smac0719

Bowel Issues

23 posts in this topic

Thanks Amanda. I just got back from the support meeting and actually saw someone there who I knew. It is such a small world! I also met 2 other Sclerodermians who see my Sclero specialist in Charleston. We had a nurse educator speak on PAH and the information was very informative. There's another support group in a neighboring city so I am going to join their meetings as well. It felt really good to be amongst others with Scleroderma.


I may have Scleroderma, but Scleroderma doesn't have me!

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I've just read this thread (been on holiday) and just wanted to say that I've been having urgency issues & leakage which I find hard to talk about & deal with! But plucked up courage to tell the doctor while going for a routine screening for bowel cancer (my father had it while in his forties) and he was lovely. He referred me to another specialist in another hospital & after many tests was told I have nerve damage which has weakened the sphincter muscles. So next Friday I go in for a temporary sacral nerve stimulation, this will be in place for 2 weeks & if it helps they will then fit a permanent one. I have been told they've had quite a bit of success with this procedure & it should cut down on the urgency & in time might improve the strength of the muscles. Trying not to build my hopes up too much but I would really like it to work for me.

 

I do get IBS at times and found peppermint tea helped with some of the bloating / wind problems. Thankfully I don't often get the IBS symptoms now but really feel for you & others who suffer from it, it can be so painful & is not easy to deal with.

 

Take Care

 

Jensue

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Hello Jensue

 

Bowel issues are the sort of thing people snigger at but as we know there's nothing remotely funny about living with it. Prior to scleroderma I was told I had IBS but looking back on it I think it was actually the beginning of scleroderma. The symptoms abated for some time and when they came back last year I cried. I did not want to return to the bloating and pain so bad you can't even move. I don't have urgency I have constipation and if I have to watch one more TV advert about it in which someone pops a pill and then goes on their merry way all smiley faced I'll scream!

 

Normality in this area is something the majority of the population take for granted, here on this forum we don't. I hope the operation is a success and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

I was having stomach issues too for a while and my doctor just keeps telling me it is IBS.

Anyway, I took just 20 mg of doxacycline Hyclate for 30 days, but I started feeling better the first

few days on it. All diahrea and pain went away.

Just something to look at. Tonya

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I've been on the Cipro for a week now and the cramping is still there but WAYYYYYY better than it was :) . Got the results of my u/s and I have a cyst on the 1 ovary I have left :angry: . I wanted it removed when I had my hyst, but the Dr didn't as he said I was too young to be on HRT. They now want me to have a pelvic MRI to take a closer look at the cyst. I've had them on and off for years, but have never needed an MRI. Oh well, here's another direction the ole' body is taking me in.


I may have Scleroderma, but Scleroderma doesn't have me!

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Oh dear! I do hope it all goes well for you! we never know where each path is going to lead us to do we!

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I have the exact same bowel issues. So painful! Doxycyclin doesn't do the trick for me but Flagyl gets it under control right away. My doctor told me it was bacteria overgrowth due to dysmotility.

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Well I had my appt. with the Gastro today. He is thinking that my issues may be from diverticulitis. However, he wants to see what the pelvic MRI shows. He is thinking with my hx of endometriosis along with the fibroids that excessive scar tissue may be wreaking havoc on my colon/bowel system. If the MRI doesn't show anything he will do a colonoscopy.

 

I am having a time with my primary's office and getting the authorization. It has been over a week since they told me I needed the MRI. I was on hold over 30 minutes on Friday trying to get a status. I sent them a stern email Friday and it resulted in a call on Saturday, but the referral coordinator was full of attitude and excuses ( "I was out a few days and I am the only one handling referrals, blah, blah, blah"). I also left a message last week Tuesday with the nurse practitioner I saw to see if she still wanted me to have the Urology consult now that they found the cyst and I haven't heard from her either. I really don't want to add another Dr to the already long list if I don't have too.


I may have Scleroderma, but Scleroderma doesn't have me!

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