doc said that my daughters colon is more than twice the size it's supposed to be.

Any help or advice would be greatly appreciated. Thank you.

Blessings,
Naturelover

Could the megacolon be causing the coxxyiodiana? (Coxxy pain)

 

[StarGirrrrl]

Hi Naturelover, we are not geared up to deal with kids here so I am moving you over to the wonderful Parents with kids with IBD section, which sadly also deals with undiagnosed children.

 

[DustyKat]

Hi Naturelover,

What sort of doctor has your daughter seen?

I do think before further laxatives are added she should have a definitive testing done. Has anything been done other than what the gynae saw during surgery, scans or ultrasounds?
You need to know why she has mega colon, it's not enough to know she has a problem without being given some sort of explanation.

It is difficult to say what size is dangerous but being twice the size sounds to me like it has the potential to be heading into dangerous territory.

Do you know what area of the colon is affected?
If it is the lower end of the descending colon/rectal region then I can well see that faecal loading here could cause coccyx pain.

Good luck hun and keep us posted!

Dusty. xxx

 

[Farmwife]

Welcome aboard!
Sorry to hear about your daughter. My 3 1/2 girl is still undiagnosed. She had c. diff awhile ago and mega colon was a REAL danger with c. diff. Has she had her stool tested for that? I guess I have to google and see what else can cause it. I pray thing will get better soon. Just remember your not alone. Their's quite a few of us going through this.

 

[Naturelover]

StarGirrrrl, Thanks for moving this. I don't know my way around the board yet much less what to put where.

DustyKat, Thanks for responding. I really appreciate it. Nothing has been done since the exploratory surgery other than changing her meds to Amitiza. This was done w/o the GI doc seeing her. I phoned the PA and left the msg on the answering machine and have yet to hear back. Her appointment with the GI doc is not until September. Way too long. She was supposed to be seen back in three weeks not six or seven. I was told there were no other appts by the person who sets up the appts. I called the PA and left the msg on her answering machine. I think I'm going to have to get the phone number to reach the docs answering service and stop dealing with the PA irregardless of what their protocal is. We are getting no where fast. I am very nerveous knowing how big her colon is right now. Seems dangerous to me.

Her pediatrician will be available on Monday and has suggested we do a colonoscopy at a different hospital than where her GI doc works. Her GI doc is the Chief of the Pediatric GI Dept. My son had her for many years. He had her when she was just a resident at the hospital. I have known her for 19 years now. Never the less, I'm not afraid to switch docs if I need to. My daughter deserves someone who will get to the bottom of things in a timely manner.

I will be calling the GYN doc on Monday morn to find out what part of the colon is affected. If I remember correctly, and I believe I do, when my daughter had an x-ray in the ER back in January of this year, one could clearly see she was full of stool at that time. I am going to go to the hospital and request a copy of those x-rays as well as copies of all test and records that have been done for all of her visits to the ER and hospital.

Next week I will hopefully get a bit of reprieve from everything. My family is going to one of the Joni and Friends camps. At least one person in the family has to have a disability. I think we well exceed that number. LOL!:ywow:

My daughter's "missionary buddy", (MB), will be a nurse. Thank goodness. Some kids get another adult or teenager as their MB. The camp folks are concerned about my daughter's condition, that's why they assigned a nurse to her. The MB will be with her the majority of the time. The MB will not be with my daughter when my daughter is with our family. My daughter has been having an allergic reaction to something this past week. She has a rash on both arms that also started spreading to her abdomen. Benadryl is taking care of it for now and the doc prescribed a cream to help calm the itching.

I haven't been swimming for years. I've been working with my home nurse to get extra port supplies and needles. The camp RN has been working with the powers that be and has been approved to access my port at night. Each morning at camp, I will deaccess my port (just learned how to do that last week.:ybiggrin. This frees me up to go swimming. At nightime, the RN will reaccess the port and apply the dressing so I can do my nightly hydration therapy. I can't wait! I'm going to make the most of next week. We will only be there from Monday, early evening, thru Friday afternoon, but I can't wait. :soledance:

My daughter is also looking forward to swimming and doing whatever she is capable of doing.:rosette1:

Farmwife, Sorry to hear about your little girl. Hope she gets to doing better and the docs sort things out for her. I can sympathize with what it is like to have a little one with significant medical issues. My middle one had infant botulism at four months of age. He continued to have significant health issues throughout childhood. The docs don't have a name for what he has; just a long list of symptoms. He is nineteen now and doing better, however, he continues to have health issues but is better able to manage them on his own now.

Check out my other posts on the site and you will learn more about him as well as me and the rest of my family.

By the way, your daughter is adorable. Thanks for sharing. How on earth did she get c. diff? That's a dangerous infection. My husbands Uncle died from it this past year. He had been battling cancer and survived the cancer but then got the c.diff and past away. He was in a nursing home for rehabilitation when he got c.diff.

Am I correct in thinking that c. diff causes diarrea and not constipation?

I'm not real good at researching on the internet yet. Is there someone on this forum that is? If so, could you find out if a colon that is more than twice the normal size is considered a distended colon or a mega colon? Also, at what point with an enlarged colon does one have to be concerened about the colon rupturing? Are there any other complications to watch for with an enlarged colon? Thanks for all your help.

Blessings,
Naturelover

 

[Naturelover]

Farmwife, If forgot to answer one of your questions. No, my daughter has not had any test done on her stools.

 

[Naturelover]

Family picture. Terrible one of me. I got my braces off last week and cut my hair at 11:30 PM one night last week. I even have new glasses with polorized lenses. (Bright lights hurt my eyes. Just another complication of RSD) Back in the earlier part of the year when this photo was taken, I had lost a bit of weight due to illness. I'm back up to my normal weight now. Daughter is wearing a black shirt. Middle son is wearing the green jacket. Older son is in the tan jacket.

Don't mean to be hogging the forum tonight. Just thought I'd share.:hug:

Blessings and prayers for a pain free and symptom free day. Naturelover :ghug:

P.S. Does Miralax or Senokot cause gas?

 

[Patricia56]

Hi Naturelover,

Here's a link to a very good discussion of constipation-related megacolon, also known as acquired megacolon. It includes a description of a treatment plan that is almost exactly the treatment plan that was rxd for my son when he was severely constipated.

http://www.virginia.edu/uvaprint/HSC/pdf/12012.pdf

Most of the time, constipation is just constipation. I didn't go read about your family so I have no idea if your daughter has an underlying health problem that is contributing to this issue or if there is reason to suspect that she has IBD. If that is the case then obviously more careful work up is probably called for.

My non-medical professional opinion is that, if her colon has not burst by now you can probably relax about that one.

My guess is that the GI's approach (assuming there's no reason to suspect serious underlying disease issues) will be to treat the symptoms and see if they improve. If they do then it was constipation. If they don't then more invasive tests of colonic transit time, rectal function and anal musculature may be required.

Having traveled that road with my CDer, I will tell you that it is traumatic and ugly. I do not endorse that route unless there is a really good reason to go there.

In the meantime, the med you mentioned is a sodium channel activator. That means it encourages cells that would normally keep water in to let it out. This produces more water in the intestines which contributes to softening of the stool It is supposed to produce the same result that you get when you use OTC products like the ones you have described.

You are right to be concerned and it's not good that she appears to have become dependent on those OTC meds to have BM's.

It can take a year or longer for her colon to return to normal size. That will only happen after she starts having normal stools (soft, formed but not hard, at least once a day).

You always have the right to decline medication for your child. If you want to wait for an in person consultation before you use it then that's fine. Makes perfect sense to me.

On the other hand, you can go ahead and encourage your daughter to take a proactive approach to the problem to see if practical measures at home will help. Keep careful records and take them to the GI and it will help you all to figure out what's going on.

She should sit on the toilet after every meal. Our GI recommended starting within 20 minutes of the meal and sitting for at least 10 minutes, even if there is no urge to go. That is one of the things she has lost - the normal sensation that triggers elimination. So she needs to just sit and see what happens. No straining, just sitting.

She should make sure she is drinking enough water and she needs lots if she is going to keep taking all that OTC stuff. Dehydration may be a big part of the problem.

Certain foods will help battle constipation. Drinking apple juice, prune juice or apricot nectar; eating plums, prunes, apricots, pears wit the skin on, figs are the easiest things to try.

Good luck with all of this.

 

[Naturelover]

Her C-Reactive Protien blood work shows inflammation.

I am familiar with the test that measures intestinal and colonic contractions. My middle son had that test when he was little. It was discovered that he had severe delayed gastric emptiing that basically went all the way through the entire gut. Yes, the colon included. Even when given erythomycine via IV, he had sub-optimal contrations throughout his GI tract.

His body did not absorb nutrients properly. Long story short, he was j-tube fed peptamine jr. for about a year, then switched to g-tube feeds of pediasure and finally to additional pediasure po with the g-tube being used to occasionally suppliment feeding as well as to regularly vent the stomach from excessive gas. The docs believe he has some form of dysautonomia. He has many other issues besides his gut.

The doc was going to put my daughter in the constipation clinic until I started asking questions regarding inflammation and constipation. She asked which blood test it was and for the numbers. After I told her the info, she said, "This changes things." My daughter was not put in the constipation clinic. Instead, my daughter was to take the meds for constipation and see the doc in three weeks for a re-test of her c-reactive protien levels.

 

[Patricia56]

Sounds like you're on the right track then since your daughter will apparently be seen in the regular GI clinic instead of the constipation clinic.

Hope they find some answers quickly. I'm surprised that it's taken so long to get them to take it more seriously given how much OTC meds she was taking.

Isn't it great to have somewhere to go where people hope to discover that their kid is "just" constipated and you can actually talk about it.

Best wishes

 

[Naturelover]

DustyKat,

Cats outa the bag. Daughters name is Melissa, middle son is Daniel and the oldest son is Jon.

I did a lot of research on coxxy pain for adults. I couldn't really find anything on coxxy pain for children/teens. That's what lead me to ask her orthopedic specialist about seeing GI. He thought it was a good idea to see GI. I was beginning to have suspisions about constipation being a big cause of the inflammation and coxxy pain. Melissa previously developed more sensitive or pain spots on her spine.

Could the new spine pain be caused from the enlarged and full colon?

I have a host of health issues. I have always had constipation and bloating issues just to name a few. Mine have been acting up big time because I ate some food that apparently set of GI symptoms for people w/Celiac disease. I had read that if you are not eating these foods when you are are tested for Celiac disease, the test may come back as negative for it when you actually have the disease. Unfortunately, I was only on the foods for a day or so. May not be enough to affect the blood test results. I was dx w/IBS as a teenager after I graduated HS. It has taken years and years for me to be sensitive to what my body is doing. I was just starting a journey to get an endoscopy and stool testing when I encountered other health obsticals. It's been rough over the last few months for both Melissa and I. Hubby is one step away from frozen shoulder on one shoulder and now the good shoulder is acting up so badly that he can only raise his arm about half way. He wouldn't go to the doc when I told him to and now he has muscle atrophy in the right arm. Geez, when it rains, it pours around here. I'm staying positive that next year will be a better year health wise for my family.

I have hated to watch my daughter suffer so much this year. There have been times when my health was so bad, I couldn't take care of Melissa and instead, Melissa felt she needed to take care of me.

I would like to get to the bottome of things with Melissa sooner rather than later. We have dealt with so much health wise, in the past, with Daniel and Jon. I was excited that I wouldn't have to deal with John's Hopkins any more. Immagine my disssapointment. Due to my health issue, in order to make a trip to Hopkins, I have to lay down in the middle seats in the van with an electric blanket covering my legs and feet and more blankets piled on top of the electric blanket. I also have to rest and close my eyes. It takes so much out of me. My husband now has to take off work to take Melissa and I to Hopkins. He is running out of leave. I used to be able to drive to Hopkins with no problem. I miss those days.

 

[Naturelover]

Thought I'd slip over and give an update.

Melissa is taking 4 Senokot & 1 Amitiza in morn; 3 Dulcolax Laxatives and 1 Amitiza in the evening and is having only either watery bm, applesauce consistancy bm or watery w/seeds like stuff bm. Nothing solid. She said she still feels bloated and that not everything is coming out.

She saw her GYN doc for her post up visit on Tuesday. Doc was shocked at the level of meds and still Melissa is experiencing constipation. She ordered x-rays. X-rays showed very large distended colon up by rib cage. Two solid mass (Stool I presume) in colon. One is larger than the other. The larger of the two solid masses is right in front of the coccyx.

Melissa is still in pain. Now what?

 

[Sascot]

Hi, just wanted to pop on - was catching up on your thread which started while I was away. Sounds very frustrating that she is still constipated with what sounds like a whole lotta meds! I would do what us stressed mom's do best - nag the doctors. September sounds too far away to see the GI and it sounds like she really needs the colonoscopy. Have you tried phoning the GI secretary - if you can get her to listen maybe she will try to push the appointment forward or at least put your daughter on a cancellation list in case some cancels soon. Maybe she could get the GI to phone you so you could ask for some advice in the mean time. Good luck, hope something gets done soon!

 

[Tesscorm]

I wish I had some advice for you I'm so sorry she is still in pain!

As Sascot suggested, I would try to move up the apptmt or, at least, put your name on a cancellation list.

I hope you are able to get an earlier appointment! :ghug:

 

[Naturelover]

Thank you everyone. I appreciate your concern.

You are not going to believe this. Her pediatrician got a copy of the x-ray technicians report. The report basically says every things WNL. Seriously!? I told her I have the x-rays and Melissa's gyn doc has looked at them and is very concerned. The ped said she only has the report for one x-ray. I informed her two were taken that day and I have a copy of both. She told me to take them with me when we see GI. The x-ray techs are the experts according to her pediatrician. It doesn't take a genius to match up the problem. :ybatty:

Melissa's pediatrician said she has several teenagers on the same Rx and OTC regimen as Melissa. She said it's more common than people think and that she would have to be on this regimen for life. Seriously!?!?

I talked with the GI NP and she suggested we may do another enema or clean out like she did before surgery. I told her again what Rx and OTC meds Melissa was on and she once again changed her tune. She wants an ESR and Celiac blood test added to the c-reaction protein blood test. She said when we come in we can ask the GI doc about a motility study.

I did manage to get the GI Doc's voice mail today and left a message. I hope she calls me back tomorrow.

In the meantime, I'm recovering from a biopsy procedure and my asthma has been acting up. I can hardly function, I'm so tired.

Blessings,
Glo

This all gets so frustrating!

Glori

 

[Naturelover]

Melissa sees the GI doc this Tuesday! Ya hooo! Finally. I thought it would never get here. I have kept a closer eye on Melissa and noticed that she is drinking lots of water and eating lots of salads with her lunch and dinner. She also eats prunes and other fruits and veggies. She's making an effort on her part, but still no changes with pain or bm.

What would be a good list of questions to ask the doc?

I have been dealing with so much with my own health since we got back from our family camp. Every test I have had has shown something that needs tending to or further work up. I will be having surgery Oct. 1st. My head is spinning and I can't think straight.:confused2:

:ghug:

 

[Sascot]

It certainly does seem like you are dealing with an awful lot. There's nothing worse than trying to deal with your own health issues as well as the worry about your daughter. Sorry I don't have any questions to ask as we are dealing with different issues, just wanted to wish you luck with the GI appt. I hope you get some proper help for her. And best of luck with all your health problems, hope they get resolved quickly so you can feel better!

 

[crohnsinct]

Sorry hun I am not so much up on the questions to ask as there was no build up in my daughter's disease...just got diarhrea and two weeks later in hospital with dx.

I am so sorry you are struggling with your own health issues and trying to sort out so much for your family. You are an incredibly strong woman and obviously a great mom.

 

[Patricia56]

It sure does sound like you have a lot on your plate. Sorry to hear that.

Could your daughter be having trouble partly because she's worried about you? I know that can really affect the way my tummy handles things.

Hope all goes well with your surgery and things get moving (so to speak) with your daughter.

 

[Naturelover]

Don't believe dd is having trouble because she is worried about me. She has had problems since she was 8 or 9 years old. The docs believe that things got worse this past Jan. because she had another growth spurt. No one knew about the adhesion of the colon being connected to the pelvic wall. There just wasn't any more growth room left in the adhesion. I am suspicious that there is nerve damage to the colon because of the adhesion. Her pediatrician and GYN are also thinking along those lines. We'll see if GI does as well tomorrow. I think she needs a motility study and colonoscopy done. Motility issues seem to run on my side of the family. It would be nice to get to the bottom of things soon. But then again, you know how some doc's like to drag things out.

 

[Naturelover]

Update:

Melissa went to Hopkins today to see GI. The doc wants her to have a motility study done. It may be possible that because the one area of colon was attached to the pelvic wall for so long that damage has occurred to that portion of the colon so that it may not be able to contract properly. The doc has to contact the adult GI doc who does the studies in order to set it up as he does not take pediatric patients any other way. She will also be informing him about my situation as well as briefing him on Daniel's GI history. Hopkins is starting a new clinic solely devoted to GI Motility issues. Our family would be a good one to research, gather data from and follow. There are several different types of motility studies that can be done. Our goal now is to work towards reducing the meds necessary to keep Melissa's colon moving things along. I took the x-rays with me today to show the doc. She said she was glad I did. She would not have called the amount of hard stool in the colon that was directly in front of the coccyx normal. So, that makes three doctors and two parents who disagreed with the radiologist who wrote that the x-ray was normal. If it turns out that there is only a section of the colon not functioning correctly, there are things they can do. My guess is surgically removing that part of the colon? It was really neat having a doc tell me, "I agree with you. I think this is more of a motility issue." I am so grateful that Melissa's docs care so much about her as to order test for something that may not be part of their field. Melissa's GYN was the one who ordered this last set of x-rays. She was floored at the amount of meds required to get Melissa's colon functioning. Her pediatrician listed to what I had to say and ordered blood work. The blood work was what told me that this was more of a motility issue. The inflammation markers had gone down since the surgery.

What was nice about our visit today with GI was that she answered any question I had, whether it was about Melissa's issues or my own GI issues. Due to my vast medical knowledge, I get into some very detailed non-laymen’s terminology conversations. Mike thinks because the doc knows I understand what she is talking about and doesn't have to spend so much time trying to help me understand what is going on that it frees her up to answer other questions that may not be patient related. Hmm, I never thought about it that way. We have known this doc since she was a resident at Johns Hopkins. She is now the Chief of Pediatric GI. She is more than just a doc, she is a friend. How awesome is that!?

Now onto my GI doc visit this evening. The Endoscopy biopsy results showed inflammation in the esophagus and no signs of bacterial infection that could be causing the gastritis. I will have an upper GI motility study done Friday; A colonoscopy next week and a Colon Sitz Mark Study (type of upper and lower motility study) the following week. I’m grateful I have a GI doc who is willing to do what is needed to get to the bottom of things. Hopefully I can get a diagnosis so that the proper treatment can be implemented and I won’t have to have the GI pain any more.

 

[Sascot]

Wow, that sounds like a very thorough visit! It's great when doctors actually listen to you. Good luck with all the tests that the two of you will be going through over the next few weeks!

 

[DustyKat]

Thanks for the update hun!

It is so good to hear that things are finally happening! YAY! Good on you for being such a fab advocate for your daughter. :thumleft:

Are they saying the inflammation of the oesophagus is just that or have they thrown Eosinophilic Oesophagitis into the ring?

How did the study go?

Good luck with the tests over the next 2 weeks! :goodluck:

Dusty. xxx

 

[Naturelover]

Are they saying the inflammation of the oesophagus is just that or have they thrown Eosinophilic Oesophagitis into the ring?
Dusty. xxx

What is Eosinophilic Oesophagitis?

During the Upper GI motility study, the liquid frequently came up into my esophagus. It burned! I hope they got that on film. I am now awaiting the results. I am suspicious that my stomach was behaving itself that day and emptied okay. I have been in a lot of stomach and esophagus pain and not sleeping. Due to the pain, I have been having more nutrient drinks followed by either pretzel sticks, Cheese Its or toast and less food. That does seem to help with my stomach motility. The solids listed above help with the stomach pain.

Spent a bit of today in the loo. (At least I close the door and don't leave my knobby knees hanging out. Snicker, snicker, wink, wink.) It was time to take the laxative since I don't seem to be able to have bm's any other way right now. The doc wants me taking it every three days but I went longer due to the motility study. You're not supposed to take laxatives before or the day of the test. I took the laxative yesterday and it didn't start working until today.

I'm looking forward to getting some definitive answers on Melissa so we can get her settled and have one less issue to deal with.

I will soon have to address the hyper extension of my legs as well as the muscle atrophy. I won't tackle that until I am doing better in my recovery from surgery. Hubby took photos today and I sent them to the PT, OT, my PCP as well as my Case Manager. So at least they can start putting together a plan. I think I need a brace that will keep the legs from going into hyper extension but still allows me to bend and straighten them for walking purposes. Leg braces might help give me more stability and lesson my near falls,imbalance issues etc.

Kids still staying healthy at college?

 

[DustyKat]

Here is a good article about it...

http://www.medicinenet.com/eosinophilic_esophagitis/article.htm

...but essentially it is inflammation of the oesophagus and they think it may primarily be allergy based.

Don't be dissing on my knees! :lol:

The kids are both doing well thanks hun.

Dusty. xxx