DIOS/partial blockage & admission

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rubyroselee

New member
Hello,

Well, got admitted last week. Turns out my tummy issues were actually related to a blockage brewing. I have been having stomach pains for months after I ate, and then finally last week I ended up in the ER. They did a CT scan and found a blockage. Luckily because I was still having BM's and everything they determined it was only partial (whew!) and didn't need surgery.

I went to one of the closer hospitals near my house because I wasn't sure what the issue was. I was sort of upset at myself for not driving further to my CF hospital, because they surely had no clue how to treat me. I had to beg them to contact my CF doctor because I knew I had to take Golytely or something to clear the blockage. It took them 2 days just to get that ordered. So I was on clear liquids that entire time and lost a bit of weight. I almost knew that I had to get discharged in order for me to get better because I wasn't getting what I needed there, and then at least I could take myself to my CF center if I needed to. I got myself cleared out enough to eat some solid foods and got discharged. So I'm home now, but still dealing with a little bit of cramping. I have been taking it easy with the foods and eating lightly, taking Miralax 2x/day and drinking lots of water. I'm a bit weak from lack of food, but I'm hoping that gets better soon. I plan on calling my CF doctor tomorrow to see what I'm supposed to be doing to prevent this again.

If anyone has any words of encouragement or advice regarding this I would love to hear.

Thanks!
 
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falloutboygurl16

New member
Hey i know what you are going through and though it is so tough and seems like it will be a never ending battle do not give up! I was diagnosed with DIOS a year or 2 ago i believe?? I also got my gall bladder out around that time...i believe that was a huge factor as well AND they did a C-diff culture that came back positive so i took meds and cleared up so nicely. C-diff can cause intestinal blockage so just make sure to let your dr know and every now and then when i get backed up i get cultured for it just to make sure. :] I just make sure i take miralax 2 times a day and i take 2 24mg amitiza (lubiprostone) as well as 2 250mg magnesium vitamins for this. It has worked really well for me and i had some REALLY tough times figuring out everything. Also make sure to drink AT LEAST 8 cups of water a day. That is a HUGE help. If i start to feel a tiny bit of blockage i do take magnesium citrate and that usually works for me very well. I swear intestinal issues are the worst! i hope you find what works for you <3 I also found out i have gastroparesis which is a main reason why things are not too great for my digestive system.
 
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rubyroselee

New member
Falloutboygurl16 - Thanks for your reply. I am planning on calling my MD tomorrow to see what sort of maintenance I should be doing, because I surely don't want to experience that again! What exactly does the magnesium citrate do? I have never heard of that. Thanks.
 
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jbrandyn

New member
I had this keep happening to me and it turned out to be alot of scar tissue around my intestines. So if you have had abdominal surgery it might be good to ask about that.
Best wishes,
B.
 
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beleache

New member
Hey Leah, So glad you didn't have to have surgery ! Ty God ! I had a similar experience last Christmas. 2 days before Christmas Eve I was in terrible pain. Went to my local hospital (big mistake) & it was discovered I had a blockage. Thank God the surgeon that i was assigned listened to my CF GI dr.! he ordered miralax , mucomyst & another laxative I think. Thank God again the blockage passed & I was able to go home Christmas day ! The drs at that hops & my CF drs all tried to get me transferred but my ins co wouldn't do it ! So now I will do my best to get to my cf hospital even though it is far.
 
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rubyroselee

New member
B - Thanks. I did have surgery at birth, so maybe there is scar tissue. Hoping it doesn't happen again though :)

Joni - Oh no! On Christmas Eve :( That's great that your surgeon listened to your CF doctor. I had a really hard time even getting anyone to call mine. I kept telling them that I needed a strong laxative to clear out my system, but no one wanted to listen to me. It took them 2 days to finally get things in order. I definitely know to head to my CF center next time it has to do with abdominal pain!
 
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TerriC

Guest
Hi Leah,

My 24 year old daughter has been suffering with DIOS for a few years with the last couple being pretty bad. She also had abdominal surgery as a baby (meconium ileus) and I am firmly convinced that this is a major cause of all the stomach issues that seem to be appearing especially in the older CF population. She has recently just completed a 6 week liquid diet that seems to have helped somewhat but she take 500 g of golytely every night as well as mineral oil. She has also been diagnosed with intusseption which is rare and occurs usually in very young children and a small number of CF patients. It took us about 6 months for this diagnosis and numerous trips to ER at our CF centre to find this out. She has not had an attack since she started her liquid diet but still has days where she is not feeling 100% either. We have discussed surgery with our GI doctor but he is very reluctant to go there as he explained that this could bring on a whole new set of issues. Please share any new treatments that you may undergo as we are still looking for help with this serious issue. Good Luck!
 
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rubyroselee

New member
Terri - So sorry to hear about your daughter's issues. It is not fun, especially when surgery is being considered. I will definitely keep you posted if I find out anything. I am seeing my CF doctor tomorrow. I am not sure what my treatment plan with be.
 
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rubyroselee

New member
Well, I went to my doctor this week and it appeared that all was good. He gave me some Golytely for home and told me to continue with the Miralax 1x/day for another week and then taper off of that. However, I started with really bad abdominal pains again today after lunch. They had gotten pretty severe, but not as bad as they were when I went to the ER. So I downed another dose of Miralax and took it easy tonight. I hate taking 2 doses because it gives me a bit of cramping, but I guess I had to do it. It was either that or start the Golytely again. So I'm hoping this does the trick, or else I'm going to likely have to call my doc next week again.
 
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Aboveallislove

Super Moderator
Leah,

I'm wondering why your doctor is having you taper off of Miralax? Our son is on 1.5 - 2 adult doses daily (he's 3.5) because he gets backed up without. It is maintenance for him (and I think lots of others) and to prevent a back-up; not to respond to one. When things still gets backed-up we hit with Milk of Magensia and could go up to 3. Just thinking it makes more sense to do the maintenance than get the backup. Also, if you spread it out throughout the day 1/2 4x a day, does that help with the cramping??
 
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rubyroselee

New member
Thank you. I went back up to 2x/day on my own and that seems to have fixed the abdominal/blockage pains. I think I'm going to have to stay on that dose in order to keep clear. I did end up splitting up the doses a little bit and I have not had any cramping from the Miralax since doing that, so thanks for that idea. I think this will be my new maintenance dose!
 
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