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miocean

Diarrhea and Dehydration (again!)

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I've been suffering with ongoing diarrhea since my hospitalization in May. I have lost 25 pounds that  I fortunately had to lose (and I will probably find them again!) I look great but feel very weak. I had blood work done last week and I am dehydrated again, with my creatine rising. It is now 2.14 so tomorrow my nephrologist is going to call and either tell me to go to the infusion center of to the hospital to be admitted for a short term stay. It looks like one of the anti-rejection medications for my kidney transplant might be the culprit so I will probably switch from mycophenolic acid to imuran. I am a little nervous about the change but cannot live my life with the incontinence I have been going through. I don't want to eat anything because I am not sure how it will affect me. Sometimes I vomit as well. I know some of this can be attributed to damage to my GI tract from scleroderma but am hopeful that a change in medication will cause improvement.

 

miocean

 

 


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Hi Miocean,

 

Sorry to hear that you're still suffering with diarrhea and dehydration again.

 

I've been taking Azathioprine (the generic form of Imuran) for the last six years, with little or no side effects (I wish the same could be said for the Prednisolone I take! :wink: )  I do hope that this medication will work equally well for you.

 

I could do with losing 25 pounds!! :wink:

 

Best wishes,


Jo Frowde

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Jo, it is reassuring to hear you've had no problems on the drug. I am at the doctor right now getting the IV fluids. can't wait to feel better. I hope the different medicine will be life changing as far as dealing with the diarrhea.


ISN Artist

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Oh Miocean,

 

I'm so very sorry to hear about this. It must be just terrible. I hope the possible med change will help. I have IBS and I know just how much that controls my life, so I get a little how you are feeling. Hope the doctors can get it under control. 


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Oh my goodness.  I'm sorry to hear this. How are things working out?  Have you changed medications or have they found a good treatment yet?

 

There's an interesting thing with those of us who have had severe g.i. problems. And that is, we know how to scope out every bathroom within a ten mile radius, and mentally score them by how well equipped they are. When things are acting up, we consider closeness to the restroom to be a prime consideration for our easy chair, the side of the bed we'll fight for, and the most ideal table in the restaurant. We can develop a hobby of mentally drawing the figures that we see in the tile at our feet as we get to stare at it so glumly, for so long. The only sales we care about anymore are those for toilet paper. At gift-giving time, we hope someone will meet our deepest secret craving, which is for a soft cushioned toilet seat.

 

I hope things are a bit better for you today. Please keep us posted on your progress.

 

:hug-group:


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.

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Shelley,

You always make me laugh! You hit the nail on the head about bathrooms! Good reading material is a must and if not available the labels on anything handy will suffice.

 

I had two IV fluid infusions at my doctor's office this week and today started the Azasan (Imuran). It's too early to tell anything but I am keeping my fingers crossed. I have to go for blood work next week and then every two weeks for 6 weeks. My prograf levels are also high due to the dehydration so I have been very shaky and have headaches. If things don't calm down I will be referred back to my transplant center where "hopefully" they will have a GI doctor who is familiar with issues like this.

 

I have a prescription for physical therapy and start next week. I am so weak and fatigued. It seems like every year I am getting weaker and weaker. Last year we went on a vacation to Maine I had been dreaming of for years and did a hike that I could barely finish. This year I wouldn't even attempt it.

 

However, one thing I have learned about scleroderma over the years is that things change. I never really understood what a "flare" was, but I feel I am just having a flare. It is not fun and somewhat scary because it reminds me so much of how I felt when all of this so suddenly began for me. Then I think of how I miraculously felt so much better after the kidney transplant. I am looking a this as a bump in the road, one that is not insurmountable. This too shall pass.

 

miocean


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Hello Miocean

 

I am sorry that you've been so unwell. That you have already determined this period will end in favour of better things works in your favour greatly.

 

I had a two year flare that ended the beginning of this year. Unfortunately somethings have very quickly deteriorated again but what are you gonna do?! Not a lot really!

 

Please let us know how any medication changes go and having had interstitial cystitis, you have my sympathy. I know where every toilet in my area is! This is on a need to know basis only!

 

Take care and don't lose sight of the improvement that's just around the corner.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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International Scleroderma Network (ISN)

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Even with the IV fluids my creatine is climbing so on Wednesday I am having a biopsy of my kidney transplant. I had one a year after transplant when my creatine hit 1.6 but it is now at 2.4. Although the doctor does not think it is rejection, better safe than sorry. No wonder I've been so exhausted.

 

Interestingly, when I got out of the hospital my creatine was 1.3, a good number for me because I usually run 1.4-1.6. So I began to think, what am I doing differently? Aha! My GI doctor started me on cholestryamine to control the diarrhea. So I googled whether it can raise creatine levels and in a very small percentage of people, it does. Tomorrow I will call my nephrologist and pass that information on. I know he will still want to go ahead with the biopsy, but since I had one before I am not freaking out.

 

Too many variables for me to figure out but I was the one to diagnose my scleroderma...

 

miocean

 

 


ISN Artist

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Hi Miocean,

 

I am glad that you have most likely pinpointed the problem.  I'll keep my fingers and toes crossed in hopes that is exactly what it is!

 

:hug-group:

 

P.S. I told a fibber about crossing my toes. They are too short to cross!  And crossing my fingers makes it extremely hard to type. How about I just send a lot of good thoughts your way, will that suffice?


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.

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Hi Miocean,

 

I'm also thinking of you and sending good wishes and thoughts to you for your biopsy.

 

(I' d cross my fingers and toes for you as well, but unfortunately I'm sporting a broken wrist at the moment, so crossing my fingers is a bit difficult ! :wink: )

 

:hug-group:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

How did your kidney biopsy go today?  Do you have any idea when the results will be back?

 

I hope it all went well and that the results are helpful.

 

:hug-group:


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.

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Everything with the biopsy went very smoothly. The out patient unit was practically empty so it was quiet and calm. The nurses were very attentive. The biopsy process has changed since the one I had four years ago. It was guided via a CT scan. The team worked well together and the radiologist explained everything clearly. They gave me light sedation and then lidocaine locally before taking the tissue samples. Back in recovery I had to lay still for 2 hours where the first time I had to lay still overnight. I was home by late afternoon. I have no blood at the site or in the urine so all is good.

 

My doctor said they might have the results by Friday but the radiologist said next week. I told my doctor about my concern that it could be the medication but he doesn't think that is causing it.

We'll just have to wait for the results.

 

miocean


ISN Artist

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Hi Miocean,

 

I'm so pleased to hear that everything went smoothly. It does sound as if they've streamlined the whole process a bit more now, so you're not having to stay in the hospital for so long, which must be a great improvement.

 

If I could cross my fingers for good results for you, I would! :wink:

 

:hug-group:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

I'm glad your kidney biopsy went so smoothly!  It sounds like they really had their act together around there. I hope they nail down the cause soon.

 

:hug-group:


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.

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