Kamlesh

Scleroderma and Small Intestine Blockage

8 posts in this topic

All,

I have developed small intestine blockage recently, and it causes intense pain when it occurs. I had to go to ER once.  

 

According to my GI doctor, scleroderma produces scar tissues in digestive system  it blocks small intestine and there is no cure for it. His advice was to bear out the pain and go to ER as a last resort. Now, it has been occurring almost every week. I take all precautions such as eat lite and easily digestible meals, avoid high protein, etc.

 

This has been causing weight loss even if, I have no intention to lose weight any more.

 

Any suggestions?

Thank you

Kamlesh


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Hi Kamlesh,

 

I'm so sorry to hear that you're experiencing problems due to a blockage in your gut; it must be so painful and debilitating. Thankfully, I haven't suffered with this complication; however, I've included a link to our medical page on Gastrointestinal Involvement and I've also found a thread by Judy regarding a bowel obstruction caused by adhesions which I hope you'll find helpful. I expect Judy will be along to give you some first hand advice and it's quite possible that we have other members who will be able to help you as well.

 

I do hope that the pain will improve for you very soon.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Maybe this post should be rated X to warn those with a delicate disposition to read on with care!!

 

Hi Kamlesh,

 

Have been thinking about you since I first saw your post yesterday, and I can sympathise from the bottom of my heart.   It is a horrible thing to have happen.  

 

In my case it was a large bowel obstruction, and in fact, very easy to remedy once they had unzipped me down the middle :rolleyes: , or so the surgeon said.   I realised after recovery that the aches,  pains and  diarrhoea episodes that I had been suffering from over the previous months were being caused by these adhesions.  Once I felt better I noticed they had all gone away and have stayed away so far.

 

At the time, the pain was not quite as bad as the fact that my stomach started to fill up and swell because everything was backing up.  The Hose in my Nose was a huge relief because then my stomach could be emptied by attaching a 'turkey baster' sized syringe to the outlet and sucking the stomach contents out again.   I was not taking anything in after the first few hours of course but there is always what it left there from yesterday and the production of stomach fluids does not stop. 

 

My general practitioner explained to me that those adhesions, called band adhesions, were like a spider web of rubberbands.  As the bowel moved around, as it does although we don't notice it, it would get caught up then release itself.   This time it got well and truly caught and couldn't get out!!   Just like a moth caught in a web.   Hope nobody reading this is a surgeon or I will get my $5 mail order First Aid Certificate revoked before it has even arrived.

 

Her advice to me was to stop eating solid food :emoticon-dont-know: (hard even for a sparrow like me) if I ever felt the same thing happening again.

 

Not that I think this is anything like what you are putting up with.   The small bowel is a much finer tube than the large bowel and I understand just what you are saying you have been told about scar tissue.  As well, you seem to be taking the same approach I was advised to use.  I know how awful it is not to be able to eat something yummy and to have people noticing that you are wasting away.

 

I presume that unless the blockage is total, fluids can get past and I imagine that what I would do would be to get onto the High Nutrient drinks which are available.

Actually the more I think about your situation, the more the mind boggles, and I have to say that I do feel so sorry that you have to put up with this.   I hope medical science moves on really fast and provides you with a solution as soon as possible.

 

Lots of love and hugs :emoticon-hug: :emoticon-hug: :emoticon-hug:

Judyt

Share this post


Link to post
Share on other sites

Hello All,

Thank you and appreciate your kind words.

Managing Intestinal blockage, Scleroderma, and Neuropathy  pain issues make it a balancing act. What, when, and how much to eat  to eat is an exercise on daily basis.

Whatever life offers, take it happily and day at a time.

Thanks again.

 

Kamlesh


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Hi Kamlesh,

 

I just want you to know that my thoughts are with you.  I know what a balancing act it can all be, sometimes with no happy medium no matter which way you turn.  I am including a link about Bowel Obstruction for those who are not familiar with it. As mentioned in this thread before, our Scleroderma Bowel Involvement section on our main site.

 

Of course, make a mental note to never just put up with severe bowel pain, as an untreated obstruction can be fatal. We'd really like you to remain with us for a nice, long time. 

 

I'm not sure if there are any medications to treat such pain though, at least ones that wouldn't also slow down or stop peristalsis or bowel contractions, which we actually really need in such a situation.  Many pain medications can either cause or worsen bowel problems so you may be caught in quite a catch-22.  And, this is pain that you want to be aware of so you can respond appropriately in a medical emergency. 

 

Anyway, I hope you are able to find a sustainable balance between the symptoms and the treatments.  I know that it will not be easy as there are so many complicating factors.

 

:emoticons-group-hug:


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.

Share this post


Link to post
Share on other sites

Shelley,

 

Thank you for your response as well as kind words. I am not sure, is there a treatment for small bowel obstructions other than surgery to remove that part of intestine. But, according to my GI doctor, scleroderma  is producing scar tissues and it will block intestine again, so surgery can only provide temporary relief.

 

Also, couple of medications for treatment of Neuropathy pain are causing  stomach pain and I cannot stop these medications. I have tried over dozen of medications and almost exhausted all other medications.

 

Many times, accepting current conditions and living with the limitations also becomes a challenge - such as why I can't hike any more. One time, I tried to hike 2 miles and end up in extreme pain for 3-4 days. So, I have to be content with activities such as reading, music, and gardening whenever possible.

 

Thank you and all members of the forum.


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Hello Kamlesh

 

I am really sorry to hear this! That you can no longer hike.

 

I used to read your posts that mentioned hiking, walking and so forth and marvel at a fellow sclerodermian who was so active, I am sorry you've had to give this up. I hope that you eventually enjoy your new activities just as much.

 

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)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now