SKINSISTER

GI; Pseudo-Obstructions

12 posts in this topic

Hello,

 

I'm new to the forum and taking over the duties of internet research for my sister who's had systemic scleroderma for about 10 years. She's progressed from Raynaud's Syndrome, developed digital ulcers, skin fibrosis, connective tissue hardening and has recently developed gastroparesis / gastric dysmotility causing a number of pseudo-obstructions.

 

We've been slowly feeling our way through this new development, learning what gastric dysmotility is and does but now, after several hospitalizations, we've reached somewhat of a crossroads. Her Dr's are now saying that they want to do a surgical procedure to add some kind of nutrient port into her system. The idea is to make intravenous feeding easier and safer, however, we're still not convinced that it's necessary at this point. With the added risks associated doing surgery on a SSc patient, we're not all that sure it's even safe.

 

From what I've been able to gather online, there may still be some alternatives to surgery open. I'm not sure what her gut bacteria levels are but I did run across some info concerning SIBO (Small Intestinal Bacterial Overgrowth) and antibiotic therapy as well as (electrical) intestinal stimulation.

 

Has anyone got any experience with either of these treatments? Or with Gastric Dysmotility / Intestinal Pseudo-Obstruction that they might be willing to share? My sister lives in NY and is being seen by a rheumatologist / SSc specialist in NJ but it still feels like, sometimes, the doctors are all just guessing when it comes to what the next step aught to be. B)

 

Thanks for your attention and I hope all is going well for everyone out there.

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Welcome to the forums!

 

Your sister is very lucky to have you to support and research information for her. On our sclero.org website I found this page page on Gastrointestinal Involvement. Being knowledgeable about the disease is very important, it seems like you have done a great job with that so far.

 

Is it possible for her to see another specialist and get a second opinion? It might be a good idea if the one she has is running out of ideas for treatment.

 

Hopefully some else will jump in here with more information for you.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hello Skinsister

 

Welcome to this forum and I love the name, very apt.

 

I am sorry your sister is having these issues and I've no doubt people will join in with their experience as many here have gastro issues.

 

Sorry I can't provide any specific info myself, I just wanted to welcome you and your sister. :)

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hello Skinsister and welcome! How lovely that you are taking such a great part in your sisters care.

 

I do not have any personal experience with this particular situation, but I know of several of our members that do. So I hope they chime in and give you the information you need. The link Lisa provided is good as well.

 

Again welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Skinsister, After reading your post I'm a little unsure about what procedure the doctors a re suggesting. You say it is to make intravenous feeding easier so sounds like a central venous access port. I don't have one, but know others on here do and can tell you their experience. I would think one big advantage would be to no longer have the problem of getting needles inserted. Inserting a port is a relatively minor procedure. I think your sister's dr needs to explain exactly what procedure they want to do and the advanatges and disadvantages so that you can make a properly informed decision.

lizzie

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Hi, Skinsister, and welcome to the ISN Sclero Forums. Your sister is very lucky to have someone who is so involved with her care and to help her find information. The problem about researching for someone else is that you are removed from the original information so in explaining to you what the doctors say, your sister may dilute the information enough to cause confusion. Are you able to attend the doctor's appointments with your sister? Not that it is necessary, just wondering. I think Lizzie is describing a procedure for inserting a porta-cath -- something that can make life a lot easier for someone who must get lots of injections or drips. Except for the word intravenous, however, I am wondering if your sister's doctors may be suggesting the addition of an abdominal feeding tube for parenteral nutrition. We have a few members who receive all of their nutrition this way.

 

Lisa has given you a link to our medical page on Gastrointestinal Involvement which discusses this as well as giving answers to some of your other questions. Please check it out and let us know if there is anything else we help with. The link to Dysphagia will give you more specific info about alternate means of feeding and the link to Bowel Dysfunction discusses Pseudo-Obstruction.

 

Again, welcome to the Forums and thanks for being such a tremendous support for your sister.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Skinsister,

 

What a sweetie you are. I've had pseudo-obstruction. It hurts! I also live in NY and go to Lee Shapiro in Albany. He is THE guy in NY. On this site and on sclero.org you'll find his name and bio. He is AWESOME and very conservative as well as knowlegable. I don't know his schedule, he's probably booked, but he sees sclero people on Tuesday mornings and Wed. afternoons. Check him out. I'd be leery of operations as well. You are a great sister...good luck,

 

Karen

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Welcome to the board and congrats on being there for your sister. If what you are talking about is a port I had one put in this spring for my IVIG treatments. I have absolutely no veins and the ones I do they say are like little spider webs so this has been wonderful to have. Any time I need an IV or blood drawn they can just access the port. There is no danger to us, and I, like your sister, also have sytemic scleroderma. The procedure takes about 1/2 hour and is not at all dangerous. I highly recommend it if this is what your sister needs. Good luck to you and keep us posted on how she's doing.

 

Warm hugs,

 

Peggy

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First I'd like to thank everyone for their support and encouragement. Dealing with health issues is never easy but it can be even harder when there is so little known, even amongst professionals, about an illness.

 

Jefa-

Yes, research is made much more difficult with second hand knowledge of any particulars. It's complicated even further by the fact that I live over 300 miles from my sister. However, I'm the only person in my family who has any real proficiency with anything involving computers or the internet. This includes my sister who owns a computer and has internet access but has little too no interest in either. Despite being told by myself and others about the incredible info resource that the internet represents. So it falls on me. Unfortunately, my families non-technical background also extends into the medical arena and this complicates things as well. What they described to me sounds like Total Parental Nutrition (TPN). On the advise of her doctor's a catheter was inserted and the family is currently being trained in the home use of it. I've also told them to ask her doctor's about Bowl Stimulation (Electrical) to see if that might also be a viable option.

 

Peggy-

Thanks for the reassurance. As I mentioned, the procedure has already been done and it seems to have turned out ok. Apparently there is a difference between an IV Port ( I believe she already has one and it's proved invaluable) and a TPN Catheter. What's got me concerned now is the infection risks inherent with TPN. My sister does have Home Help and the family should be able to handle whatever procedures are necessary but, again, their non-technical nature does have me a little concerned.

 

Does anyone have any general tips or suggestions for making TPN administration a little easier / fool-proof?

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Hi again,

 

Just thought I'd give everyone a quick update.

 

I'm not sure if it's common with Ssc, but winter seems to be a pretty rough time for my sister. The combination of cold and dry seems to exacerbate her condition and, at some point during most winters, she ends up back in the hospital with GI complications. This winter has been no different.

 

A few weeks ago she was hospitalized with a distended belly and painful cramping. We've come to recognize this as a flare up of the pseudo-obstruction in her bowel and have become familiar with the routine; A catheter is run into the down into the stomach and waste/contents are flushed out until the bowels are clear. This time it looked like she was only going to be in the hospital for a few days, but then she ate something.

 

I understand that it's hard going weeks, sometimes months without actual food. That TPN provides nutrition but sometimes nutrition isn't enough. That the desire to chew your own food, to actually TASTE it, can be overwhelming. But this was not a good time to try.

 

Whatever it was she ate cause her abdomen to swell right back up. Practically within a few hours. The doctors agreed that this was much too quick and, after a series of x-rays that were unable to clearly define the problem, decided to do an exploratory.

 

Once inside they discovered that she had a volvulous (an abnormal twisting of the intestine causing obstruction) in her lower intestine which had to be straightened out immediately. This was all done fairly successfully however, there where complications with her lungs and breathing so she ended up spending a week in ICU.

 

At this point she’s out of ICU but still in the hospital. The doctors want to make sure her lower bowel is complication free and she still needs some time to make sure her lungs have completely recovered. But all of this still begs the question of what we’ll be able to do once she’s released and has to administer TPN at home.

 

The doctors are telling us it’s fairly easy but, from what we’re hearing, certain urgent care facilities won’t deal with or even touch a TPN port due to the infection risks / nutrition deficiency problems that come up when dealing with mixing and preparing supplements.

 

Is anyone out there doing this themselves? Do you have Home Health assistance? Would you recommend it?

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Hello, Skinsister. Thanks for giving us an update on your sister's condition. Hopefully some of the members with similar experience will chime in, but in the meantime, I thought you might like to read some of the Dysphagia Personal Stories from our Dysphagia page.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi SKINSISTER,

 

I am so relieved for your sister AND her loved ones, that the volvulous was found and were able to straighten it! She obviously has had a very rough go of it and hopefully, this relieves some of what she's had going on.

 

I don't have personal experience with a TPN, but I know there are a few who do. Hopefully, you will hear from some who can share their thoughts about it.

 

In the meantime, I am definitely keeping your sister and your family in my thoughts.

 

I concur with all who have said that you are a wonderful sister...thank you for all you are doing and thank you for sharing!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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