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Robert
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March 5, 2018 11:30 am  

Sasquatch good luck with the med change hopefully that does it .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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VeganOstomy
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March 5, 2018 3:13 pm  
Posted by: Sasquatch

We may have found the problem, at least I hope so.  My doctor has changed my diabetic medication. Basically, the one I was on can cause you to dehydrate because it eliminates sugar through urination. I go back for more blood work in a month.

Good luck! Meds like that can certainly be a cause for these problems, so I hope that adjusting it helps!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sasquatch
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April 5, 2018 8:20 am  

Well, the change in diabetic medication didn't help, and I know I've been getting enough fluids.  I'm now being referred to a Hematologist, just waiting for the call from them to set-up the appointment.  All of the changes in my blood counts have come post surgery, I really think something to do with the loss of my colon is playing a part.  Whatever is going on I need to get it under control, my energy levels are really low.  It's all I can do to get through a full week of work.

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


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VeganOstomy
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April 5, 2018 9:32 am  
Posted by: Sasquatch

Well, the change in diabetic medication didn't help, and I know I've been getting enough fluids.  I'm now being referred to a Hematologist, just waiting for the call from them to set-up the appointment. 

Damn. At least you can eliminate that .

Good luck with the Hematologist appointment. I hope you find answers soon! I know how debilitating fatigue can be.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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April 5, 2018 10:00 am  

Hi Conor, I can image your blood sugar is through the roof, my wife is a type 1 diabetic and I meantioned your story to her, her thoughts where with the loss of the colon its like becoming a diabetic all over again. She had a kidney transplant over a year ago and since that she has been struggling to get the blood sugar under control. she has been using device to check the blood sugar which is like a button on her arm. the reading can be scanned without the need to prick the finger. Its called a Freestyle Liber, its not 100% accurate but gives an indication of the blood going up or down. then she will do the prick on the finger! its been a big help.

ileostomy 31st August 1994 for Crohns


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Sasquatch
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June 11, 2018 8:22 am  

Well, still no answers as to why my hemoglobin is running high.  All the blood tests the hematologist ran came back normal.  He says I'm like the guy who sets off the metal detector at the airport for no known reason.  Next guess is low testosterone, which he had blood drawn for on Friday.  Maybe that's the answer, after all, I was on loads of Prednisone for the better part of 2016.  

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


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Sasquatch
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June 14, 2018 6:54 am  

It appears that low-t is the winner, now to figure out how to boost it.  I'd rather try to do this naturally if possible.  I think the best start is to try getting into a good workout routine, besides the low-t, it should improve a lot of things for me health wise.

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


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VeganOstomy
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June 15, 2018 1:10 pm  
Posted by: Sasquatch

It appears that low-t is the winner, now to figure out how to boost it.  I'd rather try to do this naturally if possible.  I think the best start is to try getting into a good workout routine, besides the low-t, it should improve a lot of things for me health wise.

I'm glad they found the culprit!!! 

Are there any specialists who can give you direction? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Gimparoo
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June 17, 2018 1:32 pm  

I have Polycythemia...  at first they thought it was due to low T (testosterone), but I was already on a low T treatment when the Polycythemia started giving signs, symptoms. I was feeling “full”, the eebeejeebeez.. tunnel vision effects, a low grade headache for weeks at a time. Insomnia, itchy skin when showering... and other little things. Finally had some blood work done and my PCP said my red blood count was sky high, and iron was low, but not real low, and my oxygen levels were off when blood pressure was taken, 140/80 and 94% oxygen 40 bpm. When normal for me for years had been 110/70 99% oxygen, 55 bpm heart rate.  So, off to a Hematologist I go...  he tells me I have Polycythemia. First thing he did was do a phlebotomy and drained 750ml of blood. Strangest feeling as the blood was draining, my headache went away, my eyes cleared up, my oxygen levels went somewhat back up, most of my symptoms went away! So, we did this monthly (500ml) till iron levels became low, we stretched it out to 5 weeks, then 6 weeks... but then I started having symptoms come back at 2 weeks post, and had to return to every 29 days, right now my magic number, but we are still concerned of the iron levels. It’s a catch-22.. too low we start iron fusions, too high and my blood levels get to high. The blood being produced is deformed and does not carry oxygen due to the low iron levels, a very fine balance that we still have to play with in phlebotomy timing on a quarterly basis.  Once you start iron fusions, in my case, you never stop... so I would get an infusion at 2 weeks after a phlebotomy, then in 2 more weeks repeat the phlebotomy, and this would last the rest of my life!  So, this will eventually happen, but as long as I eat very good, drink enough fluids, I’ll keep this cycle off till the inevitable..           it had nothing to do with why I had a Colostomy done, nor affected it in any way, but that’s where I’m at in the Polycythemia end of things.   We did do a DNA test to see if this was genetic, as there are several factors that can cause this genetically, and yes I have the Myocytosis gene that can be the reason for the Polycythemia. The fact that I was taking a form of testosterone to keep my level normal could have triggered it, but no one knows for sure. No one in my family had it, diagnosed, but I can think of one family member that had ailments similar to mine that make me believe he may had had it and did not know what it was, other than complications to some other illnesses he endured in life. There you have it.....   Polycythemia at its finest state!   In Texas we have to throw away the 500 ml they drain every month, what a waste, it could be used in so many ways, transfusions, plasma, research, etc. So that makes me mad, watching the nurse throw my blood in the trash can!  I’m O- too!    ....all that hard work!! LOL

Best to all,

Mark

 

T11/12 Paraplegic / Colostomate


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Sasquatch
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June 18, 2018 6:58 am  

I'll see what they recommend at my next appointment in a few weeks, I'm guessing the hematologist will send me to a specialist for this.  He's already sent me to a sleep specialist to rule out sleep apnea, which I've done.  The sleep specialist want to do an in lab sleep study as well, but I'm not sure I need to pursue sleep issues any farther.  I don't think the hematologist will give me phlebotomy unless my RBC's go higher, but low T treatment could drive them up. 

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


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Marcie
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June 18, 2018 10:51 am  

Hi Mark and sasquach----------, I do see a few people with this blood ordeal.  They get some blood taken out, once a month or some every 2 months.  Depends.  They said they don't feel anything of a drop after this. but their wives are ready with fluids and right there with them.. Doesn't take a long time.  Mostly the use plastic bags for this.  But as of the shortages of the plastic drip bags on shortage, they used the bottles. And, one wife was so eager to help her husband- (for no reason-not a big deal-as long as they keep their Dr. and blood work up right?) Well, she knocked over the bottle and it broke.   boy did he yell at her!!  I felt bad for her, but she was in the way--got to let the nurses do their work ..  so now when they see them coming, the plastic comes out.. :-) she felt bad...…. 

Good luck sasqutsh-- (sas)  sounds like your going in the right direction.. I went for a sleep study in Fl.  THE building was located right by the railroads.. every 15 minutes a train went by 24-7 !  Needless to say, that test did not work out well. Just needed to stop smoking. (and a arched pillow for my head and neck..  worked..)I did for 15 years. then started again. now I stopped again for a few months and plan to stay that way. too hard to deal with quiting.. 

 

 

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


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Sasquatch
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June 18, 2018 11:46 am  

Marcie, I know what you mean about the railroad tracks, I've lived within a 1/8 mile of them for my entire life.  I'm to the point the sound of the trains doesn't even register to me, unless they stop or hit something.  

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


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Marcie
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June 18, 2018 12:17 pm  

Ya, I just could not figure out why they put a sleep disorder medical center that u have to spend the night with R.R. track-I never slept a wink. :-(  I did it my way with the pillow and quit smoking. That did the trick.. And being over tired or stress does not help..  I just figured out what Marcie's brain was up to (teenagers) and fixed it the best I could. Then everything fell into place.  Dr.'s don't know everything.. And my blood work as pre-diabetic?  Not going to worry about it..  the more stress?  the higher the counts of many blood works get..  They keep lowering the bar every 5 years.. I will watch the sugars etc.  But I don't really go that route or the carbs either.  At my age??  seriously? and what I have been through? (I will have to check your "member" and read what u wrote about what u went through next)--so I can better understand YOU  my friend.. All I can say is- go slow-relax, enjoy the nice weather, and really try to understand your Dr. and what he is really saying.. Remember, we are text book-- = we r not the same...…. they just go by the numbers.  Keep taking the blood work and you and Dr. will figure out what is really going on..  Give yourself a break of non-worry's.  But the depositing of your blood  might be helpful and see how you do and what your blood work says.  Better than medciation's to start off with..  Dr. mentioned this, see where u r now and if Dr. thinks it may show something else?  go for it.. Now start writing your own text book. :-)

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


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LK
 LK
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June 18, 2018 9:19 pm  

Hi!  I feel very behind the times here.  I have something called Anti-nuclear Antibodies and Anti-phosphilipid antibodies.  Causes me to throw little clots that feel like ants are crawling all over me.  I allowed my pharmacist to influence me one day when I went in to buy my regular strength aspirin I have to take even before surgery or I get in trouble with anesthesiologists.  I found out the problem of ants by error,  when I was diagnosed with Hemochromatosis.  I really high Iron. I had the feeling of flu symptoms for months and months.  Blood letting was the answer there.  Since there have been 11 in my family diagnosed also.  My cousin says I saved his life.  These conversations are important.  

I  drink  up to 4 liters of water a day and then also 3-4 large glasses of milk.  When they diagnosed the type 2 diabetes...I just rolled my eyes!  They thought it may be the milk of all things.  But still no after abstaining for a few weeks.  V8 juice, original, and I are great friends and I too now flavor my water periodically.  Grapefruit is great for this.  I will seek out the V8 Greens.   Spinach gives me horrid gas so I avoid it, but I like spinach...not the gas part. maybe Greens will be the answer.  I also eat potato chips...love dill pickle.  This happens to absorb just enough without causing  blockages and I can still drink lots of water.  I am presently dealing with malabsorption.  Has anyone else been there?  

Hope all is figured out.

Linda

 

 

Linda


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Marcie
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June 19, 2018 9:31 am  

Hi Linda, I am malabsorption.  Even tho I have my whole small bowel, I have short bowel"  I am on injections daily of Gattex.  Google this.   Also, Go to "Marcie" at members and I have a few logs there of  my fears, and what I found out, and what I know personally.  This has helped many- call it a wonder drug. Eric and some do not like this on the blog- Not a stoma-so if any questions, go to lounge and we can be busy there of P.M. 

so far I am doing better absorbing. But on such a low dose because of my kidneys.. But they are performing even better now also.  Thanks for your input with your blood issues.  Keep in the back of my mind.  Interesting...…… 

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


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Marcie
(@shulmjs)
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June 20, 2018 3:03 pm  

Linda, what r u doing about your diabetic 2 ??  or r u just currently trying to focus on malabsorbsorption? U have a lot going on with your blood huh? Best. M.

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


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LK
 LK
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July 1, 2018 11:51 pm  

Hi Kirby, I am a tad late here, but now that I have a computer again...I had some trouble with a tight output for a few months, gave me leaks most always at night.  One thing I do  have on hand is a solution  I make that I put in my pouch, about 2 Tbsp. not a gel, it is so much easier to work it a bit and move it up and then down  the bag.  It also saved a lot of hand washing as I could do it from the outside of my clothes.  I get eczema on my hands from so much hand washing.  I picked up on my fluids also, about four litres a day more when it is hot with the thicker output also. ( We have been using the air conditioner since May this year. )But it did make a difference.  I found the recipe on the computer under home made deodorant for pouches.  I also drink four glasses of milk a day, large ones, and V8 juice is wonderful.  I have not seen the Green version yet. I will be asking about it next time I am in the grocery store. Have things changed for you and if so, what changed?  I also use, just when I am out in public, due to cost, the lubricating deodorant,  you have to rub the sides of the pouch together to spread it around, try and avoid the filter if you use one. I hope things are better for you.

Linda

 

Linda


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Sasquatch
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August 10, 2018 9:15 am  

Well, my doctor doesn't like the idea of testosterone treatment with my hemoglobin levels as high as they are.  The hematologist said in my last visit with him, he can't seem to find the reason for them to be so high. I'm off to another appointment whit the hematologist this afternoon, hopefully I can get some direction. I'd really like to get myself in as good of shape as I can medically before I go in for surgery this fall. Wish me luck!   

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


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Marcie
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August 10, 2018 9:53 am  

You have my warmest of luck always buddy !!  Maybe it is just you???  Some of us are just different-- I know I am and drive the doctors crazy..   So maybe you blood level is high in the first place?? --Something is shaking hands in there.. But you will be healthy.  

I know when I feel GREAT my blood work is off a bit.. So be it.  :-) 

Best Always.. Marcie. 

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


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Sasquatch
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October 8, 2018 7:52 am  

I've finally gotten to the bottom of the blood issues, saw an Endocrinologist, and was re-tested for testosterone deficiency.  It turns out the T-levels are on the low side, but in range.  I recently decided to go off of my multivitamin.  Turns out, my iron levels were, of all things too high.  That brought my hemoglobin right back into range.  I'm now curious what my blood glucose levels will do, there is a chance they will level out as well.  I've finally gotten an answer that I am confident in, let's just hope that the levels stay where they are. 

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


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