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Bowel Issues - Update


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#1 smac0719

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Posted 03 October 2009 - 10:16 AM

Almost 2 months ago I posted about some bowel issues I was having. I had severe abdominal cramping, constipation and elimination issues. As a result, I saw my primary who referred me to my Gastro and a Urologist because I also found out I've had blood in my urine for a few months and they just got concerned after the last urinalysis :blink:

I've had a pelvic MRI, which revealed a hemorrhagic cyst that can't be treated. For the blood, I've had an abdominal CT & IVP as well as a cystoscopy. The good news is I have no kidney or bladder infections, no stones or cysts. The not so good news is the Urologist has no idea where the blood is coming from :wacko:. Luckily, I can't "see" the blood in my urine. It is only detected in my samples. I've also had some pain in my back that reminds me of pain I've experienced with kidney infections, but I have no bacteria to indicate infection.

Through all of this the cramping had subsided until yesterday (after the cystoscopy). The constipation had gotten better, but has also gotten worse over the past week. I guess I'll head back to the Gastro to see what he wants to do about that now that everything else has been tested and ruled out.

I just don't understand how you can bleed and there's no rhyme or reason for it. Oh well, it could be worse and I am thankful that my kidneys are fine. I have an aunt with Lupus and it wreaked havoc on her kidneys so that she had to have a transplant due to failure.

The Urologist took a "clean" urine sample while performing the cystoscopy yesterday to check for cancer cells. He said he's not concerned, but wanted to be sure.

Has anyone else had any issues with unexplained blood in the urine?
I may have Scleroderma, but Scleroderma doesn't have me!

#2 summer

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Posted 03 October 2009 - 02:02 PM

Hi Smac, I'm sorry that you are still having problems, if it's not
one thing its another.

Regarding the blood in your urine, my rheumatologist called me a month ago,
to say that my urine sample showed that I had an infection, more
specific, a Urinary tract infection. She wanted me to go on a
course of antibiotics, I told her that I wasn't having any
symptoms of an infection, like burning or urgency. The test
was then repeated, and it still showed the infection, I refused
antibiotics because I couldn't see the point of taking them
without symptoms.

Whether this is Scleroderma related, I'm not sure, probably not,
but I will keep my eye on things.

Summer

#3 Sweet

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Posted 03 October 2009 - 02:03 PM

Hi,
Well now isn't that puzzling. I have not had this problem, but it sounds like the doctors are on top of it. I will be curious to find out what they find. Keep us posted won't you?

Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#4 enjoytheride

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Posted 03 October 2009 - 04:50 PM

I have had blood in my urine for years and years- mostly the doctors just said "hmmmm....." and let it drop. One doctor wanted it checked more carefully and I had a scopy thing- turned out the urethra lining is very thin and it simply leaked a little blood all the time. He said no big deal and all the other doctors I've seen since have gone back to the "hmmmm.....s."

I've had that result so long, I've ceased being concerned about it.

Not to say that's your issue, but just an example.

#5 smac0719

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Posted 04 October 2009 - 01:00 PM

Enjoytheride,

Glad to hear that it can just "happen" and it doesn't have to be anything serious. The Urologist seemed excited about the condition of my bladder. He insisted that I look at the monitor while he walked me through what he was looking at. I just looked so he could get the scope out of me and my bladder.

I'm due for blood work in a couple of weeks so if it doesn't reveal any bleeding issues and my Gastro doesn't think it's due to the Watermelon Stomach then I guess I will not worry about. Don't know what else to do. :(

......thanks for the info Sandra!
I may have Scleroderma, but Scleroderma doesn't have me!

#6 Shelley Ensz

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Posted 06 October 2009 - 05:35 AM

Hi Smac,

As I understand it (and keep in mind, I may be wrong, I often am!) what they need to do is make sure that the hematuria (blood in urine) is not caused by anything really serious, like cancer or an infection or kidney stones, and so forth.

If they don't identify any serious underlying cause, then you can jump for joy as you would also not need any treatment for it. That's because hematuria can also be caused by non-illness things, even such simple things as jogging or exercising. That is *not* to say that it is anything to be taken lightly or ignored when it is first detected. It only means that once all the evaluation is done and your medical team all agrees that everything really bad is ruled out, then you can breathe a huge sigh of relief and not have to worry about it anymore, unless it worsens or something else in that area acts up.

I have often had hematuria, due to interstitial cystitis (I.C.) but they can clearly see the effects of I.C. when doing a cytoscopy (plus there are definite symptoms to it as well, such as severe bladder spasms and bladder urgency a zillion times a day.)

I know Watermelon Stomach can cause blood in the stools. Has your g.i. doctor said, yet, whether or not it can cause it in the urine, too? I don't know enough biology (does a 10th grade long forgotten course count?) to figure that out, nor have I found the answer doing a brief internet search.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 smac0719

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Posted 06 October 2009 - 10:44 AM

Hello Shelley,

The CT, IVP and cystoscopy were all negative for the norm (stones, infections, etc). The Urologist took a urine sample while performing the cystoscopy to make sure there aren't any cancer cells. I will probably hear back from him this week. In the meantime I scheduled an appointment for the Gastro and will see him on the 27th.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 Shelley Ensz

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Posted 06 October 2009 - 10:48 AM

Hi Smac,

Well, so far, so good, eh? I sure do hope the cystoscopy sample turns out okay! I'm sure you will let us know, however it turns out.

You sound pretty calm so you must have some great approaches for reducing anxiety while awaiting test results. What are your secrets? We all could always use new coping ideas for times like that.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 smac0719

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Posted 06 October 2009 - 11:17 AM

Well Shelley, the saying "it is what it is" resonates with me in many ways. In my youth I was always told I should live life a day at a time and as if tomorrow wasn't promised. I found that hard to do pre-sclero. As we all know, Sclero has a way to slow you down whether or not you want to or not. Thus, I have finally learned to not only live day to day, but moment to moment as things can change with us Sclerodermians at a seconds notice.

Every time I have one of my pity parties, which are few and far in between, I remember those that are worse off than me. That is easily done by coming to this site and seeing what my Sclero friends and others go through. While, the poking, prodding, guessing and searching can be frustrating, I remind myself that there is probably someone else that wishes they had my problems because theirs are much worse.

I also seek out a good laugh from a friend, tv show or movie. Books take me to another place so I read a lot. Spending time with a loved one helps and listening to an oldie but goodie on the radio does the trick every time.

With that said, I can't stress myself wondering what this or any other condition stems from or "why me". I have good medical, family and friend support and I also have my faith so with all of that it's all good.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 March

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Posted 11 October 2009 - 03:37 AM

Hi Summer,

I am curious about your UTI's. Same thing with me - absolutely no symptoms of anything wrong but both the Rheumatologist and Internist (at different times within a few months)said I had a UTI. The second time I took the antibiotics. I have noticed for quite a while (maybe 9 months or so) that my urine has a very strong odor - not the usual odor. Have you noticed anything like that? Are UTI's common with scleroderma? As a rule I don't get UTI's - may have had 2 in my entire 60 years.

Thanks :rolleyes:


Mary Alice
"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine

#11 the only Y

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Posted 11 October 2009 - 07:15 AM

Hello!

I have had microscopic blood in my urine on/off for years with no reason. They also have done the testing that you mentioned and everything is normal. I know that it is frustrating. I now wonder if it could be related to Scleroderma??? Interesting thought and with the disease.......I wouldn't doubt it. Best Wishes to you.

Y
Searching for HOPE.......

#12 Sheryl

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Posted 11 October 2009 - 10:56 AM

Yes, you are the only Y.
I looked all over for the welcome I sent to you. Apparently I didn't send it and it went to cyber space, as many of our posts do when we get in a hurry or leave the area where we are typing and come back. Poof it is gone. OK maybe I am having a loss of brain activity more than I thought. Welcome aboard Y. I hope someone speaks up and is part of the study that you are in. I was going to leave this post and go check the name of the study It started with a D thats all I can remember. I can't, leave here or this post will be deleted. We will have to see if some of our computer wizards can fix that little problem with our new forum. Then we can come and go and finish when we get time. They add new things daily. It is getting better and better especially when some of us mess things they come to our rescue. Y do you want to tell us a little bit about this study and what it entails.
Strength and Warmth,
Sheryl

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#13 smac0719

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Posted 14 October 2009 - 01:20 PM

March,

It's interesting that you mention a strong oder with urine. I too have experienced that and when it occurs automatically think I haven't had enough water so I start drinking more. I wonder what causes that when there are no other "symptoms"?
I may have Scleroderma, but Scleroderma doesn't have me!

#14 March

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Posted 15 October 2009 - 03:05 PM

I know when urine is dark in color that usually means that your fluid intake is too low. My urine wasn't concentrated...I am starting to feel like a hypochondriac. :emoticon-bang-head:

I am soooooooooooo anxious to walk out of the Scleroderma clinic on Tuesday and know what is going on and what the plan of action will be.

My eyes are getting crossed from all the reading I've been doing since I am home on short term disability.


Mary Alice
"Right is right, even if no one is doing it. Wrong is wrong, even is everyone is doing it." - Augustine