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smac0719

Bowel Issues

23 posts in this topic

For a couple of years now I have had a lot of problems with constipation, painful movements with bleeding and hemorrhoids. I had a colonoscopy a year ago and had a couple of polyps removed. My gastro issues were pretty low on the list compared to other thing I've been seeking medical attention for so I am just re-establishing myself with my gastro.

 

Well the script flipped a couple of months ago and I started experiencing a lot of stomach cramping and now more often than not I have the feeling of not being quite "finished" when I go and the cramping is getting worse. I had been pretty "regular" but as of recent am not. I have also experienced a lot of gas over the past year, which comes and goes.

 

I have tried eliminating dairy, gassy foods, foods with skin and other things I found can be hard on people with stomach and bowel issues. I increased my fiber intake tremendously and I thought that helped with the cramping for a while, but it's back with a vengeance. It was so bad today I couldn't even go into the office. Also on Saturday I was out and about and felt the urge to "go". It took a minute to find a store with a public restroom and then it was in the very back of the store :blink: . It was like my bottom half had a mind of it's own and I barely made it! That was the worst feeling and it was scary.

 

Has anyone experienced this type of problem? Any suggestions for questions to ask or tests to ask for? I was able to get an appointment for Monday the 31st, but nothing sooner. I have cramped all day and this is a first. If it continues tomorrow I will get an appointment to see my primary and hopefully they can give me something for relief!


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

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Smac,

I'm so sorry you having to deal with these unpleasant problems. I can relate to the urge and fear of not making it in time. From what I could tell, I was dealing with Irritable Bowel Syndrome (IBS). My cramping and sudden urge to get to the bathroom usually came on about 15 minutes after eating. This lasted several months, then just stopped. I can't attribute the cause or the stopping to anything in particular. These symptoms could be caused by other things such as gluten intolerance or celiac disease.

 

Have you discussed your symptoms with your doctor? If not, please be sure to bring it up. Please drink plenty of fluids because the diarrhea can cause dehydration. Let us know how you are doing and what you find out, if you do find out. Good luck Darlin'.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

 

Thank you for the response. I have looked at IBS, IBD and some other gastro disorders. I do fit 3 out of the 4 symptoms of IBS so that is one of the things I have written down. I haven't experienced any diarrhea though, but I do drink a lot of water out of habit. I was not cramping when I woke up this morning, but as soon as I "went" the cramping started and hasn't stopped. I called my primary and got an appt for 3:15 this afternoon.


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

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Smac0719

 

I have IBS...and it can be nasty when it strikes. Sounds like you may end up with yet another colonoscopy (not a bad thing though, they get to see the inside so they can see what's really going on, as Janey says, other things could be attributing to your symptoms...even new prescription reactions?). High fibre is good in the meantime and you're already doing that....loads of water is also really good. Sure hope it subsides soon! Let us know what the doctor said? Take care.


Sending good wishes your way!

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I saw the nurse practitioner in my primary's office today. She is not sure what the problem is, but ran the gamut of what it could be (IBS, IBD, gastroparesis, diverticulitis, etc.) I was even running a low grade fever when I got there. When I showed her where my pain is, she wondered if something may be going on with my bladder or urinary tract as the pain is in my lower abdomen. She also questioned if it was female related, but I no longer have those female "parts" that would typically cause severe cramping.

 

Because I've had a pattern of blood in my urine as well, she wants me to see a Urologist. She ordered a pelvic ultrasound which I will have on Friday. She also mentioned that since sclero can cause inflamation all over, I may have some inflamation and an antibiotic may help me in the interim so she prescribed Cipro. I typically won't take an antibiotic all willy nilly, but I am so uncomfortable. :( I just want some relief from the cramping as it was just a strong today too. In the meantime, looks like I"ll be playing what I call the "Rule Out" game!

 

Thanks all!


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

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Hi, I'm sorry you're suffering from these awful problems! I've had 'toilet' troubles for over 6 years now. I have..well..the opposite of you! I know this sounds crude and I'm sorry but I suffer from 'explosive' episodes! I get barely any warning at all and have had quite a few extremely embarrassing moments! sometimes I'm afraid to go out at all as I never know when it's going to strike me! I get terrible pain too, sometimes I think it's worse than when I was in labor with my Children!

 

I've had many tests, colonoscopies, barium enama's, all kinds of x-rays. My Mother lost her life to bowel cancer so my gastro screens me regularily. Although I have been diagnosed with IBS my gastro is still investigating the cause of my problems.

 

My Rhuematologist thinks it the sclero causing GI problems as I also have chronic active gastritis, esophagitis, dismotility of the esophagus, constant nausea and vomiting as well as the toilet troubles!

 

I'm due to go have another endoscopy (for those of you who already know that, yes, I'm still waiting!!)

 

I do hope you can get to the bottom of your problem (scuse the pun! lol) It's a terrible situation to find yourself in, believe me, I know!

 

Best wishes!

 

ps: (sorry for the spelling mistakes :huh: )

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I also have bowel issues. I normally take a dose of Flagyl for a month and it gets better.


Kind regards,

 

Kamlesh

 

 

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Gastroparesis can cause all these problems. :(

Perhaps they should test for that if the other test doesn't show the problem.

Betty

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I have had terrible bowel issues now from the last 12 months. I have had a Colonoscopy, and do have mild diverticulitis, but my GI doctor seems to think it is slow motility. I don't have Gluten Intolerance or IBS, as I have been tested for this. I have gone from having regular bowel habits to passing up to 20 times a day, with terrible cramps and nausea. I have recently been prescribed Movicol to take a couple of times a week, but now am having cramps and nausea, all day, every day :( .

 

I can sympathise with you, the urgency to get to a toilet, especially when out is terrible. I now know where all the ladies rooms are if I go shopping.

 

Good luck

Summer

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Summer,

That sounds just like me. I have no notice. Added in to mine is sporadic constipation. Tested said a motility problem, gastroparaesis. There are guides to food to eat and avoid if you search the internet for gastroparaesis. That helps me especially the throwing up part. Sometimes I do have a queasy feeling and pink bismuth helps then. The meds the gastro gave me did not help.

Betty

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The nausea hasn't started yet, but I will search the internet for the foods to stay away from. Today was actually better. I had very mild cramping so I wonder if I do have some sort of infection/inflammation in my gut. I have had 2 doses of the antibiotic so far although the precautionary info scared me...."This medicine is associated with an increasd risk of tendon problems. These include swelling, inflammation and possible breakage of tendons." Breakage?? :blink: I felt so bad though I decided it was worth the risk. She also considered Flagyl too Kamlesh, but said it was mainly for the stomach/GI where Cipro was a little broader. Since we don't know what we're dealing with she decided to go broad. I have the u/s in the morning and it'll be another 10 days before I see the gastro. As long as the cramping stays at a minimum I can take the wait.


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

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I take Cipro when I need an antibiotic for anything (I'm allergic to penicillin). I, personally, have never had a problem/side effect from it...hope you feel better soon!


Sending good wishes your way!

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Snowbird,

 

Thank you for sharing as that's good to know. That makes me feel better about it. I had a pelvic ultrasound this morning, both external and internal. There was some discomfort as the tech moved around my bladder. I go an appointment with a Urolologist for the 11th of Sept. I guess it's a good thing my primary recommended it as over the past 48 hours urinary urgency has been added to the list of symptoms. I feel like such a mess right now.

 

On a good note, I finally found a Sclero support group in my city and will participate in my first meeting tomorrow. It will be good to finally meet another Sclerodermian face to face :)


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

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Hello Smac

 

I can confirm that there's nothing quite like seeing another sclerodermian in the flesh. To actually clap eyes on someone who has an understanding of how you feel and the challenges you face all day every day is just wonderful. I have the privilege of meeting with my fellow sclerodermians in my area every few months and when we are together we laugh and encourage each other. No doubt you will give encouragement as well as receive it at your meeting.

 

Sorry about the bladder frequency, I have interstitial cystitis and know all to well what it's like to have the frequency and urgency. I hope you get some answers in September and although it's some time away at least you are heading in the right direction now.

 

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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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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