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Pseudo Blockages, malabsorption and severe anemia...am I having fun yet?  

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LK
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May 13, 2019 8:28 pm  

The affects of "Malabsorption", "Anemia", and that little something I was told a while back that I had..."Pseudo Blockages" (PB).  It seems this PB has something to do with the malabsorption, which in turn has to do with the Anemia to some degree.  If I land in the hospital, has anyone taken your lap top with you, how do you keep it safe while you are getting tests, surgery, or asleep.  Haha..do they have an alarm I can set?  Tony? Okay, dumb question, but at this point in the game I expect nothing less...at times. The iron infusions have been wicked to deal with, anything I was dealing with before about doubled in affect. I have almost every reaction to the infusions one can have without being anaphalactic (sp). I am not sure I want to pay for these kind of affects in the treatment, but it is a necessary evil isn't it? With the Iron count at 2... (one, zero) and the hemoglobin at 79, blood transfusions are done at 70, this has been exhausting all around. My fingers and brain, what is functioning, are the only things with energy and sometimes I am not sure about the brain. I have been desperately tired before but not like this. I let the doctor know some time ago, that I was not interested in another 13 1/2 month hospital stay, unless absolutely necessary, and as much as can be done from home is being done. But I fear that this time is drawing neigh. If you or anyone knows anything about the Psuedo Blockages and the affects they have, your experiences, I would appreciate a share time here. In the mean time, I just keep pushing thru one thing at a time and make a point of gettin'er done. I am not down emotionally, in the mouth or in the butt, and just handle one issue at a time and let it go.  I am determined this will not get the best of me, and so far, so good. I manage what I can and if I can't, it just gets done later. There is always later...so far anyways. I actually thought I had posted this once before...go figure! Thanks in advance for starters.

Linda

Linda


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IleosTony
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May 13, 2019 8:56 pm  

Hi Linda,

 

I've never had anything stolen from me in the hospital. I take care to let staff know what big-ticket items I might have with me so that they write it down. This way there's documentation of what I have that I can sound the alarm over if it walks. If I have to leave the room for procedures I put valuables in a drawer so that they are not in plain sight. I also suggest you ask the nursing staff to put your laptop at the nurse's station when you have to go somewhere else for a procedure/test. It doesn't hurt to ask. You might find it helpful to get an antitheft device of some kind if possible. This community clearly means a lot to you and you to us, so I hope you don't have to part with your laptop if you have to go to the hospital.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
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May 14, 2019 12:52 pm  

Hi Linda,

A few points I'd like to make:

Regarding laptop/personal item safety in hospitals, I've never brought a laptop, but I have brought my cell phone many time without incident. I have seen others bring laptops for extended stays, but if you do, I suggest maybe getting a lock like these: https://amzn.to/2Ec2oyK  

I don't know if iron infusions cause the same side effects as oral iron supplements, but oral iron can cause constipation, which in our case, may cause a blockage. This would be a question to ask your doctor or nurse. With oral varieties, there are different types that are more gentle and don't cause constipation. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sasquatch
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May 15, 2019 3:43 pm  

I dealt with my personal items with my last stay in the hospital.  They told me, if I didn't have someone with me to look after them, security would lock them up until I was out of surgery.  I didn't have a lap top, but I did have a tablet.  Luckily, my niece was able to get me to the hospital, and my Mom was able to get there before I was taken back, so I didn't have to have them lock up my stuff.  I did however have an alarm set on my tablet to wake me up, my surgery was on a Monday, and I really didn't want to miss the Monday Night Football game!  I did wake up, but I only made it through the 1st quarter before I wanted to go back to sleep.

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


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LK
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May 16, 2019 5:26 am  

IleosTony...Thank you for sharing that with me. It was somewhat of a relief to read all of the replies and knowing you could take these things to the hospital is a new concept for me. The most I have ever taken as been a cell phone, but then again it is just a flip phone for 25 bucks a month and inconvenient to todays standards.

Eric...wow, I had no idea there was such security available for these things. I am not sure they would let me drill holes in night stands. I have learned this week that many people take computers and such with them to the hospital. It would be interesting if the hospital could have something readily available for those who want to do this. All kinds of "buts" and charges there I bet. 

Sasquatch...I had a little chuckle about the football game and you falling back asleep. Oh the joys of anesthetic brain. It sounds like you had an emergency surgery?  Some of the personal experiences I read made it so much easier for me to grasp, that tho I felt secluded, I was not really alone in this whole thing. 

I have a question for you fancy phone persons out there. If I bought an updated phone, would I be able to text, check my email, check in here and also maybe watch some you tube or see Pinterest on it?  Is there a cost for each of those items that would raise the amount I can afford each month?  Are they easy to get to and good heavens , are the instructions in the owners manual to do these things, or is it something they set up for you when you buy the phone? What phone would you recommend? Thank you all for your input, I really appreciate your help in this matter. 

Thanks Guys!

Linda


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IleosTony
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May 16, 2019 8:43 am  

Hi Linda,

 

You can do all that with just about any updated smartphone incarnation. Some of the posts on this community were written on my phone.

 

I have an iPhone, but there are plenty of other phones that cost less that will be just as usable for you. You don't even need the very latest and greatest in order to do all you want on it, if cost is a concern.

 

Youtube is free with some ads.  Pinterest shouldn't cost anything additional either. None of what you mentioned should cost anything beyond the cost of your data plan. In fact, I would be terribly surprised if the hospital didn't have a wifi network for patients to use at no additional cost, so you might not even need to use your cell data to access the Internet. Data plans are structured in various flavors, the cost being a flat fee in some cases for a certain amount of data.

 

Setting up email is something that whoever sells you the phone may be willing to help you with.

 

All things being equal, I would recommend either an iPhone 7 or one of the Samsung Galaxy models, such as the S7 and later. The battery life on those is pretty good and the software familiar enough to the modern world that you could at least get some help figuring it out if you get stuck. You'll find that opinions greatly differ on the question of which phone to use, so this is just another two cents. Hope it helps.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LLNorth
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May 16, 2019 11:49 am  

Hi LK, my phone is a used/refurbished iPhone 6, and I seem to be able to do and get a lot with it - and I am not a very skilled tech person. The only thing is, the screen on any phone is pretty small. 

I love the smell of coffee in the morning. It smells like .... victory.


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Sasquatch
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May 16, 2019 2:24 pm  

Sasquatch...I had a little chuckle about the football game and you falling back asleep. Oh the joys of anesthetic brain. It sounds like you had an emergency surgery?  Some of the personal experiences I read made it so much easier for me to grasp, that tho I felt secluded, I was not really alone in this whole thing. 

No, it was my planned proctectomy.  I was scheduled super early in the morning, Mom needed to use the valet service, but it didn't start parking cars until after I was scheduled to arrive.  So my niece dropped me off, and Mom came right before I was taken back.

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


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LK
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May 16, 2019 6:05 pm  

Wow..it seems I need to go back to school or college! I appreciate so much the info you have all shared here.  This is valuable to me.  As far as pennies go, they are precious, we don't have them in Canada anymore.  I did not know we cold buy a refurbished phone, and it does sound more reasonable to take phone along then a lap top. I would rather do that for sure. The nurses should have some place safe to keep it while in surgery as they used to lock up my wedding rings from time to time. I do not learn new tech stuff easily and this frustrates me beyond all end. It took me forever to learn how to get to email. But I imagine if I can concur this, I can concur a phone...eventually. I had not really thought about the size of printing on the screens of a phone, but that could be an issue to some extent. I have really just figured one could blow up the screen the way I do on my laptop...hmmm...even blown up, it could take a while to read something like that on a phone!  I get upset when I can not blow up the screen on the computer for spell check. That is just down right annoying. Lots to think about and I have already started looking into this issue. Cost is for sure an issue, I was not to be a widow as I figured with all my health issues, it would be me to die first, or at least not until I was in my late 90's, we were going to grow happily old together in our rocking chairs watching birds, cherries turning red, thunder storms and northern lights together. Instead he died to age 48. Reality sucks sometimes.?  Thank you. All.

 

Linda


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IleosTony
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May 16, 2019 6:17 pm  

Hi Linda,

 

there are some phones with fairly large screens. Some people call them phablets. You also could get a tablet with or without cellular capability. The Amazon line has some larger-screened models as well. You might not need it to have cell capability if you already have a phone and all you want to do is access the Internet, as long as you can get access to wifi in the hospital. Android and iOS phones do allow you to enlarge text if you need to, but it's definitely better to invest in something with a bit more screen real estate if text size is a concern.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
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May 17, 2019 12:33 am  

Update...some results are in. I think I am in trouble here. It was not a very good appointment yesterday, but at least I know what is going on with my guts for sure now.  The CT Scan confirmed...I have short gut syndrome.  I have Pseudo Obstructions. I have been told this before. My Iron is still not looking good after three infusions. My CBC is lower yet again.  They do not know where exactly where I am loosing blood from. She is ordering a scope. I do not have an appt. for that yet. The pain has been acknowledged!  This is huge. I  have had continual pain for about three years in the 7 and up range. My last hospital stay, was the worst experience I have ever had in hospital. The nurses would not listen and after six days of  uncalled for judgement, insinuations, and treatment from them, and waiting 7 hours for pain relief, I left the hospital unadvised on my own steam at 12:30 am. My son picked me up. It is an 18 bed hospital, there is no excuse for any of what I went thru. Period! I would not recommend doing this for just anyone, and this is not what Eric or his site recommends, I had nursed in Geriatrics, I new darn well how they had failed professionally in this hospital that week.  I had little to no sleep in 2 weeks prior due to increasing pain. The week before, knowing I had a partial blockage, I had carefully washed, and rinsed my floors, and been weeding my gardens. Thinking that moving that would for sure move my guts into submission.  After all, walking is the best medicine with a bowel blockage right? I am painfully aware that my guts are different then the average, and after 9 bowel surgeries, they certainly are not normal. Once home the pain remained just as horrid. I had no fever. I had told a friend on the phone in a pile of tears, that on the Monday, in hospital, it felt like something had torn inside of me the first days in the hospital and when I had told this to three different nurses and my GP, they did not listen. Insisting I needed to walk to get things moving. I had been walking but because they did not see me, they did not believe me, and I question if any of them had ever done the work of washing a floor, let alone in #12 pain. The pain was situated so high and under my ribs, the bloating immense.  Mattress Olympics was the only sort of relief I could get. I could feel the air and fluids moving from side to side as I turned, but never out. I even layed down with my butt in the air and my face on the mattress.

Back to the appt. yesterday. The internist said that she has never seen anything like this.  What I have of small bowel, in the area above my belly button up under the rib cage area, the bowel is very enlarged. Beyond what a large bowel about to perforate would be. The bowel walls are horribly thickened, I did not know anything about that or what can cause it, she had also said she had never seen anything this bad. My large bowel was removed in 1996. Two years ago, an x-ray report with a bowel obstruction, read, " the large bowel is grossly enlarged. My GP said something about a NG Tube. I was not vomiting, so I said no, not while I was awake ever again. I reminded my GP my large bowel was removed in 1996.  "I have never seen anything this bad the internist said" the thickening looks like the bowel must have perforated in several places and then healed over with tissue, "trapping a lot of air and some fluids in the thickening", attaching bowel to bowel. Yup, that was what it felt like too. "You need surgery and soon", "you will likely loose more bowel because of this". Then she explained how Pseudo Obstruction is like intestinal failure. Like Heart failure I silently questioned? She was watching me closely. I nodded,  she reached out and took my pulse and my BP. Pulse was normal and my BP had actually gone up a little, as of late it is around 97/ 46. During infusions, my oxygen level is about 72 laying down part way. Tghe affects of low hemoglobin.

As things stand right now, I was told I would likely need Iron Infusions for the rest of my life and she was shocked to learn we had to pay for them.  She said my Doctor should apply for "special permission" based on the malabsorption issues. I told her he had basically refused. Insisting it would not be covered   She is faxing him a note to do it and to advocate for his patient as well as to get coverage for the Vit.D , 10,000 units that I need daily now also. This costs about $40.00 a month with taxes.  I need to take it until she tells me to stop. She wants me to see my GP, ASAP.  With the lower CBC again I may need that blood transfusion soon. I forgot to ask what my numbers were. I am not  vegan and always made sure I ate my vitamins and minerals. Just as vegans make sure they get all they need too.

I was able to find a video and found info from the Mayo clinic about Pseudo Obstructions. I have learned that they really do, do intestinal transplants! Tho it was not talked about, I am not sure how I feel about something like this and am thinking it may be my reality, perhaps sooner then later. I am not sure that the combination of Auto Immune Disease will mix well with something like this. This is all very tiring and I am exhausted beyond what I have ever experienced. 

If this kills me, and there is a very real chance that it may, I am okay with that. I became a  Christian as a child and have lived the life all along. God knows me and what I can handle and I know him.  I know some believe it is hogwash and others are on the fence. It is whats in your heart that counts and whether you have taken time to now the Lord. That is all he asks of us.  do not stand in judgement of someone who does not believe. It is a personal choice and something that has gotten me thru all the trauma in my life. 

At that, I apologize for the length of this. If you hung in there to read it, thank you. If you believe in prayer, please pray. If not, your good wishes are heart felt and appreciated. I will let you know when I know more. I have the echocardiogram on the 7th. Thank you all.

Linda


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LK
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May 17, 2019 12:40 am  

Tony...Thank You. such great information! I had no idea and because I am so tired, I have no patience for being in public right now. I may call my sons friend and ask him to come to the house with info for me. He works at  "The Source" they have all kinds of electronics and phones. I like the idea of being able to blow up the screen, the only issue is that it likely is not on a payment plan as phones are. Hmmm. Everyone is so helpful and I appreciate all the input and ideas.   

 

Linda


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john68
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May 17, 2019 3:50 am  

Hi Linda, The darkest hour is always before the dawn, The bad hospital experience was uncalled for but you seem to be getting answers now. Still a battle to fight and you can and will do it. You are in my thoughts and prayers. 💪

ileostomy 31st August 1994 for Crohns


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IleosTony
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May 17, 2019 7:06 am  

Hi Linda,

 

I do believe in prayer, and you have already been in mine and those of my wife.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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sjlovestosing
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May 17, 2019 7:40 am  

Oh Linda, I am so sorry that you are going through all this. I will pray for you as well. Some days the mountains seem higher than on others, but I know God is with you in all of this and is giving you the strength you need. Hang in there and take care.

Stella


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sjlovestosing
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May 17, 2019 8:34 am  

Hi again, Linda. I just read today's devotional from Our Daily Bread and it seem to appropriately apply to your  situation. The web address is https://odb.org/2019/05/17/gods-amazing-hands. I hope this brings you comfort.

God bless,

Stella


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Marcie
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May 17, 2019 10:54 am  

Gezzzzzz Linda,  bad all the way around. I was in the hospital 2 weeks ago-- could not breath-- scope--(which my pouch blew off-as they pump air inside you) :-)   For now, I have a large hitial herrina.  Which is logged up into my ribs and lungs.  I keep sticking this lump back in and under my ribs..   I need more education about that surgery for myself to decide what to do?? Do u think u may have the same also? Keep asking them questions and run the Doctors for answers you want and go for it.  Forget the nurses.  They know nothing of what YOU / we r going through.  The textbook is wasted here-- we need love and a hand to hold.

Time to rest yourself--no more weeding !!--As we all do, when we get into this area of hospitals , tests, back talk, etc.  We get so nervous.  So that does not help matters at all !

Let your family and friends help u out for a few weeks. You are number one-- I am gong to p.m. you later.. Something to think about in the future. You have to get better..

No place like home huh ??? M.

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
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May 17, 2019 12:19 pm  

Linda,

Thanks so much for sharing your recent experience. Learning more about you situation is , of course, necessary for you. BUT you are also helping others who are having or will have to deal with a similar conditions. There are still just so many things that are unknown about IBD. Hopefully the medical community will learn more and know how to deal with the many manifestations of IBD.

I am very sorry to hear of the ongoing pain you have experienced. That is really horrible. Do you have any kind of pain management help you could get? Sounds like you are in a very small regional hospital, so you might have to seek help elsewhere.

Its good you are reading about your condition and keeping informed.

I do send good wishes your way. Sincerely!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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May 17, 2019 4:38 pm  

Linda, I'm so very sorry to hear about that negative experience.

Was the pseudo obstruction labeled as "Chronic intestinal pseudo-obstruction (CIPO)"? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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May 18, 2019 4:55 am  

Linda, 

I am so sorry that you are going through all this. I hope everything works out for the best. I feel your pain with the anemia. I've had about 5 iron infusions in the last 7 months and was just ordered 3 more that i need to schedule soon. 

Please take care of yourself. You know your body better than anyone. If you feel something isn't right, don't let doctors tell you otherwise. I'm not very good at that myself, which is probably why I am in my current state but I am trying to be better about advocating for myself. My husband also does a great job of advocating for me. He has gone to every doctor's appointment with me since my emergency surgery almost a year ago. 

Keep us posted. Tons of positive healing thoughts are coming your way.

Liza

-Liza
“May your day be bright and your bag be light.”


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