Posted 26 December 2009 - 03:03 PM
I know that most of you are enduring snow and ice and freezing rain so my WARMEST wishes go to you all - here today the temp. is about 27C in the house so all the doors are open. I have plenty of WARM to send you - just hope it gets there. Sorry I don't know what 27C converts to but it is surely more than 70F.
I am writing to introduce a new subject which comes into the realm of unmentionable, but I guess we are used to that sort of thing.
I wrote a few weeks ago that I have been told I have mild PH, and that diagnosis came from a barrage of tests my Gastro Doctor set up for me. In this country we get pretty good care but in my case I had not had a Lung Function test since 2003 and the previous Echo Cardiogram had not been very satisfactorily reported (in my opinion). So when I approached my Gastro Doctor to consult him privately (i.e.paying by insurance) about my problems with my bowel he ordered a full range of testing inlcuding Lung Function, Echocardiogram, Anal Manometry,Defecating Proctogram, Sigmoidscopy (small colonoscopy).
My history is that when I was about 40 I started to have an anal prolapse, which I put up with until 1994 when I had a surgical repair which made a huge difference to my life. However that did not change the fact that my sphincters were not working properly (mirror image of what was happening in my esophagus) so although things were somewhat better, I still had to stay within cooee of a toilet as much as I could. In 2005 I had a procedure which tightened my external sphincter - and that did help for a few years - but now things are worse than ever. The Anal Manometry showed that my rectum does not relax (i.e. rigid like my esophagus) so it does not act as a storage unit as it should. So when any solids arrive there they want to just keep on going. Consequently I get about 1 minute's warning to head to the toilet and I am frequently further away than that! It is called having a LIFE!
The reason I am starting this topic is to find out if others have this same problem, and what you all have been able to do about it - if anything!
The Gastroenterologist has suggested that there is probably not much that can be done surgically any more, and the choices are either a Colostomy or a Caecal Stoma. To explain, to anybody who hasn't heard those terms before. An opening is made in the large bowel and connected to the outside of the body and either a bag is fitted which needs to be emptied, like a garbage bin! Or some sort of plug fitted which allows one to self-wash.
I have read some personal stories on a Paraplegia site, and those talking there sing the prases of the freedom self-washing gives. So much so that I am beginning to think just do it - what are we waiting for. However, it is summer and holiday time and everybody in this country goes on holiday for at least a week to two weeks or more so I just have to wait and consider what seems to be the best thing to do. I am thinking about possible consequences, like infection, failure of the "hardware" and whatever can go wrong in these procedures. I am not generally cautious about surgery where I can see it will help with little chance of failure but this time I really feel I need to be very sure of what I decide to do. If I ask my general practitioner or the Surgeon they will say no problem I am sure. I want to know if there is anybody out there who have had any experience, and to hear what you think.
My best wishes to you all - and I hope some or our WARMTH has filtered through.
WARM Hugs from Judy T in New Zealand.
Posted 27 December 2009 - 02:12 AM
I have rectal incompetence too -- very little warning before needing a bathroom. I also have diarrhea very often and then it is almost impossible to get to the bathroom in time. After I had my esophageal manometry (done for upper GI issues) which showed absolutely no measurable activity - my GI doctor and I discussed the rectal issues. He said I could have an anal manometry done, but he was sure it would show the same malfunction, as the two anatomical structures are very similar. He and my surgeon (for a Nissen fundoplication) both recommended I see another doctor who specializes in rectal biofeedback stimulation. I haven't gone yet because of the necessity of other surgeries (the Nissen last year, carpal tunnel surgery 4 months ago on the R which has only been partially successful and my range of motion is still limited - I am supposed to have the L carpal released too, but I am afraid since my R hand is still very stiff...)
I try to control the bowel issue by not eating before I have to go out of the house. I find that when I do eat, I am almost sure to be in the bathroom within the half hour, and then I'm ok for the next few hours, so at least I can plan around availability of a bathroom! Not the best solution, I agree, but 90% of the time, it works for me for now.
There was another member on the forum who had the rectal stimulation surgery recently -- hopefully, she will join in the conversation.
I wish you the best for whatever solution you decide on. Let us know your progress.
Posted 27 December 2009 - 05:21 AM
I have an incontinent problem as well, but thankfully it has gotten better this past 6 months or so. I still have "days" where it can be a problem but not like it used to be. I was told that I could go for rectal biofeedback stimulation, but that it really isn't all that successful, however it has worked for some. But I am not as bad off as you or Red either. So someone who isn't that far, perhaps it would be a good thing. Right now, I know where all bathrooms are. I found it hard when I was worse off to get anyone to talk about it. I hope that others who have the problem do chime in here. It's something that needs to be discussed and not ignored. I am interested to hear what others have to say as I worry about it getting worse. I was first diagnosed with Scleroderma in 2007 and had all the motility tests done top to bottom in 2008. Thankfully with imuran and prednisone, I have improved. I think if I "had" to make a choice, the self wash one sounds the best to me, but like you, I would be doing my research first, it's not a decision to make "lightly" for sure. Please keep us posted and good luck with whatever you choose. I wish I had more to add. - Lisa
Posted 27 December 2009 - 08:24 AM
I am a new member to the board. I do not really have any helpful information for you but to say you are certainly not alone. I posted a topic on this the other day. I have a problem with the diarrhea within fifteen minutes of eating. They are going to do a colonoscopy soon and I am thinking they will figure out it is caused from the scleroderma. Some of the ladies here posted some good information on my posting. I wish you all the best and will be interested to hear what you decide and if it worked. Good luck.
Posted 27 December 2009 - 10:47 AM
I don't have this problem but I wanted to thank you, and those who have posted, for talking about this problem. It's is a difficult issue but effects many people. I hope you make the right decision about the surgery.
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Posted 27 December 2009 - 01:06 PM
Thanks for your replies, it really is comforting to know I am not the only one - I was beginning to think that maybe I was an orphan with an orphan disease, but just maybe there are one or two others about who understand.
Yes eating and activity can certainly cause problems for us. One of my worst times is when we are on holiday, generally touring by car, we stay in motels and eat out at different restaurants each night and often in a small town my husband (bless his heart) wants to walk there and back and take in the atmosphere of the place! You can imagine my situation - wanting to allow him this pleasure and sweating to get to a toilet.
The other worst times seem to be at home in the afternoon and evening when I start making dinner, I start, get into the middle of making something, have to stop and go to the loo, wash my hands, start over, stop, wash, start over and so on and on and on. This morning I started to make the coffee, had to turn the steam off...turn it on again...turn it off again!
My dear husband has had the message that he will have to learn to cook one of these days. He is off right now at the supermarket with the list - he is good at that and seems to enjoy shopping so I encourage it whenever I can.
I am still hoping to hear from somebody who has chosen a surgical solution.
tngrits you mentioned Amanda's story about colonoscopy preparation, I have had SO many colonoscopies I cannot tell you but would love to read a funny story about it. Where can I find it??
Bye for now - will be looking for more comments.
Posted 27 December 2009 - 08:06 PM
Posted 28 December 2009 - 04:56 AM
Posted 28 December 2009 - 06:24 AM
When we would travel and stuff I'd barely make it to the bathroom. Now I'm constipated for the first times in my life from medication. But it is difficult to go, cause the bum don't work well to push things out. And I get hemorrhoids that get bloodclots that have to be cut out, very painful. I still have times of very loose, but not as often as before. I was on Asacol for the loose and ulcers in my colon. Seems like since I went on Humeria for RA the bowels healed some. But now they call it Inflammatory Bowel Disease. I've also had the reflux and esophagus problems since 1990's. And had surgery for my esophagus in 1994. Helped a lot. I was finally diagnosed with Scleroderma this year in June. Finally something that explains all this stuff.
Whatever you decide to do, I'm sure it'll be quite the adjustment. I hope all goes well and that you'll have success. This disease is a life of adjustment. And you are not alone!
Posted 28 December 2009 - 06:48 AM
I don`t know if one of the options you are thinking of is a sacral nerve stimulater, but it worked for me quite well once it was set up to my body using a computer. If you look in some of the previous posts I have put some details in about my results. I hope you find something that works pretty soon.
Posted 28 December 2009 - 08:43 AM
Just try to send some of that warmer weather over to England please, it's hovering around 0 degrees here!
I have only just seen this post but I have been struggling with the same sort of issues for a few years now, I eventually plucked up courage to tell the consultant and he sent me to get all the tests done which showed problems with the inner sphinctre and nerve issues (I had both Carpal tunnels done 12 months ago along with other nerve issues), I had to have biofeedback and had to try various things first but since everything failed it was suggested that I had the sacral nerve stimulation done. I had a temporary one done and this worked quite well so went ahead with a permanent one at the end of October. It has changed my life, it gives me more time to get to a toilet which is means I can get out and about without worrying so much about where the nearest toilets are. I find that if I give myself a bit more time in the morning before going out that I can last while shopping etc. It was one of the best things I could have done, the downside is that the battery (implanted into my buttock) will last for about 5 years but this is dependent on the settings that your controller is programmed for. I have a number of programmes but have now settled on one of them, you can also turn off the stimulation if going through scanners at airports etc - I was also given a card which just says I have a neural stimulator and who my doctor is and a contact number for them to check if need be. So far mine has not set anything off but then I haven't flown with it in yet!
If anyone wants to know more just send me a PM.
Hope this helps.
Posted 29 December 2009 - 12:10 AM
Posted 29 December 2009 - 02:05 AM
tngrits, Look into the prescription Colestid. It is used for more than just cholesterol problems. My gastroenterologist prescribed 3 pills 2 times daily and it really helps your food stay in your system longer. You can't take other medication for about 4 hours but you can eat and your stools come through your system in a more normal fashion. The urgency problem isn't as much of a problem. I thought I would mention this so you can ask about it and see if it might be an option for your situation. Good luck.
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Posted 29 December 2009 - 04:39 AM
Posted 29 December 2009 - 09:13 AM
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Posted 29 December 2009 - 01:00 PM
Yes, Carthage is not that far from me. I lived in Memphis a couple of years but hated it. I LOVE the Nashville area. Hey, if you know of any really good antique furniture stores around there let me know. And, thank you, I am really enjoying the board.
Posted 29 December 2009 - 09:14 PM
First of all thankyou to all those who have replied to my questions. Still nobody who has had to have a colostomy, never mind!!
Sacral Nerve Stimulation looks like a good solution for those of you who have chosen that road, but unfortunately, as far as I know at this moment it is not available in this country.
My general practitioner doesn't know of anybody doing it, and some of the literature I have read on the internet say it is available in Australia but there is very little uptake because it is not performed in the Public Hospitals and Insurance providers won't fund it either. I will continue researching it here but am not very optimistic.
We have good friends in Vancouver area who are both doctors so maybe I could wangle a trip there to have it done!!! We would still have to pay of course - ah well we can but dream!!
Remembering back to some posts from those who have diahorrea as well makes me want to say that I used to as well, but lately my Gastro Doctor has had me on a higher fibre regime as well as a bulking agent and a frozen Kiwi fruit juice called Kiwi Crush. Kiwi fruit have wonderful natural abilities to help digestion, trouble is that once the fresh fruit get to the US or UK they are not really themselves any more!! But I think the vitamins and enzymes they make will probably still be there. I know one shouldn't promote commercial preparations but this is just a fruit in its naturally created form - well squashed and frozen!!
Right now I had better get back to doing more research on Sacral Nerve stuff.
Love and Hugs to you all.
Posted 05 January 2010 - 10:59 AM
I am back on the job of trying to discover whether Sacral Nerve Stimulation is an option for me. Most businesses are back at work this week, but so far I have not had any luck with the information I am looking for. A girl at the Ministry of Health couldn't find anybody to ask and said she would phone back!!
I asked the Receptionist at the Gastro Clinic - she said somebody would phone me back but nobody has so far. Now I am wondering just what area it would come under - maybe it is Neuro Surgery - does anybody know.
Hope it is a bit warmer where you all are - it is pretty hot here.
Posted 05 January 2010 - 01:17 PM
I hope the holiday dinner hasn`t upset the stomach too much! Happy new year to you. I had my Sacral Nerve Stimulater fitted in 1999 at a hospital which specialised in bowel problems, it was St Marks in Harrow England (thoroughly recommended).I have recently had a problem with my implant and as it is at the end of it`s second 5 year cycle I guess I might be in for having it changed. Although this is something I could well do without I would not still be working if they hadn`t fitted it. I find the best way to deal with the stomach problems is to inform friends and family then we all accept it as normal for me. Small things can help like when I go to watch motorcycle racing with my friends we use the motorways because there are more service stations with toilets,some of the toilets at the racing circuits are another matter. Sorry to go on but I have tried to live with it for a long while and if I can help anyone to cope it will make me feel better.
Posted 06 January 2010 - 10:11 PM
It is now about 12 weeks since I had my sacral nerve stimulation done and it seems to be working fine and has certainly helped me.
You asked about which specialism the operation might be done under, if it helps mine was done under the Department of Lower Gastrointestinal Physiology and the Colorectal Surgery departments, hope this helps.