# chronic intestinal pseudo obstruction



## prttywmn (Jun 4, 2010)

Very upsetting news by the surgeon re my second opinion for the lap colectomy. I have to go for another sitz mark test since my last one is outdated. I am used to taking 2 24mcg capsules of Amitiza and 25-50 Senokot a day and for the next 6 days I have to eat 4 meals a day and NO laxativives or Amitiza ! I am already bloated and in pain now (day #1) so I can only imagine what the next 5 days are going to be like. I remember before I swore I would never do one again as I went a whole week without going and felt literally septic before.He also thinks my small intestines may be involved - which if they are, then taking out the large intestines will not relieve my symptoms. He thnks I may have "chronic intestinal pseudo obstruction" (google it !) of the small intestines which is rare and difficult to tx. He said if I have it I would have to go to the Mayo Clinic ! I am sooo freaked out - if I have to live this way for the rest of my life then my life is basically over. I can't bare the thought of trying to get through this sitz mark test much less not being able to have the lap colectomy if my small intestines are messed up too- with no cure! Anyone ever had any experience with the chronic intestinal pseudo obstruction? If so- please respond ! I am in an acute state of panic !


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## nowandthen (Jun 17, 2010)

Gosh...I am sorry to hear this. I'm sure you are in shock. I did read about it because in all my reading on IBS, I had never heard of chronic intestinal pseudo obstruction. Try your best to get throughthe Sitz marker test and then go from there. Please keep us posted.


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## prttywmn (Jun 4, 2010)

nowandthen said:


> Gosh...I am sorry to hear this. I'm sure you are in shock. I did read about it because in all my reading on IBS, I had never heard of chronic intestinal pseudo obstruction. Try your best to get throughthe Sitz marker test and then go from there. Please keep us posted.


Thanks nowandthen. Yes - I was in shock. First I had heard of it as well. I had a melt down in the docs office and cried all the way home. I did not take my usual doses of Amitiza yesterday or my laxatives last night and am already up 3 pounds this morning with fluid retnetion and waste I can feel trapped in my bowels. I am already distended and in pain. I can't beleive I have this to go through until Monday. I will not go to the bathroom at all without my meds and laxatives - so I know what I am in for these next 5 days. I will post my sitz results and game plan after I finish the sitz test and go back to the doctor. Thanks for your concern and support and God bless, ~ Pamela


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## Kathleen M. (Nov 16, 1999)

I've heard of it, but mostly we get people who self diagnose that from an acute bout of "googlitis" rather than actually have it. People looking for something, anything other than IBS to explain why they have symptoms.I know the next few days are not going to be comfortable, but try to find something to distract yourself from what is going on in your gut.The more you focus on the worry over this other diagnosis and on how uncomfortable you are the harder the next few days will be. Get a couple of good books or find a video game or some movies (or other hobby) that you can use to keep your mind busy. If you have a relaxation practice or meditation practice now would be a good time to use that. It can be hard to start one during a stressful time (and they don't work as well, IMO, if you haven't been working on it regularly) but it could be something worth trying to develop as life will eventually cause stress later on.People often only try to destress when they are under maximal stress then give up on the technique, but if you can work on it for awhile you may find it really helps in the future. Most people need to practice for awhile before they get good at it.


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## prttywmn (Jun 4, 2010)

Kathleen M. said:


> I've heard of it, but mostly we get people who self diagnose that from an acute bout of "googlitis" rather than actually have it. People looking for something, anything other than IBS to explain why they have symptoms.I know the next few days are not going to be comfortable, but try to find something to distract yourself from what is going on in your gut.The more you focus on the worry over this other diagnosis and on how uncomfortable you are the harder the next few days will be. Get a couple of good books or find a video game or some movies (or other hobby) that you can use to keep your mind busy. If you have a relaxation practice or meditation practice now would be a good time to use that. It can be hard to start one during a stressful time (and they don't work as well, IMO, if you haven't been working on it regularly) but it could be something worth trying to develop as life will eventually cause stress later on.People often only try to destress when they are under maximal stress then give up on the technique, but if you can work on it for awhile you may find it really helps in the future. Most people need to practice for awhile before they get good at it.


Thanks Kathleen. The questionable new dx involving my small intestines totally caught me off guard and then hearing I had to repeat the sitz threw me into a tailspin. I work full time and am active in church so I do have some distrations and I do pray/meditate. A week without laxatives is like a prison sentence but I will somehow have to make it through - one day, one hour, and at times, one minute at a time. I have a stressful job and a handicapped son with no help so I am always stressed out which makes the symptoms worse. Now I know where that saying "my stomach is in knots" comes from - literally ! ;-)I am just going to have to really have faith that God is working everything out according to His plan and pray for wisdom and discernment for the doctors, and for patience and strength for me to persevere. I really appreciate you info and the support. Will post again after the sitz results next week or sooner if I need some emotional support getting through until next week without my Amitiza and my Senokot ! Thanks again and God bless  ~ Pamela


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## fizzixgal (Apr 6, 2007)

Can you maybe clean yourself out with a colonoscopy prep first before starting the Sitz marker test? Get a fresh start? I just had one recently (still waiting for the results) and swallowed the capsule later in the day after having a colonoscopy. My gastro didn't have a problem with that. It gave me a head start on the C and even though I became very sluggish and constipated toward the end of the 5 days, I made it through. When it was done, I took an Ex-Lax.


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## nowandthen (Jun 17, 2010)

I passed the sitz marker test as normal transit but yearslater another gastro doctor asked me if I had taken laxativesright before the test and I said yes, in fact I loaded up on them. He said that was not good, and that's why my transitappeared normal.


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## prttywmn (Jun 4, 2010)

I had to be off laxatives and Amitiza for at least 24 hours before starting the sitzmark test. The last time I had my meds was Monday and I started the sitz yesterday. I have not gone to the bathroom since Monday and I am retaining fluid like crazy. My face and feet and legs are swollen - my abdomen is so distended I can't fit in any of my clothes already - I was up all night with a migraine headache, and today severe nausea is setting in. The doc wants me to eat as "normally" as I can but without having eliminated since Monday I am backed up and having to force myself to eat. I am very pale and shakey and actualy feel "toxic". And I still have today, Friday, Saturday, & Sunday to go







My x-ray is not until Monday. I am at work and everyone takes one look at me and is shocked at my appearance. I called the doctor yesterday to tell him about how I am reacting to not having the Amitiza and laxatives and he said I HAD to finish the test or they could not confirm a diagnosis or plan surgery without it. It wouldn't seem like the test would be that bad to a normal person - but I am sick as a dog ! Has anyone else ever been this sick from going cold turkey off of their meds and laxatives and having to still eat full meals for one of these Sitzmark tests ?!? I feel like I am going to die. It is going to be a miracle if I am able to finish out the work week and I plan to stay in bed all weekend. And yes - I am going nto have to take something after the test Monday to help me go big time or I am going to end up impacted. I have never been so miserably sick in all my life !


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## annie7 (Aug 16, 2002)

so sorry you're having such horrible problems---truly my heart goes out to you. that's what has kept me from taking a sitz marker--the dread of getting all backed up like that and feeling so bad. relly there has just got to be a better way to meaasure colon transit time than this. but yes they tell you that you have to do the test or they won't do the surgery.can you possibly take the rest of the week off work--just so you can rest at home. do you have paid sick leave? i hope so..i know you mentioned the stress of being a single mom with disabled child...but maybe just being at home would make it easier to cope. that's how i always felt when i had to work and was really backed up. the added stress and strain of the job really made everything worse. i hope you can get the rest of the week off. and then once at home maybe you will be able to do some of the things kathleen said to help you take your mind off it at least a little. or just try the relaxation techniques...and oh yes, pray/meditate..prayer helps..gives us strength... praying for you, for God to give you strength to get through this..sending prayers and positive thoughts to you...


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## nowandthen (Jun 17, 2010)

one thing to keep in mind...the toxic/septic thing is a myth. That has been discredited once and for all. So, don't worryabout that and just try to get through.


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## prttywmn (Jun 4, 2010)

Thanks for the support gals







I have to work as much as I can as I am the only one that does my job- no one else trained here to take over when I am gone so it is a nightmare any time I have to take off - even for a day. I have had to take half days off here and there for doc appts and testing and am trying to save my sick time for when I do have surgery ... if I ever make it to that point. Even if the toxic thing is a myth - my body certainly feels toxic and is not handling the sudden back up very well. It is like my intestines are in a knot in total lock down mode and I am shoving food in with no where for it to go ... feels like a huge lump of cement in my gut. OMG - and I thought I was hurting before ?!? This feels like torture. And yes, I do have a hnadicapped son - but he is actually grown. He is 29 and had a TBI (traumatic brain injury) when he was 9 and again when he was 21. He lives with me and can function physically - his thinking is just way off and he can't make decisions on his own very well - so he can't hold down a job and I have 2 of us to provide for on one salary and the medical bills are not helping. Work is stressful but at least I do have a job with health insurance for myself and I am thankful for that. I just have no quality of life and I have already wasted so much time ! I just want to get fixed and get on with it !!! God I hope and pray this sitzmark test will give me the green light to go ahead with surgery. I am just going to have to white knuckle my way through it until Monday. It helps knowing people are out there that really can identify with what I am going through. Thank you sooo much for your paryers and support. I am normally a very strong person and have developed a high pain threshold/tolerance over the years, but going cold turkey off my meds and having to eat "normal" food has thrown my body into shock


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## fizzixgal (Apr 6, 2007)

Wow, well I'm not surprised that it could affect the results but not as much as that. I would follow your doctor's instructions then, or else refuse the sitz marker test like Annie did. My doctor didn't have a problem with my going direct from the colonoscopy suite to radiology, but he also agreed to let me continue on my usual regimen during the test because I'm getting backed up anyway. It does seem like cruel and unusual punishment to force someone to go off the meds for a week for this test. If the meds aren't really working, then the test should come back abnormal and give them at least some idea of what is wrong.


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## prttywmn (Jun 4, 2010)

fizzixgal said:


> Wow, well I'm not surprised that it could affect the results but not as much as that. I would follow your doctor's instructions then, or else refuse the sitz marker test like Annie did. My doctor didn't have a problem with my going direct from the colonoscopy suite to radiology, but he also agreed to let me continue on my usual regimen during the test because I'm getting backed up anyway. It does seem like cruel and unusual punishment to force someone to go off the meds for a week for this test. If the meds aren't really working, then the test should come back abnormal and give them at least some idea of what is wrong.


That is the only reason I am putting myself though this torture. To prove to the doc my bowels WILL NOT MOVE at all without high doses of laxatives along with the Amatiza. They have stopped working completely on their own. I am sooo sick it is unreal and I still have the weekend to go - but i am going to suffer through it. I have gained 8 pounds since Tuesday so the 10 pounds I expected to gain the doc will see when I weight in next time - and have not been eating more than normal portions or really fattening foods. It is fuid and waste retention from the back up. My whole abdomen is stretched out and is tight and hard as a drum. The nausea is pretty strong and I have a bad taste in my mouth. I feel sooo sick - as if I had eaten cement that has hardened in my gut. God - please make it be Monday already ! I am planning to spend my entire weekend in bed. It hurts just to move ! And I have had a horrible headache since coming off my meds and getting backed up. Torture. If the docs had this and had to take this test they would be a bit more sympathetic. I almsot wish I had ulcers or polyps or cancer - SOMETHING that they could see and understand ! UGHHH !!!


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## fizzixgal (Apr 6, 2007)

Ugh, I'm so sorry you have to go through this. But right now, I can only think that if you eat any more solid food you will only make it worse, plus it might be hard to get the laxatives to work once the test is over. I'm only thinking from my experience when I was backed up -- by that point, my usual remedies no longer worked and enemas were only helping to move the little that made it down far enough. I was starting to run a lowgrade fever and was in pain too. But I had to wait from Wednesday until Sunday to do a colonoscopy prep. The only thing that saved me from worse pain was going on a liquid diet. Do you think it might help to do that? Then on Monday do whatever you need to do to clean yourself out.It's just a thought... wouldn't make it easy to get through the weekend, but might make it a little less horrible, and help with getting back to "normal" on the other side.


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## annie7 (Aug 16, 2002)

oh yes, so sorry you have to go through this horrible ordeal. the bed rest idea for the weekend sounds good. maybe with a good book or movie to help take your mind off the pain. or meditative prayer. sometimes a warm heating pad on the tummy helps me. and keep your mind focused on monday...praying for you. it won't be easy but you'll get through it.sending prayers, positive thoughts, and encouragement your way...


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## prttywmn (Jun 4, 2010)

fizzixgal said:


> Ugh, I'm so sorry you have to go through this. But right now, I can only think that if you eat any more solid food you will only make it worse, plus it might be hard to get the laxatives to work once the test is over. I'm only thinking from my experience when I was backed up -- by that point, my usual remedies no longer worked and enemas were only helping to move the little that made it down far enough. I was starting to run a lowgrade fever and was in pain too. But I had to wait from Wednesday until Sunday to do a colonoscopy prep. The only thing that saved me from worse pain was going on a liquid diet. Do you think it might help to do that? Then on Monday do whatever you need to do to clean yourself out.It's just a thought... wouldn't make it easy to get through the weekend, but might make it a little less horrible, and help with getting back to "normal" on the other side.


I have has a severe headache since Wednesday along with the pain, bloating, and fluid retention/weight gain. The nausea is pretty bad and I am having a low grade fever and chills now too. I called the doc and asked if I could switch over to liquids and he said NO ! I have to at least eat 3 regular sized meals with small snacks in between and at night. I am also having to eat my trigger foods as well so he can see how my intestines are processing - or not ! I am journaling my intake/output (none so far !), daily weights, and symptoms ... not that he really cares ! I just pray the x-ray Monday will prove to him whatever it is he needs to know to fix my problem ! I am determined to make it through until Monday - just hope it doesn't take the radiologist long to get the report to my MD. I am going to beg for him to rush it through !!! As soon as I am done with the x-ray I am starting on a liquid diet and doing whatever I have to in order to empty my GI tract !!!


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## prttywmn (Jun 4, 2010)

annie7 said:


> oh yes, so sorry you have to go through this horrible ordeal. the bed rest idea for the weekend sounds good. maybe with a good book or movie to help take your mind off the pain. or meditative prayer. sometimes a warm heating pad on the tummy helps me. and keep your mind focused on monday...praying for you. it won't be easy but you'll get through it.sending prayers, positive thoughts, and encouragement your way...


Yep - I have my laptop, Bible, books, movies, Christian praise & worship music, TV etc ! & am just chilling until Monday morning. Heating pad is also in place ! lol







Thanks for the prayers, positive thoughts, & encouragement







I appreciate all the support in walking me through this aweful procedure & just oray this is the last of them ! Will keep everyone posted. Hope you all have a wonderful weekend & thanks again for being so understanding ! Love & hugs ~ Pamela ~


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## annie7 (Aug 16, 2002)

you go girl! you're going to make it! the intake/output journal sounds like a great idea. hopefully your doc will care enough to look it over...if he only had any idea of what you're going through...and yes, focus on monday and the cleanout--whatever it takes!


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## fizzixgal (Apr 6, 2007)

prttywmn said:


> I have has a severe headache since Wednesday along with the pain, bloating, and fluid retention/weight gain. The nausea is pretty bad and I am having a low grade fever and chills now too. I called the doc and asked if I could switch over to liquids and he said NO ! I have to at least eat 3 regular sized meals with small snacks in between and at night. I am also having to eat my trigger foods as well so he can see how my intestines are processing - or not !


I've never heard of prescribing a specific diet for the sitz marker test before. But it sounds like you really don't have any choice then. Count down the hours then! Only what, 24 to go now? You will get through this... hang in there and please let us know how you're doing tomorrow.


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## prttywmn (Jun 4, 2010)

annie7 said:


> you go girl! you're going to make it! the intake/output journal sounds like a great idea. hopefully your doc will care enough to look it over...if he only had any idea of what you're going through...and yes, focus on monday and the cleanout--whatever it takes!


Toady is my last day - thank the good Lord because I am sooo sick. I had nooo idea what I was in for ! I had forgptten what this was like before as my last one was about 10 years ago. I have to go to work after my x-ray tomorrow morning, but plan to start popping Senokot and Amitiza as soon as the x-ray is taken, and start on a liquid diet. I have no idea how long or how much it is going to take for the cleansing, but thank goodness the bathoom is right around he corner from my office and if I have to plan on sitting on the toidy all Monday night then that is where I will be camping out ! I just pray to God I am not impacted !!! Will be in touch when it is over and thanks again for cheering me on !


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## prttywmn (Jun 4, 2010)

fizzixgal said:


> I've never heard of prescribing a specific diet for the sitz marker test before. But it sounds like you really don't have any choice then. Count down the hours then! Only what, 24 to go now? You will get through this... hang in there and please let us know how you're doing tomorrow.


I guess he wants to see what will happen with "noraml" food intake - to see how my gut will react, as I have limited my "trigger foods" for sooo long now. I just feel like my body is in shock as my last movement and meds were last Monday- so about a week ago. I am up 12 pounds and totally miserbale. I didn't even gain this much weight when I was pregnant ! lol I can't wait until I don't have to eat - and liquids for awhile sound really appealing ! Will let you know how it goes once I get the results back. I have to go to work tomorrow after the x-ray so I will post again as soon as I know something. Thanks again for your support and encouragement !


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## Kathleen M. (Nov 16, 1999)

Well the problem with tests like these is if you eat abnormally they can't tell if the abnormal result is from the abnormal eating or not. So they usually want everything to be as close to what happens when you don't take medications and eat three meals of actual food a day as you can be. After all you see people go on a show like Survivor and it is pretty common for the abnormal eating patterns on that show to make people not have BM's on their usual schedule.


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