I think something may be really wrong...

• By chewy1
• Posted June 26, 2008 at 8:48 pm

I'm so sorry to hear that you are having such a terrible time. It sounds like you have been through it all and to be such a young age must make it even more difficult.
I can't provide you any answers, but I wish I could. I suffer from the constipation issue too. I was finally diagnosed with a pelvic floor outlet dysfunction. I was told that was one of the reasons I had so much bloating and pain. I went through a 2 week retraining program and although I still have to take laxatives, I'm able to get results without having to triple a normal dose.
I hope that you can get the pacemaker. Hopefully, it will at least provide some relief for you.
I would be curious to find out why you are having the trouble with feeling like you are suffocating when you lie down. I have felt like that for about 3 weeks and last night was really bad...so I'm already dreading tonight because it might happen again. Of course, them more we think about it ,the worse it will be...I think I worked myself into a panic mode almost last night because I felt like my throat was closing up and that my heart was beating way too fast.
I really wish I had some answers for you. I will keep you in my thoughts and I hope that someone else might provide more help.
Judy

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• By princessfaith82
• Posted June 26, 2008 at 10:58 pm

Hi Judy,

I appreciate your response. I have heard some stuff about pelvic floor issues and I know that is just terrible. I am so glad that the retraining program worked for you. I just hate the mystery that is dysmotility. I am beginning to wonder is the "suffocating" feeling that we both have been having might be from backed up stool? I am definitely looking forward to my dr. appt and will absolutely let you know what the doc says in regards to that. Thank you so much for your thoughts, I will continue to keep you in mine as well. =P Sarah

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• By twin
• Posted June 27, 2008 at 10:21 am

Hi Sarah,
I know how yyou feel. I'm sorry you are having such a bad time. I also struggle with the constipation thing. i take it's polyethylene glycol the prescription form of miralax, it's much less expensive. I also have to take amitiza 3x a day and it seems to help me. If I go through a really bad spell, I have to mix it up with other laxatives, supportories, liquid magnesium citrate oral solution. Some times changing it up helps my weird system move. I don't know if it will help, but you never know.
I also have the pacer, I have had it now for a year, It has been a process, but it does help sometimes with my nausea, I don't think it has any effect on my bowels. Good luck with your new doctor. Take care, Karry

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• By princessfaith82
• Posted June 27, 2008 at 12:48 pm

Hey Karry,

I appreciate your input. Maybe the perscription would be a better solution--the over the counter Miralax is ridiculous in price! I too have tried Amitiza, unfortunately I had a very severe allergic reaction to it. I lately have been taking Phillips caplets in combo with the Miralax as they have Magnesium in them too.
I heard that they can place a pacemaker for your intestinal tract and in your stomach--which one do you have? I think I may need both!
Today, I feel much worse than I did yesterday. I am extremely nauseated and have a wierd almost indigestion/pain sensation in my gut. It feels almost like it did when my GI tract spontaneously shut down last year. I am debating on whether to go to the ER in Richmond tomorrow (no transportation today). It is just such a long drive--3 to 4 hours. Please keep your fingers crossed that I can continue to hold things together I will keep you in my thoughts as well. Thanks, Sarah

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• By sprite
• Posted June 27, 2008 at 3:02 pm

Hi Princess,

If you have insurance I think the RX - Miralax might be good.

What comes to my mind is to change your constipation medicines, by rotating them... maybe every month. I think you are done with Miralax because it is not working any more. I have had to do the same with out meds. This is a medical problem that happens. (Hubby is an MD, and I will ask him what he thinks).

I have also experienced allergies to meds I had used for years.

I like the erythromycin ethylsuccinate oral suspension, USP 200 mgs. It's an antibiotic which helps to clear spoiling of the stomach and contraction of the stomach. But the domperidone has also worked for me. Reglan has too may neurological side effects and I only took it for two days... coo-coo!

Finding MD's is difficult and I am sorry you are in that hole. I've been there. ER's are not a good place for me to go too. I have uncontrolled blood-pressure and the ER called my doctor and he said, "I don't know what to do with her." Another time, I started convulsing because they did not give me a stress dose of steroids and Bryce went running down the hall to get the meds himself. Since then, I am prone to seizures.

How far is the ride to Cleveland? I drive four hours to my motility doctor. But I'm not going back unless I worsen. We won't use the gastric guys here in Redding because one of them almost killed me. I was having the routine colonoscopy (I'm 51) and he did not give me the stress dose of steroids I needed. My blood pressure dropped to 30/10. My heart rate was 160 and they called code on me. I didn't need it.

I would recommend an increase in magnesium. And then getting other constipation meds to rotate. I think your body is no longer responding to the Miralax. Also note, that the over-dosing will not work. Once you take the recommended amount, increasing will only work for so long. And I think that is where you're at.

I'll have Bryce read your post when he gets home. If it's late, he might respond tomorrow.

I'm so sorry you are in this position. It really sucks. And you are so young. God speed to you to work this out.

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• By princessfaith82
• Posted June 27, 2008 at 5:06 pm

Hi there Sprite,

I appreciate your input. I am thinking that you are right--the Miralax isn't working for me the same anymore. The rpoblem is That I am allergic to Erythramiacin and to Amitiza, and I have already tried the big gun perscriptions on the market. I have added Magnesium in the form of Phillips caplets to my regimen, however, I am scared to add any other medication that is over the counter, because I was told that taking stimulants could really damage what is left of my GI tract. Unfortunately, Fleet enima's and suppositories don't work for me either. I feel like I am at a draw. I am also scared to take too much medicine. Last year after my colectomy, CVS gave me the wrong Oxycontin perscription (3.5 times the dose I should have gotten) and I almost died. Since then I hesitate to take a tylenol for even a headache!
It sounds like you have been through the ringer with doctor's too. I don't blame you for making the four hour drive to get good care. I do the same thing. No doctors in Northern, VA want to deal with me. Once when I went to the ER the doctor couldn't even figure out how to place an NG tube! The ambulanced me all the way to Richmond! I hope you sued the heck out of the doctor that caused your seizure problems. It seems like nobody wants to have accountability for their actions anymore.
I actually have not been to Cleveland yet. I am waiting for my Dr. to start there in August. I am supposed to see his replacement here in Richmond on July 7. I just hope that he is as good as Dr. Kirby was.
I appreciate you mentioning this to your husband. I am scared to overdose on Miralax, but my family dr. said to keep taking it until I go. Like you said though, it has gotten to the point that I take such large quantities to even go a bit. Something has to fix this, right? I appreciate all of your input and advice. I just hope a day comes where I can sit down and eat half a pizza again by myself! Isn't it funny how such little things can mean so much once you lose the opportunity to have them? Anyway, I truly hope you are doing well. How long have you had GI issues? Has anything been a magic bullet for you? Maybe I am silly and immature, but I still have hope that there is a magic cure out there to fix this.
Thanks again!
Sarah

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• By Whisperingdays
• Posted June 27, 2008 at 10:29 pm

Hi Sarah,

I am so sorry that you are going through a rough time right now. I think for all of us having a bowel movement is almost a celebration when we are able to have one, so I certainly know what you are going through.

I have Severe Idiopathic GP and just got out of the hospital after a two weeks stay. I two am on TPN now and waiting to hear if I qualify for a gastric pacemaker.

Do you know how to massage your stomach to try and help stimulate your bowels? I am a massage therapist and that is something I do to myself on a daily basis in hopes to be able to work it enough so I can go. But I am lucky if I go once every 5 days or a week.

Miralax I was always under the impression that it is a softner rather than a laxative? I take it as well and I know for me it only helps for when I do go that my stools are at least soft enough for me to go without being in extreme pain.

I don't know if you can do colonics, but if you can I am sure there is one in your area that could do colonics on you to clean you out so you are not so miserbable til your doctor gets back. I know what you mean about feeling like you are going to suffocate when you lay down that happens to me as well. I have always thought it was a combination of being bloated and the fact that the GP has effected my esphogus I feel like I can't breathe either then I get up and use my inhaler even though I am not having a asthma attack just too see if I get any relief.

Also a Tens unit to try and stimulate your stomach could also help. I am just trying to help you think of things you could try til he gets back. I do feel that you are taking way to much of the miralax and that you could be blocked and that is why you are not going. That is why if you know you could have colonics done that I would suggest for sure trying that.

You are so young to have gone through so much. You still have a lifetime ahead of you. I wish you the best and hope that we will all have some miracle happen for us sometime very soon.

Whispper

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• By sprite
• Posted June 28, 2008 at 2:49 pm

Princess,

Bryce has his annoying Dr.'s Hat on

What are your other diagnoses as well, anything besides the GI probems; are you on any other meds?

How do you in-take your food; feeding tube or by mouth?

Do you now have a colostomy bag?

And what is your diet other than TPN and pizza:):):)?

Get back to us when you can.

My email address is:

cherryltaylorhauser@yahoo.com

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• By DonnaBecton
• Posted July 1, 2008 at 1:56 am

Princess,

I can't even tell you how much I relate to your problem. I'm 25 and I have a gastric pacer (Dr. Willie Melvin at Vanderbuilt Universtity, in Nashville, Tn.) I've only had it a year and I have had some relief with the nausea. I haven't had any relief with the constipation. I take (minimum) 15 Correctol (or the generic brand) every 1-2 days. I know MY Dr.'s tell me I only need to have a bowel movement every 2-3, 3-4, days, but the amount of discomfort and pain I feel is unbearable. I had no luck with the miralax myself, but I hope you do. Please let me know if you have any questions about the pacer. I will keep you in all my thoughts and prayers. I only wish for the life of a normal 25 year old, and I'm sure you feel the same.

Donna Becton
missdsb@gmail.com

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• By princessfaith82
• Posted July 2, 2008 at 1:16 pm

Hey Donna!

I am so glad to hear from somebody who is my age going through the same thing. It seems pretty rare for this to happen in your 20's. I am sorry that you are suffering like this too. I'd like to know anthing you can tell me about the pacemaker. I am not sure I would need the one for the stomach, but I heard that they now do one for the inestinal tract and that is what I'd be very interested in. I don't have a large intestines anymore, so I figure maybe they could do it for my small? It seems that since this is such new surgery that it can be difficult to get straight answers and a lot of doctors and nurses have no clue what I am talking about! I am so glad that the nausea is better for you. I know how uncomfortable it is not going. Miralax isn't the best, but I was told things like correctol can permanently damage your inestinal tract and cause malabsorbtion problems so I try to stay away from stimulants. I chug Miralax though. I was concerned because I am using like 2 and a half months worth of Miralax in 4 days to get results that I need to be comfortable--even then I do not empty completely. I guess they are cound to come up with a magic cure at some point, right?

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• By Pebbles5410
• Posted August 6, 2008 at 11:53 pm

I just returned from Cleveland Clinic and Dr. Gurland at the clinic mentioned the implanted Neuromoderator, also known as the sacral nerve stimulator which is used to help with dysmotility. Unfortunately, it has not been approved by the FDA and the studies are closed for new participants and approval is not expected until 2011. I am currently talking with a doctor in London, England because it is being used in Europe. I want to try everything before I have the colectomy because I have had so many other surgeries.

I am sorry to hear about all of your problems and hope that you find a new doc that is good. I did not see your former doc at Cleveland but I was impressed with Dr. Gurland in Cleveland.

Carol

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• By Pebbles5410
• Posted August 6, 2008 at 11:55 pm

Oops I just reread my reply---that should have been Neuromodulator, not Neuromoderator. It's late and my brain is pretty dead---Sorry

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• By princessfaith82
• Posted August 7, 2008 at 5:44 am

Cool! Thanks for the info Pebbles! I will have to talk to my doc about that and see if there are any other options left for me too.

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• By NancyL
• Posted August 7, 2008 at 10:21 am

Hi Princess,
I am so sorry to hear that you are having to go through so much at such a young age. I live on a liquid diet and heavy doses of Miralax. I found it really helped to ad flax seed oil capsules to the mix. i also take dulcolax and I understand you not wanting to take stimulants. I too miss the heck out of pizza. But wouldn't dare eat it. I also found if the liquid I ate was high in fiber (pureed soups, etc) there was heck to pay. I believe the sufficating feeling you get when you lie down is because the packed intestines are pushing up against your lungs and not allowing them to inflate fully. Before I had my big surgery I had the same feeling and it was because in my case my diaphram had split open and my stomach and intestines went up into my chest and collasped my lung. It was from falling off a horse. But since then I have become very sensitive to the pressure when my colon is full. Even though things are back where they are supposed to be and tied down to prevent moment!
Hang in there! I hope and pray this new doctor will make it his/her mission to help you! And don't think you are being silly or imature to hope that some miracle comes along and you can suddenly eat pizza. I believe that dream is shared by us all!
Nancy

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• By NancyL
• Posted August 7, 2008 at 10:25 am

I meant to add that my GI doctor (who I trust completely) has assured me that there is no danger in overdosing on Miralax as long as it is mixed with the proper amount of water. I used to get my poly gycol by prescription but when it became over the counter (Miralax) my insurance said it was no longer availble by RX. I get mine at Cosco. It seems to be the chaepest i could find. And I don't understand why they don't sell it by the gallon (dry equilvent).

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• By shan789
• Posted August 7, 2008 at 10:54 am

I kind of of know what your talking about, my son has Hirschsprungs and has had over 1/2 his large intestines removed at 11 months. He has taking the perscrpition form of Mirilax and Exlax for the last8 yrs. Last yr. the laxatives quit working he was in the OR for disempactions way to much. I finally talked the his surgeon into doing a cecostomy. I don't know if this is a possibility for you. But it has been 5 weeks and my son has really changed. He hasn't had any constipation, no bowel leakage, or accidents. It lets you clean your system out once a day. I hope you find something that makes your life easier.
Shannon

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• By princessfaith82
• Posted August 7, 2008 at 3:04 pm

Hey NancyL!

It seems we are in the same boat for the most part. I go to meet with a dr. about an intestinal pacemaker on Aug 25 and am so excited! For now though, I too wish that Costco's sold Miralax by the Gallon! My insurance no longer covers the perscription stuff either and i go through it like it is candy.
I am so sorry about your accident with the horse--that must have been hell. I guess the best thing for both of us to do now is keep with our drugs and hope for a magic cure! Please keep me posted as to your health, I will keep you in my prayers.

~Sarah

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• By princessfaith82
• Posted August 7, 2008 at 3:05 pm

Hey Shannon,

I have never heard of a cecostomy--can you tell me more about it? I am so glad that your son is doing better, it does sound liek we have way too much in common!

~Sarah

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• By shan789
• Posted August 8, 2008 at 12:14 am

A cecostomy is an external colon acess device. They insert a tube through the lower right abdomen, into the intestine. Every night my son mixes a solution, pours it in a feeding bag, hangs it on the shower rod and lets it run through his intestine. It takes about 20 to 30 min. then he is totally cleaned out. Since he has had this(5 weeks) he has not been constipated. He doesn't half to worry about when or if the laxatives will work. He actually goes out of the house now. He still does take Miralax to keep everything soft.
He started taking laxatives when he was 3 1/2 yrs.old. We used many different ones, then they quit working.
You can google cecostomy to read more about it. Maybe it would be better procedure. When he had it done it took the dr. about 1 1/2 hours to place the tube, on the 26th of this month he gets his perm. tube. I hope this helps.
Shannon

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• By princessfaith82
• Posted August 8, 2008 at 8:33 am

Thanks Shannon,

I will Google it.

~Sarah

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