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summer

Update on bowel problems!

13 posts in this topic

I finally made it down to the hospital to see my Gastro doctor. My bowels and digestive areas, have been terrible for the last 2 years. Numerous times in the toilet, every few days, with nausea, vomiting, cramps, constipation with diarrhea, and also hemorrhoids. I have experimenting with my diet, low fat, high fat, low fibre, high fibre, and also many other diets. I have had Colonoscopy/gastroscopy, last year, all was normal, biopsies and Celiac testing, all fine. So I told my gastro, I had had enough, I have no quality of life left. When I go out, I'm always searching for the toilets, sometimes am stuck in a public toilet for 2 hours, at a time, as I can't drive home, because of the urgency to go every couple of minutes. Enough is enough, I want something done regarding surgery to my bowels, he has referred me onto a surgeon. Then I can discuss with my surgeon different options, regarding Ileostomy and other things.

 

As much as I am sad, that things have come to this, I am also relieved. Hopefully I will be able to see the light at the end of the tunnel.

 

I would be interested in all those that have had surgery on the bowels,and there opinions please.

 

I was diagnosed in 2007 with Limited/Crest Scleroderma, and have the RE, in the crest, and have Fibromyalgia, Gerd, Tachycardia and other things.

 

Many thanks

 

Summer

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Hi Summer

 

Poor you, I'm so sorry to hear about all the problems you're having with your digestive tract and bowels. I think that's one of the worst Sclero symptoms to put up with, as it does mean that you lose your confidence and become afraid to go anywhere without first checking out the location of the toilets! :unsure:

 

Thankfully, I don't have the gut involvement yet, although do occasionally suffer with hemorrhoids (as does about 90% of the population! ;) :lol: ) and that's unpleasant enough without the other gastric problems you have.

 

However, it is good news that you have now been referred to a surgeon, which hopefully will make a sustantial difference to the quality of your life once the surgery is completed. At least now you will be able to feel that something is being done.

 

Here's a :emoticon-hug: to give you a little bit of comfort!


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 Summer, sorry to hear you've suffered so much with this for so long, hopefully you will have some good options through the surgeon. My mom had a colostomy for years (unrelated to sclero - she had an abscess because of diverticulitis which destroyed some of her colon) but she always said it was most convenient because she never had to use a public toilet! The daily care became very routine and she never had any problems with the stoma.

 

I have GI problems too, with bowel urgency, and never travel in the car without a pad on the seat and an extra change of clothes just in case, but am fortunate that it only happens a couple times a month or so. How long do you have to wait to see the surgeon?

 

Wishing you well :emoticon-hug:

red

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Hi Summer,

 

Boy some days I feel like that too. I have all the restrooms in my town mapped out. The worst thing was when I was still working at the bank, in the mezzanine of a funky grocery store in a busy uptown location, our only restroom was also the public restroom in the hall! At least there was a mens and a womens and I never thought twice about using the mens room! Still, sometimes I had to wait. When I was not waiting, someone was waiting on me. It wasn't fun to come out of the mens room to a line of impatient men! One day though, a man came out of the women's room and I smiled. He says, "Hey, any port in a storm" cute, as we are a seaport town. I would always return to a line at my teller station and/or dirty looks from my customers and co workers. One of the big reasons I am no longer working.

 

My heart goes out to you and I sure hope you find a solution that fits you very soon!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Summer,

 

So sorry about your bowel problems. I too have suffered with them since I was in elementary school. Yes, that young. But got much worse as I got older. It was sooooooo embarassing when I was in high school. I was even in the bathroom once for a whole class period. As an adult, I had different jobs, and always was in the bathroom, with any type of stress, or I'd eat the wrong thing, I'd be in the toilet. One job, I worked for a portrait studio, and the bathroom was right next door, and in the middle of a shoot I had to go. How embarassing. I told them I wasn't sick, and I had ulcerative colitis, which I did. I ended up quiting my job for other reasons but, you also can't be a receptionist that answers phones if you're in the toilet.

 

Mine has cleared up a lot with rheumatoid arthritis medication. I was on Humeria for about a year and it totally calmed it down . Even now that I'm off of Humeria I have episodes 1 or 2 times a month. It is very hard to go out to eat or go shopping when you always have to goooooo. I hate to see you get a surgical answer to the problem, but you have to do what's best for you. I took pills for years, and then the Humeria. I don't know if it'd work for you? Best wishes, and keep us posted!! HUGS

 

Susieq

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Awww Summer, I'm sorry. I can certainly relate to the bowel issues however. Mine are not as bad as what you are describing, but it seems to be getting worse. Surgery might not be a bad alternative. Hang in there. :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Summer,

 

So sorry to hear about all the problems you are having, I guess when you have got to the point where you are considering any sort of surgery, it is a measure of just how bad you feel and how much the problems you are suffering from are affecting your life and confidence. I hope you don't have to wait too long before you get to see the surgeon and I also hope some suitable options are offered to you.

 

Take care, chin up.

 

Sandy B

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Don't rush to the gastroenterologist to solve all the symptoms of systemic sceloderma. They are always learning from those of us who have the disorder. My last investigation of the oesophagus required my permission for it be filmed so that medical students could see a 'fibrotic oesophagus'. Good for them...they aren't likely to see another one in the course of their medical careers.

 

It's very important that those of us who experience this disorder speak out-LOUDLY- about how it affects us. Can we stop being polite and be more pro-active about the level of disability, for example, that this disorder can cause?

 

I am so sympathetic to your bowel disorder. I have wonderful doctors but none of them understands the need for constant, daily, moment to moment, monitoring of how the digestive system functions for those of us suffering with this aspect of the disorder. The extent to which it controls us from the point at which we consider what might be good for breakfast, and throughout the day as we debate what we can and cannot eat, until the time we decide we can sleep well with our daily intake.

 

For some time I've accepted that I can never again eat a good steak - my oesphagus just blocks it... but so what? If I can eat variations of veggies, better for me anyway, what's a steak?

 

Stay well, as best you can, and be alert to the signals your body is sending you. Trust yourself!

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Hi Julien

 

Welcome to these friendly and informative forums.

 

I do agee that we should be proactive with the treatment we receive for this complex and bizarre disease.

 

Since being diagnosed very quickly with Sclero, I was fortunate to have access to the best expertise possible. However I do like to know exactly the nature of the treatment I'm receiving and how it is going to affect me. ( I think it's probably because I'm a bit of a control freak and I love to tell my doctors how to do their job! ;) )

 

I'm looking forward to reading your future posts and getting to know you. :)


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 Summer

 

I am also sorry to hear you having such difficulties. I can't add too much more but I do wish you good luck with your appointment. It's good to investigate every option available...just be sure to take your time in selecting what's best for you and then you'll know that you made the best decision.


Sending good wishes your way!

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Hello Julien

 

Welcome to the forums! You're absolutely right, it's important that we are vocal about how scleroderma affects us with our doctors and the world around us. That's why these forums are so great and we're so glad you've joined us.

 

Take care and keep posting.


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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Thanking you all for your advice and comments. I am still awaiting to receive an appointment, to see a surgeon. I will update you when I have seen the surgeon, about possible surgery. :thank-you:

 

Best wishes

 

Summer

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