Community Forums

Pseudo Blockages, m...
 

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

Page 2 / 2
  RSS

LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
May 18, 2019 10:33 pm  

Hello. Your replies and encouragement means so much to me. Thank you all! I have to admit, that my son knows, because he and his family live in the basement suite, but I have not told my family yet, I still need to digest this...and it can be digested! Haha. I am not very thrilled with what I have been learning this week. I guess that is to be expected. I have never thought of myself as sick or sickly. I always just felt that I was malfunctioning again. I guess it is a little worse this time. Lol!

Sasquatch-I am glad it was not another surgery. That would have sucked. So glad you have a good support team. It is so important to have family/friends that support, help, visit, whatever they can do. Not putting too much on one. At this I admit my support system is weak, as I do not get out much, but my neighbors are helping drive to appts. and I really appreciate that a lot. A neighbors old girlfriend came for three days and not only drove me to a distant appt. she also did some house work I am not allowed to do right now. So grateful for her time and energy.

Eric-Yes- it is CIPO. I saw a video last night that brought reality to the light, the girl is so young to be going thru this. I would like to contact her without having to go thru social media to do so. We'll see. This is the second time I have had malabsorption, but back then I was not diagnosed with CIPO.

Dona-I have relatively good pain management, but there are times it gets a little tough. It is a very small hospital with a bunch of bad attitudes running around. If this is how nurses are trained these days, they are failing patients majorly, and in turn the system. When the internist said she has seen a lot of what I have told her in hospital, it sure makes you wonder about the mentality of those in charge and training. The Medical Day Care Unit is on the way to the ER, same hallway, My last Iron Inf. was with a doctors order to have the lab come and draw blood while I was being infused. The lab tech refused to stop in that room to draw my blood and I tell you, I had words with the RN, I told she is to advocate for her patients, she did get the tech to come, but, the Tech when she finally came to do her job. Gave me the same song and dance about not coming there to draw blood. I think sometimes that they just do not know how someone may feel with an Iron count of 2 and I told the nurse and lab tech, in no uncertain terms how the Anemia, Mal- absorption, and fat loss feels in my joints with no fat to cushion the bones and the muscle degeneration adds to the weakness and pain. Going down another long hall and then waiting in the hard chairs, is nothing short of painful and exhausting beyond what they seem capable of imagining. I think a course on Sensitivity is needed in this hospital badly. After that last week in hospital, I tried to meet with the powers that be, my five calls and messages, never rec'd a return call. One day, I will go above their heads.

Stella- Thankyou. I get my Bible Devotions from Dr. Charles Stanleys Intouchcanada.org ministries, but was raised with The Daily Bread for devotions. I find it a little more in depth. Thankyou for the contact, I read it and yes, it applies here.:)

Marcie- I wrote above that a CT Scan had been done for them to know with certainty what is going on with my guts.There is no Hiatal Hernia. Not the same thing at all. You will get such relief from the surgery to repair yours. I am too tired to be nervous.

SqueakyandLiza- So nice to hear from a newbie here. I have been anemic before but not to this extent. If your getting infusions, you are pretty low. Do you know what your numbers are? You are allowed to know them. Do not be afraid to ask if you have not. The Hemoglobin, the job of the red blood cells is to carry oxygen thru the body and brain. This adds to greater fatigue combined with the iron. My iron was 2 and my Hemogl. was 79, and it has since dropped again. How long have you been having Iron Infusions? Do they know the cause of your low iron? I hope things get better for you really soon. This can be a tiring thing to go thru and it is important to get the rest you need in order to help you cope at the same time as remaining strong. I wish you the best!

I have that ASAP Doctor appt. this Week. I will keep you all up to date here as best as I can. I have never known anyone to have this, it is a very interesting learning curve.

Linda


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2210
May 21, 2019 4:17 pm  
Posted by: LK

Eric-Yes- it is CIPO. I saw a video last night that brought reality to the light, the girl is so young to be going thru this. I would like to contact her without having to go thru social media to do so. We'll see. This is the second time I have had malabsorption, but back then I was not diagnosed with CIPO.

Was this girl Sara Ringer of Inflamed and Untamed? https://www.inflamed-and-untamed.com/ She's a good friend of mine and I know she talks about CIPO a lot! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
May 26, 2019 6:40 am  

I had my ASAP apt. with my Gp. On wed. a.m. his office called to remind me of my apt. and said that the half hour had been booked for it. I had not done that, so I figured my GP had heard from the specialist and he booked it. Then on Friday a.m. about 8 a.m. I rec'd a call from his office again to make sure I was going to be there. That is something they have never done in the  30 plus years I have been going to this office and 10 yrs. with this doctor. I figured I had better pack  an overnight bag, if they were making sure I was going to be there and for that half hour apt. to boot. Up at 7, got things ready here and took the dog out,  my ride left on time, we drove half the hour there and later the half an hour back. After all the "making sure" things going on, I actually felt a bit nervous! Not like me at all. Turns out the whole morning felt like a waste of time and energy. My Gp had no clue about the diagnoses or the referrals to the Cardiologist, or Gastroenterologyst.  He said he knows not one thing at all, about CIPO and said to ask the gastroguy.  After not sleeping two nights in a row,  I could have just stayed in bed and listened to the dog snore!  Have you ever had an apt. that made you feel like it was a complete waste of time and energy?  He did take the time to inform me that the town over does not have to pay for Iron Infusions, nor the one bigger then that one. I have been told to contact the manager of our hospital and make a fuss about the fee for the infusions and to try and get a refund on the four I have had.  Apparently all they have to do is to get them from the hospital pharmacy. What the heck!!! Talk about a breakdown in communication somewhere.  I guess I have some "Curve Balls" to dodge eh, Tony?  Any advice on fighting a broken system anyone? 

Linda


ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 2 months ago
Posts: 67
May 26, 2019 6:47 am  

Ah, so the writing on my profile wasn't a waste of keystrokes. ;-) 

 

I would say doing what they advise regarding those fees might go some way toward taking the edge off that feeling of powerlessness and like the appointment was a complete waste of time and precious energy. You'll have gotten some good advice, assuming your actions in taking it bear fruit.

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


john68 and LK liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1238
May 27, 2019 1:51 pm  

Hi Linda, Health care seems to be the same the World over. Yes the best Medical staff but it’s the bit that joins that all together that’s the let down. It’s going to be a case of plugging away to get results. 

ileostomy 31st August 1994 for Crohns


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
June 3, 2019 6:43 am  

Hello All...I can't seem to sleep without tossing and turning these day, so I give up for the night now.  I think I know the reason for that..."STRESS".  It is  more prominent then I have ever experienced.  Between my car and this malfunctioning body  there's a whole boat load of it.  Anyways, Yesterday after a huge bout of  feeling caged in, I took a Rubbermaid stool and sat outside in my flower bed and weeded sitting down.  I only worked on the easy to pull ones and I did not push myself. I think I took more pictures then weeds.  I discovered that my landscaper son thought my 20 Panseys plants were dead and he cleaned them all up and out for me.  Daniel is the water specialist for a landscape company, so all he really cares about is no leaks, timing and a good location! I actually had a good laugh over this. Anyways, I have my apt. with the Gastroguy later today.  (Moviprep was not too bad to take.)He is doing two scopes, a gastrix scope and the Ileoscope, under sedation. This marks the second IS for me.  I have my Echocardiogram on Friday this week also, around 10 a.m.

Eric- yes, it is Sarah Ringer in the video. She has been thru the ringer herself that young gal. Thankyou for the address, I had trouble locating it again, so I appreciated that a lot.

Tony-and John- You can bet your boots I am fighting that bill.  I am just not sure I will win. Anyone in authority are so sure of themselves and very short and blunt with their answers. I think the anemia, and low CBC are affecting the information in my brain.  You add that to post concussion syndrome and I am hooped! I will attack it as soon as I can, but the fatigue is really making thing hard to do and get done. 

Also, I did buy a new cell phone. It came with the plan, a  (Android?) Samsung J3 and I am having fun playing around on today.  No problems reading the screen and it does expand also. I am not sure why, but I am finding it pretty easy to get around on. I was able to get music, texting and access to my internet, so I can see my email and keep an eye on here also. You all mean so much to me, and I almost feel like I know you in person. Thank you for that. I bought extra data, just in case I mess up and a case for it too...okay...and the little fan...what can I say, I am still menopausal. Daniel fixed me up with Pinterest and Sky View. If you have not heard of this, you can point your phone to the sky and it will tell you what stars and such are above you. I only had him put free apps on it.  I had him pick up some headphones today too. If I am going to do this, I am going to do it right.  I feel somewhat modern now! All the info you all gave helped a lot with this decision, so Thank you all again.  I will update again later.  

Linda


ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 641
June 3, 2019 11:02 am  

Hi Linda,
Good luck with this week's medical events. Stress is the WORST thing to deal with, it leads to not sleeping and as you know everything is hard when you are deprived of sleep.
Good to hear you got out in your garden.
Thinking of you .. good luck.

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


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
June 9, 2019 9:39 pm  

Well...why should anything be easy at this point in the game? I was supposed to have been sedated for the ileoscope but that failed badly. With the drugs on board, the only result was that I felt trapped in my body and could not talk at all. Laying on my side the  doctor removed my brand new clean pouch rather roughly. He tore my skin in several places by doing so, and it has not yet healed. My last specialist has just gone thru the end of the pouch to do the scope never removing the pouch. I was totally muted and could not even say how much pain I was in during the scope. When he was done he asked what my other symptoms were and all I could say was "the pain, and it didn't work". Usually sedation works well,  but for some reason, my system did not metabolize the drug well at all this time. When I see him next, we will be discussing this matter. Because he removed my pouch, I had wide spread stuff, all over myself as my guts went into a action as soon as he was done. I am so not impressed with the new gastroguy at all. I will ask for another I think.  He was just too rough.  I am not sure I  can trust him at this point.

The echocardiogram was a breeze. Pretty sure results will be in with my internist this week.

My experience with the scope is not the usual result of them. I have an us usual gut that has dealt it's own blows over the years. Please do not think this is  going to happen to you. A rare disease is a bit of a game changer. My whole body simply put, is not working right at all during this time.

Linda


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
June 9, 2019 9:40 pm  

By the way.  I wrote this on my phone,  so cool.

Linda


ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 2 months ago
Posts: 67
June 10, 2019 6:32 am  

Hi Linda,

 

I'm horrified at the experience you had with the failed sedation. Seems like you can't catch a break! Now you know what that gastroenterologist is like when he thinks his patient is unaware of what is going on around her, and he doesn't deserve to be trusted with your care ever again.

 

I am at once gratified that you got your hands on that phone. From what I've read, it seems you got a good value for the money and your needs. Some people seem to expect too much from that particular model just because it's a Samsung and so gave it bad reviews and low ratings, but those I take with a whole box of salt. Now you get to experience how freeing it is to do what you did on a laptop without being tethered to anything so bulky.

 

Advising that what you're going through doesn't happen to everyone, that it's rare, is extraordinarily kind toward others who might worry that your experience is par for the course as an ostomate.

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


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
June 11, 2019 4:49 am  

Tony, thank you so much for what you said about the gastroguy. The pain in my abdomen is only now starting to ease up. Trust is a pretty big factor to me and I would never allow him do  scope on me again. I have had many, but none like this.  I have l logged on to the web site I can view my blood results on and there is certainly something strange going on with my system in more ways then one.  My internist is a wonderful young women and very smart. I will tell her first about what happened and see what she thinks and advises. I have to go for blood work now "every two weeks" for the next six months!  Today was my second round, and the results were already showing by 4 p.m. today.  I know better then to try and diagnose my situation, but what I saw sure warrants a fair deal of questions.  So many things can give someone odd results, right down to medications, taking vitamins you don't need,  and health. I do not allow myself to get alarmed over them and will see her next.

I have decided to give a run down on the changes leading up to my diagnoses.  I think  sharing information like this is needed under the circumstance. PLEASE, keep in mind that this is not for anyone to diagnose yourself by my experience.  If you have symptoms of concern, please see your doctor, keep a record of  your symptoms, changes, test results, and what your told by GP. Never be afraid to listen to your body or ask for a specialist opinion.

Since discovering this fine site, I have learned the meaning of Erics explosive word, "Extramanifestational".  I was previously diagnosed with, Autoimmune Disease (AD). Fibromyalgia  (FM) 18/18, Interstitial Cystitis of the bladder (IC) , Osteoarthritis (OA), and IBD.  You can read my bit of a story or anyones who has shared, if you wish by clicking on the name in the top left corner above in a forum they have replied in. I have also had heart surgery for a Catheter Ablation (CA) to my main pace maker (the SV Node (?)), the one God gives you, for long runs of  ongoing Supra Ventricular Tachycardia (SVT). Mitral Valve Prolapse (MVP), and a few other things adding up to 61 years challenges and life experience.  You may well stir into the pot, Antinuclear Antibodies (ANA) . I have had my share of Pylon Nephritis (PN), and many surgeries not all related to IBD. I have had many horrid bouts of  severe eye inflammations. I was recently diagnosed with a rare disease, Pseudo Obstructions. I am malnourished from malabsorption for the 2nd time in my life. You can read the 1 st entry in this forum to catch up if you wish. 

  Things started to go awry 3 years ago, when I noticed I had gained about 40 + lbs. in just over a month.  I was quickly diagnosed with Hypothyroidism.  On medication that issue, in a holding pattern, I have been unable to loose the weight for three years. Soon, other changes began taking place.  (I began keeping track of weight, fevers, foods, and bowel movements and where the changes were happening and changing every few days.) I was getting blisters on my feet in a pair of my most comfy shoes that I only had for a year. My socks would twist on my feet.  I began keeping track of everything.  I had to buy more underwear and socks that fit. My hair brush was always full of hair, my eyelashes, eyebrows would go thin, return some, and repeat.  My face looks somewhat gaunt. Bowel activity picked up again. I could see "fats" floating on the toilet water. Few clothes fit me anymore.  I had started running fevers. Then weight began dropping off as readily as it packed on. I am 5'6" and large framed.  My Dad always said I had been built like a brick s___ house. This meant I was strong and sturdy.  When this began, I weighed 185 lbs. and after the first assault of changes I managed to hold at my usual healthy weight of 140 for some time. It was hard to do. I kept track  for a while and then took it to the doctor. Changes were in the fit of my glasses, my ears sit closer to my head, and my rings would fall off.  My feet, ankles, knees and hips became very painful when I walk. It feels likeIhad mething like a sticker stuck to my feet where the toes meet the no longer padded bottoms. The stickers turned out to be the loose skin folding under the toes near the joints. My heels hurt all the time, and I began sleeping with a pillow under them to alleviate any pressure on the sides of my feet as well.  I began spontaneously vomiting several times a week, the nausea constant.  Heart palpitations, exhaustion, feeling hungry all the time it seemed, greater hair loss exposing a birthmark I did not know I had in my hair line. My vision became increasingly blurry easing off here and there. The changes too many, I stopped keeping track, it was getting me down. I had GP appointments every second week and a whole lot of blood work.  Then a referral to the internist, usually three hours away.  However she opened an office just over an hour away to give access to those of us at this end of the valley.  So thoughtful of her. She usually only sees patients in hospital. I should also tell you that I was actually born with little enamel on my teeth.  The first bought of malnutrition I lost most of the rest of my teeth and had to have the rest removed so I could eat. This is given me a further battle of mouth sores from ill fitting dentures. The easy solution is to get them lined, but it is a 300. $ bill for that too, so I have opted to line them with a product called "sea foam" it is actually working really well. They stay in and I can eat without issues, but with the further fat loss, I still battle sores. 

Nine plus months down the road, so much thinner, bowel pain had increased, fatigue set in worse then I have ever had. Food passes thru me within two to four hours of eating it.  I feel faint often on standing, dizzy spells are frequent, and I was told I was severely anemic. The break lines on my car had gone on my driveway, which is on a bit of a hill. My son had moved it to park it on the flat surface in front of our home.  I was then told by my GP not to drive anymore. I new I could not drive responsibly any ways and had taken a ride in for that apt. I was glad I had.  He explained my Iron, Linda, two, one, zero.  Point made, I handed the keys over to my son.  A week later, I had walked the block to my hairdresser and once home and putting the key in the house door, I heard neighbors yell, Noooooo, and heard an awful noise that changed things for me again.  Someone had hit my parked car.  It has since been written off and I have no idea when I will be able to afford another vehicle. I live on just over 1300. a month.  I will not qualify for  loan.  My stress level increased with a further diagnoses, and reactions to Iron Infusions I had to pay for with the bit of money from my car. I will not worry about this at this time.  I was able to gt my dog his shots with this money also, and his flea, tick and heart worm medicine.  The vet tells me it will cost 329. $ to find out if the crackle he heard in Romeos lung is Asthma or not.  Obviously, I can not do this.  He is 11 years old and the sweetest dog I have ever had.  I am babying the little guy and he seems to be getting a bit better each day. So far. Yet another curve ball. 

If you have read the above updates, I think we are here.  I am waiting on seeing the internist again and the gastroguy around the 20th.  My feet have been numb for some time and they burn frequently.  The exhaustion has become very obvious to those around me my son and his fiance, bring supper up to me when I can't make my own, but I mostly always manage it. With rest in between, I am managing to keep up my housework and laundry, and looking after Romy.  I have been blessed with helpful, and willing neighbors and friends for all rides I have needed have been met since the middle of May when I recognized my fatigue had grown concerning.  Each day has brought more fatigue in a greater sense of the matter. It is harder each day to get things done, and anything extra is almost too much to deal with.  

Joy...my son and his fiance are getting married in two weeks, if I have wear PJ's and go in a wheel chair, I will do that.  I make my meals sitting on a stool here and there thru the day.  I really am fine and this is another malfunction for now.  I will update when I know more. Thank you for reading and I have appreciated your comments and encouragement. My eyes have had all they can take for now, but I am glad I got this done.  By the grace of God, there go I.  

Linda

 

Linda


ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 2 months ago
Posts: 67
June 13, 2019 9:09 am  

Hi Linda,

 

You've made yourself oh so vulnerable by sharing about your suffering. It's courageous in the extreme, and I find it inspiring to read it knowing that the one who experiences this every day is still such a gentle optimist.

 

This is just a bunch of words. If words alone could give you relief, I'm sure I wouldn't be alone in writing them until you completely heal.

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


LK liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 1 year ago
Posts: 200
June 13, 2019 10:37 am  

Oh Linda, 

I am so sorry for all the stuff you've had to deal with. It makes anything I've had pale in comparison. 

I was thinking about your experience with the gastro guy, and I was wondering if any of the medications (or combination of them) that you are on may have interfered with the anesthesia. Maybe that is something to investigate with your doctor. Also, taking certain drugs for a while to combat a condition or disease may result in other conditions arising. Many years ago, when I was on Dilantin to control seizures, my doctor discovered that I had no white blood cell count - it was only at that time that I discovered that was one of the many side effects of that particular drug. 

Praying that you will find answers and cures  concerning your health.

Stella


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 448
June 13, 2019 8:36 pm  

Stella, thankyou. The medication he gave me for the sedation was a mix of Versed 5mg. and Fentanyl. The later and I get along well.  I had the less common side affects to the Versed. One thing I have said to my kids is that "pain is only temporary," truthfully I also added "and then you die."  But...that was before my Ileostomy. Lol. I was never one to complain much and I do not like to exaggerate.  When you think everyone goes thru this stuff or have been called a hypochondriac, you just learn to shut up about it. Maybe I should have complained louder as a kid/teen/ adult. I was only encouraged to see a doctor after I was married.  For sure, drugs and vitamins can mess up a persons body & blood results.  It is very important to always check with your GP before taking any vitamin or drug. I never took extra Iron but the storage of it in my liver sure turned me yellow & made me very ill.  The first thing my internist did was to take me off the rest of the drugs my doctor was already taking me off.  I have made it a practice to never take any vitamin or over the counter med. without checking with my doctor first. Years ago, after a diagnoses of  Hemochromatosis, I became really aware of what the body can mess up for you.  It is just not worth it.

Tony, thank you to you also.  Everyone is so kind here.  I appreciate your input so very much.  I do feel like I am ducking curve balls and making lemonade these days. There have been more results in and I heard from my Internist office this afternoon.  I see her on the 19th at the very end of her day. I appreciate all the prayers.  I will update then.  

Linda


IleosTony liked
ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 2 months ago
Posts: 67
June 14, 2019 8:26 am  

Franklly, Linda, I now understand why you remained conscious. I've been given that combination as well, and after having been on Dilaudid for what seemed like a lifetime, though it was really only weeks, versed and fentanyl might as well have been sugar water. All it did for me was make me not care as much as a non-drugged person would at having a drain inserted to suck out the foul witches' brew of purulence that was threatening to make liars of all my positive and hopeful medical providers. Why you didn't get propofol for such an invasive procedure is deeply mystifying to me. I hope your discussions about this fiasco bear fruit for any future procedures you might need.

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


LK liked
ReplyQuote
Page 2 / 2
Share:

  
Working

Please Login or Register