Has any one undergone a 2 week trial of Sacral Nerve Stimulation?
Wondered how it went, and if successful did it work straight away or was it slow to show results over the two weeks.
My bowel hasn't worked for three and a half years, constipation & soiling. Deep joy.
Thank you.
Hi beesmum, I have a permanent SNS and luckily after 2 trials I was a good candidate. I had severe soiling for 2.5 years and did biofeedback and loperimide with no real help. The SNS trial worked quickly as long as I could keep the stools firm with the correct dose of loperimide for me. It took a while to get the correct programme for me once I had the implant, but there was lots of support for this. Good luck with your trial!!! X
Thank you KatieAnna, I really appreciate your reply.
You had two trials for SNS? I'm half way through my trial. I've had chronic constipation for 3.5yrs, with occasional soiling. Biofeedback didn't help me either, laxatives don't work, tho I have to take Laxido to keep stool soft, otherwise I get "bunged up" very quickly & very uncomfortable. I use an enema board every day to empty my bowel. I found a wonderful team in Oxford who are helping me, I only found them last April, so glad I did. Thank you for responding. Best wishes.
I'm glad you're in the system. I was told that if the first trial worked they did a second one to make sure before they implanted it. Both times were amazing and I was frustrated with the wait until the final implant. It only works with firm stools, so I have to take imodium daily to make sure there's no accidents, which is my main problem, so your constipation will be an asset!
Once the SNS was settled in after 4 weeks it was switched on and then it took a few weeks of trialing different settings to get the optimum benefits. I was reviewed every few months, then 6 monthly and now annually. The device lasts for about 5 years or less, when it has to be replaced. The battery is checked at every review.
The trials were really painless but the implant was a bit sore for a week or so. I'm conscious of it when I sit in certain positions, but it's generally imperceptible. I really hope it works for you. Good luck xx
Thank you Katie Anna that's very interesting. I have to take Laxido now & then to keep me soft. Biofeedback nurse said to keep taking Laxido, obviously a mistake! I'm half way thru the trial, no more Laxido.
I met a lady a few months back in the hospital waiting room in Oxford, she had her implant 9 yrs ago & the battery had just run flat. Wow.
Thank you for all the info re schedule to get you sorted, I had wondered how long it all took. They had trouble getting the wire in last week, medic only 80% happy with it. apparently my coccyx not straight, seemed to hamper things. Praps wire should have gone in the other side, I did ask.
I have bladder issues too, that problem was hugely improved a few hours after the wire implanted, I was amazed. So colon now needs a good talking to & firm poo. Got it.
So, no Laxido, no Bio-Live yoghurt, no Bio-Kult, just veggies, salads, fruits & lashings clotted cream. Yum. I have a ketogenic diet, no carbs.
Thank you so much.
9 years for the battery sounds brilliant!! I haven't met anyone else with the stimulator so I'd love to keep in touch to see how it goes for you. You sound like a positive person so hopefully that will help you, despite your bent coccyx! 😒. Best of luck and keep up with your diet. Xx
Yes I'm happy to keep in touch, that would be great.
Looking back 6mnths you & I communicated before when I put up a post re limited scleroderma & SNS. You responded, I was so pleased. Can't believe it's 6mnths ago.
I'll let you know how I get on this next several days.
Have good wk-end.
Thanks and you too. X
Morning.
Can I ask you a quick question plse - what dose imodium do you take daily?
I had to use my enema board this morning as I started soiling. Damn. I've only a few days left on my trial, desperate to make sure firm poo. Tempted to ask if Oxford will extend the trial a week, perhaps miracles happen.
Hope all's well in your world.
Thanks.
S x
Hi I'm sorry to hear that. I take 10 mls if liquid imodium twice daily. I find the liquid much easier to use as I can change the dose to meet immediate need. I think it's on prescription only, but it's not expensive for the NHS. Keep trialing everything you can that you think might make a difference. Good luck. I'm thinking about you. X
Hi. My trial coming to an end on Weds, I'm soiling terribly, spoke to a Biofeedback nurse re Imodium, been told not to take it, got to put up with soiling until Weds. I'm gutted. Got the impression she thought the trial had failed. Bummer.
May I ask are you in the UK? I mentioned I'd spoken to someone on SNS & the use of Imodium, nurse dismissed it straight away. I'm hoping the doctor who did the procedure two weeks ago will be taking the wire out, I can then raise all sorts of questions. Bit worried whether they'll offer me anything else, or not.
Hope you are well. Christmas soon. Take care.
Hi yes I'm in the UK in Newcastle upon Tyne. My trials went well and after I had the stimulator implanted I met the medittonic company rep in the hospital at the appointment to switch the implant on. She definitely stressed the need for me to have firm stools as the implant doesn't work on looser stools as they don't stimulate the nerves involved enough for the implant effects to be of any use. This is very true for me. If I've been on antibiotics the implant stops working as I always have loose stools on antibiotics. As soon as I can I've firmed up again with Imodium. I feel very sorry that you're having these problems. Don't just give up, see if you can speak to someone else or the rep. She's really nice but I can't remember her name. Your nurse specialist should be able to help you to find out how to contact her. It's a bit of a process to get the right settings on the nerves and the right dose of imodium liquid, but it can be done if you can have the implant. I'm thinking about you. Good luck on Wednesday. Xxx
Thank you for that.
Ah Newcastle! You are Geordie, Tyneside?? I've two very good friends from that part of the world, both of them complete nutters, both horsey people with neddies, they make me laugh. I'm Yorkshire grit, tho have lived in Wiltshire for a long time.
I'm not the sort to give up, I've fought tooth & nail to get this far for almost 3.5yrs, cost me £1000,s, NHS been a struggle to get any help. I'll move heaven & earth to find a solution.
I'll research Medittonic before Wednesday, the firm poo makes complete sense. I'm wondering if the stimulation is too strong for me hence the soiling I'm experiencing at the moment, usually It's the opposite. I'm very sensitive to electricity, nearly pass out near a pylon, cannot tolerate overhead cables/wires. Bizarre.
Everything you have told me is so interesting and useful, thank you. Good to be forewarned, medics sometimes lose sight of what we have to live with, quality of life etc, and we need to know the ins & outs of these things.
Moan over. My Yorkshire blood and attitude gets me into trouble sometimes, sod it!
I'm so pleased you it's worked for you.
Yes I'll let you know how Weds goes. S x
Medtronic?
InterStim Therapy, just dug out the Patient Guide I was given.
Will investigate further.
Thanks. S x
Oops, sorry for the mistake in the company! I hardly notice having the stimulator at all so have put everything away out of sight. Good old Yorkshire grit and straightforwardness will get you through this maze of different NHS systems. I was under the colorectal team for all the initial tests, but the rest of the process is manged by the urology team. They are so helpful and caring. 🤞🤞for you on Wednesday. Xx
Hi. How's you?
Well I had wire removed. I was really worried I'd be told that was that as my trial wasn't successful. I didn't have to ask for another trial or justify it at all. Nurse said the doc was concerned as she couldn't get more than 80% satisfactory placement of wire by the sacral nerve, so she wants to do the trial again with xray at the same time as placing the wire so she can get a precise location. I was so grateful. Hopefully will be in January. Phew.
You'll never guess today - my bowel has been wonderful. 8 trips to the loo!! Wow, I'm almost 100% convinced the stimulation was too much, too high, hence why I soiled so badly, I couldn't understand why I didn't become constipated like I usually do. I had 10 days without Laxido, normally I'd be completely bunged up after a couple of days.
Not expecting todays "evacuations" to continue, tho would be delighted if it did! I'd had stimulator set at 0.8, going to put down to 0.5, I had it at that Mon pm thru Tues, I was so much comfier.
Anyway, huge relief, in more ways than one. Psychologically I feel on top of the world today, amazing what gives us a boost.
How are you?
S x
Hi beesmum, I'm so happy for you! I had both trials done with x-ray so that might be a reason why they were so positive. After the last one I begged them to leave it in as it changed my life so much. I also had some carryover after the trials which helped. Once you get the implant it's a bit more complicated to find the best channel and intensity of the stimulation. I found that having it too high gave me electric shocks in my feet!! Very annoying! I hope you have a lovely Christmas and get back on track afterwards. X
Hello KatieAnna
Apologies for long silence, yes I can understand you begging to have the wire & stimulator left as was, it's terrible going back to our inability to poo properly. Those who've never experienced it cannot possibly understand.
Electric shocks in your feet not nice! I have neurological issues with my left leg, caused by thymoma (cancer of thymus), symptoms were awful electric shocks in my left buttock, leg, feet, toes, and constant "buzzing". Thymoma was removed in July 2016, neuro issues improved hugely straight away, tho I still get some uncomfy sensations in my left buttock, leg, foot, toes, so it's very useful to know you had electric shocks in your feet, thank you. When I have my 2nd trial I want to discuss with the doc beforehand which side the wire will be inserted, it was the right side last time, I don't think the left side is a good idea.
When doc was trying to insert the wire last time & struggling quite a bit (took over an hour), I obviously had many stimulations to test what I could feel. When I got home after the drive back I got out of the car & my entire bottom felt as though I was sat in a deep puddle of freezing cold water, weird, it lasted hours.
Anyway, I do tend to go on abit, sorry, it's just so nice to chat with someone who understands and has been through it with a successful positive outcome. We are so very lucky to have the NHS, finding the right team is the challenge. I'm a great believer in we have to be accountable for our own health, it's up to us to find a solution, fight for it if necessary and see it through.
Have a lovely festive season. I have a yummy recipe for home-made Baileys, that and Marshfield (local icecream makers) Salted Caramel icecream, Guylian chocs, & yummy menus will make me the size of a house. Keto diet will go to pot for awhile. Me & dog will be walking on Salisbury Plain to work it off. Thank goodness for my enema board.
Look forward to a positive, successful 2020.
S x
Hello beesmum, thanks for the update. I've never heard of thymoma and the weird neurology caused by it. I have the implant on the left side but the electric shock feelings were on the right side. They weren't terrible, just weird, and stopped as soon as I turned the intensity down or switched channels. Now I have a slight nipping feeling in my anus when I sit in certain positions, but it reassures me that it's working.
I wish you lots of luck with the next step and hope to hear that it's all going well in the next few months. Have a lovely Christmas, overindulging in those delicious temptations and walking it off with the dog! 😂 Xxx
Happy New Year
How are you? Hope Christmas was enjoyable, seems like it never happened.
Good news - I have a date for my second trial - 24 January, Oxford. Yay! I did a jig around the kitchen when I got the letter yesterday.
Nurse was very grumpy when she took the wire out after my first trial back on 11 Dec. Didn't want to go thru my diary sheets or feedback at all. I was totally shocked. The colorectal surgeon is lovely, I'll make sure she's made aware of my experience & how I'll tackle the stimulation level this next time. I'm so pleased you are there with your experience, so useful, it really helps me.
Hope your innards behaving and you are well. I've started a Fast for perhaps 10 days, I'll see how it goes. I'm a great believer in Fasting, it has to be done properly, give my innards a rest before 24 Jan.
All the very best for 2020, take care.
xx
Hi Beesmum, that's really positive for you. I hope that this is the start of a great new year for you. Good luck with the next trial. Take care and ask any questions you need to, I'm happy to help if I can. Xx
Hello KatieAnna
How are you? My 2nd trial on Friday, Oxford.
May I ask a question? When you had your two trials did you have to take the Imodium as well? I ask because you mentioned you have to take 10ml daily, or whatever you need.
Looking forward to the trial tho not the nurse, she's very grumpy!!
Hope you are well. Days drawing out, Spring soon. Yippee.
Thank you.
X
Hi Beesmum, I hope it all goes well this time. I was just thinking about you this morning!
I'm sorry that the nurse is grumpy. You should not have to worry about that 😐.
I didn't take the imodium during the trials as they wanted to check it could work, but I always tend towards loose stools, so the imodium is used to firm things up. The SNS only works if the stools are solid and firm. I currently take between 15-20mls twice a day. I have been on antibiotics which always give me diarrhoea 😒. I'm improving now though. This is such a difficult area to manage, isn't it? I hope you get great results and good support from now on. Take care and let me know how you get on. X
Hello KatieAnna
Great to hear from you, thank you for that info.
May I ask clarification plse? If your stool tends to be loose (presumably it was during the trial?) and SNS needs it to be firm, how was it during the trial? How was the trial deemed successful? My bowel went into overdrive, too stimulated perhaps!
Sorry I'm asking such personal questions. The nurse will not discuss anything with me. She took the wire out last time, no consultant in attendance. Nurse refused to look at my diary sheets, said they were too complicated.
I rang them last Monday as my rectum & anus (isn't that a horrible word?) is very uncomfy, I've very slight prolapse, worried it's got worse, wanted to quickly chat so they are aware before tomorrow. She refused to discuss it, told me off.
Consultant is lovely, going to ask if I can have a consultation with her on her own, and a change of nurse!
Anyway, thank you so much for all the useful info, it's helping me greatly. So pleased I found you.
Hope you are well & innards behaving.
X
Hi Beesmum, don't worry about asking me for clarification. I know it's a weird topic for discussion, but in these circumstances it doesn't matter!!
Having that horrible nurse must be such an added stress for you. The one I see is the urology nurse specialist and she is really caring and helpful. I agree that speaking to the consultant would be a good idea.
Sorry to hear about your prolapse. That must be uncomfortable.
On the topic of my trials, the loose stools firmed up with the temporary stimulator,which was really great. However, the permanent SNS hasn't had as strong an effect, so despite it really helping, I have to take the imodium to help it. When I spoke to the rep she seemed to assume that I would need it, so I expect lots of people do to prevent incontinence. I don't know how it affects people with problem constipation as I love my mild, induced constipation!!
Good luck with everything. Xxx
Thank you KatieAnna, that's really helpful to know.
This last two weeks my bowel has behaved very strangely, bizarre, it seems to have morphed into something else. I'm either spectacularly soiling, no warning, or constipated, tho when I use my enema board (which I have to use daily) the stool is very soft almost diarrhea. What a lovely topic.
Bowels, who'd have em.
Thank you for your prompt response, really appreciate it.
Best wishes,
X
I wish I could do more to help, but I'm as puzzled as you about how bowels work. I hope the trial overcomes these weird issues for you. All the best for everything. X
Hi, how are you? I hope you're well in this miserable wet, overcast weather.
Well I had my procedure, it went very well, didn't take long at all. My appointment almost two hours late starting. A woman in the bed next to my cubical had just had a new stimulator fitted. Great excitement around her bed, several biofeedback nurses, an American & British woman from Medtronic, colorectal surgeon or two.
This lady is the first patient to have the latest stimulator fitted, anywhere in the world. It's the very latest in technology, able to have MRI scans with it fitted and it has rechargeable batteries. Wow. Colorectal surgeon said that's the type I'd have if I was given a permanent stimulator.
I was euphoric after the procedure, on a high, couldn't wait to get going.
Got home, quite late, 8pm. Switched controller on, nil stimulation. Couldn't believe it. Tried again later, had to turn it up very high then got stimulation in my lower back near where wire inserted, nowhere near where it should be. Tried again this morning, stimulation has moved to the side of my body. Completely gutted. I'm so careful how I move about.
The only thing I can think is on the way home I had to do an emergency stop & swerve to avoid a 4x4 that cut right across the front me on a roundabout. Would have lost front of my car if I hadn't.
Dreading speaking with my bio nurse on Monday. I've 9am dentist appointment in Bath Monday morning, sending bio nurse email then will phone her in afternoon.
An interesting point - Kim Gorresin my colorectal surgeon & Medtronic doc (present for the procedure), had a session with me before starting. My bio nurse had told her 1st trial had no effect on my symptoms. When I told her my bladder improved 100% she was taken aback, annoyed she'd been given duff info. Made me cross. Going to speak with her PA, get her email, update her independently re current probs with stimulation, just incase she'sgiven duff info again!
I'm doing my usual "rabbiting on". Apologies. It's so nice to converse with you as you understand. I don't usually bleat on about it all.
Hope all's well with you. Expect you'll get the new super duper stimulator when your batteries run out. Perhaps an even better one by then, connect to the internet thru it, hahaha.
All the best. I'll let you know reaction I get on Monday. Take care, happy stimulating!
X
Hi Beesmum, I'm really, really sorry that you've had such a disappointing result this time, but hope it's just because the lead has moved and needs to be reinserted in the correct position. They must be quite precarious. Hopefully they'll be able to fix it quickly. I'm glad you avoided an accident in the car though. Careless drivers have no thought for other road users.
I'm very impressed with the information about the new stimulator. I almost wish my batteries would run out faster now!! 😂
That nurse must be known for her attitude and failure to pass on the information. I think you're right about bypassing her. Wrong information is almost worse than none. Good luck with the phone calls and with the dentist. I'm really interested to hear how you get on. Take care. X
Morning KatieAnna, how are you? Well I hope. What a horrid blustery day.
Oxford last Friday, I was so relieved to have all the dressing removed, it was very uncomfortable. Grumpy Nurse not there!!! Yay. Lovely nurse named Jessica instead. The wire had moved, no surprise. I seem to have had a reaction to the dressing this time, awful "hives" down my lower back, hoping to see nurse at GP surgery, need someone to look so I can alert the Oxford team, I'm so hoping the procedure can be attempted again. Wondering if dressings and/or antiseptic wash was a different type.
Jessica is seeing colorectal surgeon this coming week to discuss. I said I'd keep them all supplied with Guylian Belgian chocs for a year if they allowed me to have the procedure again! I'm all for bribery & corruption.
I saw a colorectal surgeon in Salisbury last week to discuss a CT scan I'd had for my kidneys, (which are fine), the scan showed a thickening of the ascending colon wall, I've to have a colonoscopy to see if anything shows. Horrid procedure. Wondering if this could be due to my limited scleroderma, I've asked for my rheumatologist to be kept aware, (she's in Salisbury), and Oxford of course. All these colorectal surgeons seem to know each other, SNS is a hot topic.
I hope you are well. Days are drawing out, spring soon, can't wait.
Take care. X
Hi Beesmum, I think I've missed a bit of the story. Last message was that you felt that the latest trial wasn't working at all. Have they just dealt with that? I'm really sorry to hear about the hives. You're certainly having a difficult journey. I hope they agree to trying again. You've got a lot of people involved so they should be able to make a good collective plan for you. I had a colonoscopy too, which was fine, but the sedation knocked me out of being normal for 2 days! Try to keep your spirits up throughout this process. Meeting kind people makes a lot of difference when you feel so vulnerable. Let me know when you've seen them and what the next steps are. Take care and don't get blown away by the stormy winds!!!! 😂 X
Hello KatieAnna.
Ah sorry, I'm not explaining myself very well. The entire two week trial was wasted, the wire had moved, probably due to the emergency stop I had to do to avoid the crazy 4x4 when I was travelling back home from having the wire inserted on 24th Jan. The stimulation was near my right hip, nowhere near my bottom!! Fingers crossed I'm allowed to try a 3rd time. Be silly not to, having come this far.
I had colonoscopy in Sept 2016, I wasn't allowed sedation or muscle relaxant, it hurt like hell. The specialist doing it said my problems were all my fault, wouldn't listen to me, he told my GP a simple diet change would sort everything, he was quite rude. B*st*rd.
The colorectal surgeon in Salisbury is lovely, said not to worry, if sedation wasn't enough to stop the pain I could have a general anaesthetic for the colonoscopy. What a kaffuffle. The nurse was lovely too, gave me her direct phone number. Amazing how that makes everything so much easier.
Hoping to hear by the end of this coming week what Oxford's plan is, next step.
Great to hear from you. Hope all's well in your world. X
Hi, and thanks for the update! It makes much more sense to me now. I'm gutted for you that the trial was wasted, but I'm sure they will do it again. I'm so pleased that you have such a supportive team now. It does make a huge difference. I've had lots of contact with several teams recently as I have had loads of problems follow the facial infection at the beginning of January. I'm still not digesting food properly after the antibiotics and have lost weight. Everyone has been really supportive, but not always effective in knowing what to do. I'm just hoping it'll settle down soon. Good luck with the appointment in Oxford. Let me know how it goes and walk home😂😂xxx
Hello KatieAnna
Sorry for delay replying, you poor soul, how awful for you. Do you know how you got the infection? That's a worry. Antibiotics a double edged sword, they always stop my gut working, kill off the good essential bacteria. I've often been told to take probiotics, not sure they help, infact I couldn't tolerate them, could only take a 1/4 of a capsule otherwise I was very poorly.
Found out two days ago I've got shingles. The itchy lumps I thought were hives are shingles. Seems to be one thing after another, despair sometimes.
No word yet from Oxford. I like to think no news is good news, thinking positive.
Have you ever done a Fast? I'm a great believer in Fasting. If I've told you this before I apologise. I did my first 5 day water Fast in 1990, amazing, gives your gut a rest, allows the body to heal itself where it can. It has to be done properly though. I can send you details of a good book if you are interested, I bought my book in 1990, still refer to it from time to time.
Sending positive thoughts for the medics finding and sorting the problem, and your speedy recovery. I guess it's really messing up your stimulator. Annoying, depressing, frustrating. I feel for you.
Let me know how you are.
Hahaha, thank you for your good luck wishes, tho I will definitely not be walking home! I think it's 62 ish miles, a marathon.
X
Hi, I hope you hear from Oxford soon and it's good news. Shingles are really awful! I had them several years ago and like you I misdiagnosed them as hives from a bra strap. The nerve pain took ages to get better, but it got less intense with time. Have you got antivirals? It's interesting that antibiotics affect your gut too. Did you have very slow gastric emptying and horrible bloating and wind? I've also got vomiting several hours after a meal, which makes me not want to eat. Surprisingly, my stimulator is still working as long as I have solid food. How long did you take for it to get better? I'd love to read about the fast if you could send me the link. Fingers crossed for your next appointment in Oxford. Take care and lots of love. Xxxx
Hi KatieAnna
Yes, Biofeedback nurse meeting with colorectal surgeon this week, fingers crossed I'm allowed another Trial. Tho expect shingles will have to clear up completely before I can have a dressing on again for two wks. I think shingles can take weeks to clear.
At the moment shingles quite mild, very itchy sometimes, no pain thankfully. Medication iffy, spoke with pharmacist this morning, hydrocortisone cream make thing worse within a few seconds. The tablets Aciclovir not having much effect, itchy lumps & bumps still appearing, now on my chin & neck now too. Tad scary. Hoping duty GP will ring me before surgery closes at 6pm.
Re Fasting - "New Life Fasting Guide" by Hellmut Luetzner. I got my copy in 1990. I find Fasting easy, I know many people don't. Amazon have it, tho you can buy slightly cheaper from other suppliers thru Amazon.
Do you mean how long did the effects of antibiotics take to get better? Yes I. have slow transit, I don't really get much bloating or wind as I'm on FODMAP, reducing fermentable carbs. Because I have my enema board I can live abit dangerously (so to speak), as I can take more Laxido, which will make me soil, then I use the board to help clear the soiling. It means I'm housebound, can't risk going out, soiling when I'm out is not for the feint hearted. I also eat more rhubarb, anything to keep stool soft. It isn't pleasant. I may have to use the board up to 3 times a day, each use takes up just over an hour plus up to 2 hours afterwards incase I leak. horrid.
Vomiting is terrible. I can understand you not wanting to eat. No answers to your plight is so depressing for you. Even tho these specialists do their best (hopefully) none really understand the distress caused by our malfunctioning bowel. And we somehow cope.
Thinking of you. Love & hugs. x
Hi KatieAnna
How's you?
Good news! No, not heard from Oxford yet, tho I rang GP surgery Thurs to speak to duty GP about my itchy bits as they getting worse, they didn't ring me back, so rang again yesterday Friday morning. My GP rang me within less than 20 mins, called me in as emergency.
Not shingles, definitely not. Meds completely useless, "hives" on my face & neck now, spreading up arms, down legs. Definitely severe allergic reaction, probably to dressing used in Oxford for two wk trial, that's when discomfort started.
High dose steroids, one massive dose in the morning for five days. 1st dose started to work already, yippee. It pays to be persistent, what a waste of time & medication. Large dose steroids effect sleeping, I'm wide awake at 1am!
How are you faring?
xx
Hi beesmum, it's good to hear that you have been given a proper diagnosis. I thought that shingles didn't spread like that as it follows a nerve root on one side of the body only. I hope the steroids work well and that you get back to your normal sleep pattern quickly.
I have tried almond milk and probiotics but still have diarrhea so back to the start!
I'll ring the nurse specialist on Tuesday when she's back from holiday. The GP won't have a clue what to do next!! 😂
Let's hope you hear from Oxford soon. Take care and lots of love Katieanna xxx
I feel for you, very upsetting coping with such awful symptoms and no swift resolution from medics. We always think they should resolve everything quickly, put them on a pedestal, quite often they don't know how, or what to do. And we cope. As you say, GP's don't have a clue.
Resistant starch may help do you think? Of course you know it's the fibre we're all told we must have which actually makes us have firm stool that peristalsis can push down the colon easily in a timely manner.
Salads can take longer to digest, raw food is much better for our digestive tract, gut health & general well being. Have you tried small salads, with extra virgin oil & sprinkling salt? Even a cup full every three hours, see how you fare, and plain water. Not sure about almond milk, I never touch it, highly processed; leave out probiotics, you may have gut imbalance?
Sorry, I'm teaching you how to suck eggs. You'll know more about your innards than anyone, including medics. Shame we don't live closer, we could tell the medics a thing or two, put the world to rights, write a book!
Thinking of you. Sending positive thoughts, love & hugs. Sally x
How are you?
Hope the flooding not effecting your part of the world.
How are the innards? Really hope medics pulling out the stops to get you better. I'd send you my book on Fasting to read, give it a try if you want, not sure if we're allowed to put addresses or contact details in our posts.
My colonoscopy Tues next week, yuk.
Thinking of you, such a horrid time, a worry.
Love & hugs,
Sally
Hi Beesmum, sorry for the late reply from your last message but I've been feeling very miserable with all the pain and vomiting 😒. I was in bed all day yesterday with it and hardly ate anything or drank much. I spoke to the nurse specialist and she told me to double my lansoprazole, which has helped and to go in tomorrow to see the consultant with an over night bag, so I'm looking forward to seeing her and getting some answers. This dose of lansoprazole is only recommended for a couple of days as it can affect the heart, so they might recommend something else.
Thanks for the offer of borrowing the book, but I don't think I want to put my address on the public arena. You gave me the link so I'll get it if things don't improve, thanks.
Good to hear you have the colonoscopy appointment, but I know that the planning for it isn't very pleasant! 🙄. I had sedation and it was fine, but wiped me out for 2 days. I hope you have a lift home and someone will be able to stay with you. I'll be thinking of you. I'll let you know what happens tomorrow. It's good to have this forum to chat with people who understand what this disease does!! 😍 Xx
Hello KatieAnna
So sorry for my late reply, I meant to get in touch yesterday. I really feel for you being so poorly, impressed you were called in yesterday, how did it go? You may of course still be there if you were kept in, which can only be a good thing.
All of this horrid, unpleasantness caused by the antibiotics? Your poor insides suffering terribly. Vomiting is one of the worst things to endure, especially with pain. Not eating solids and just drinking water is the best thing, give your innards a rest.
I quite understand re posting private info, not sensible.
I'll email again tomorrow, sending positive thoughts, love & hugs. I hope you are not on your own through this.
Sally x
I Sally, beesmum, thanks for your concern. I saw the consultant yesterday and she thinks that this is a Scleraderma issue triggered by the antibiotics. I have to have a low fibre high protein diet and eat frequently. She is concerned about the weight loss and I have to go to see the nurse specialist in 6 weeks for a review, or earlier if it continues to fall. At least I didn't have to stay in, and was very glad to carry my bag back home.!! Now I have to fit in all the full fat versions of bland foods, while trying not to feel sick.
I hope everything goes well for you today, and you get some useful answers and solutions to the horrible bowel issues.
Take care and lots of love, Katie Anna x
How are you feeling? Really hope your diet is helping, difficult for you.
Horrid meds for me to day, two Picolax sachets, yuk. Supposed to have two more tomorrow, not sure I'm up to it. No food today after light bfast, can't face it. Colonoscopy Tues 1pm.
6 weeks is a long time to wait to see the nurse specialist, hope you can get in quickly beforehand if need be. Do you still see a rheumatologist for your scleroderma? I see mine every 12mnths, tho they couldn't fit me in one year, so had to wait 2 yrs. Salisbury hopeless as scheduling appointments, I often have to ring & grovel to be slotted in.
Thinking of you, let me know how you are faring.
Love & hugs.
Sally x
Hi, you poor thing! That Picolax is effective, but brutal. I hope you manage to get it all taken tomorrow. I had a sachet of electrolytes to take at the end of the day and felt really buzzed! I'll be thinking about you on Tuesday. Are you having sedation? My brother in law didn't have any pain relief so he could go back to work but said it was very painful. I hope this doesn't happen to you.
I'm still pretty much the same, but can eat a bit more in the morning. By evening I feel nauseous and still vomit sometimes, but sleeping upright helps. I had to do a stool sample on Friday, spam waiting for the results. I don't know how long it takes to come back.
I see the consultant every 6 months. She's very kind and always tries her best. I'm really lucky to have such good access. My GP is kind too, but not very clued up on rare diseases. I wonder why we got this disease? It would be good to have some answers, but I think it's still a bit of a mystery.
Take great care of yourself and let me know how Tuesday goes for you.
Love Katieanna xx
Can't sleep so replying in the early hours!
Glad you managing to eat a little, vomiting & nauseated is so awful.
I had colonoscopy in Sept 2016, no sedation or pain relief as I was driving to & from. Terrible pain, also sigmoidoscopy March 2018, that painful too, much colic afterwards. I have a lift this time, so hopefully can have enough meds to knock out a horse.
Got toothache now too, hahaha, may as well go the whole hog. Got antibiotics, suspect Picolax flushing them out of my system rather quickly, damn.
Have you been to see Prof Denton at the Royal Free with your scleroderma? I saw him in May 2017 (or 2018, can't remember!), very nice chap, didn't offer me any treatment or guidelines, advice, bit of a wasted trip really, nil benefit.
My thymoma that was removed in July 2016 is blamed for my limited scleroderma, I'm supposedly borderline.
Glad your stimulator still working, that's a blessing. I've written to colorectal surgeon in Oxford asking for an update on next steps etc, I worry incase I'm forgotten, it's happened so often before.
Fingers & toes crossed you recover, albeit it slowly.
Love Sally x
Hi Sally, good luck with your colonoscopy and thank goodness you have a lift so you can have sedation. Xx
Hi KatieAnna
How are you? I hope you are feeling better & your diet is helping?
Bit of an aborted day yesterday for me, colonoscopy in Salisbury abandoned, too painful, I did warn the colorectal surgeons that would be the case, even with sedation & muscle relaxant. Got to try again under general anaesthetic, no idea when. Surgeon didn't know where he was in my colon when he aborted, as it's very long & convoluted, apparently.
Oxford rang this morning, want to see me next week, SNS colorectal surgeon wants consultation with me, I'm so pleased I can see her at such short notice, tho tad worried what she will say.
I was supposed to be picking up little dog Molly from the Dogs Trust next Tues, a companion for my dog Archie, his mum pts before Christmas, he's not happy on his own. Have I told you that before? Apologies if I have. I've had to delay the pick up date a couple of days, the Trust getting arsey about it.
A couple of days ago I got a Notice of Prosecution From Avon & Somerset Police, snapped in Bath 7.25am doing 30mph in a 20mph limit last week. Damn. No speed signs anywhere, I thought I'd be safe at 30mph. Nope.
I'm not having a good week. Feel the need for a box (or two) of Belgian chocs.
Look forward to hearing how you're faring, sending positive vibes from this end.
Love & hugs, Sally x
Hi Sally, you deserve those boxes of chocolates! What a horrible week for you, especially the aborted colonoscopy. What a shame it couldn't be finished, but pain isn't anything to be endured if they can do it under GA. Fingers crossed it's soon. I hope that meeting the surgeon next week has a better outcome and they've decided to go ahead with the rest of the process as planned. I can't see why not, as the lead moving was an accident rather than something affecting the efficiency of the stimulation.
Getting a speeding penalty is a shock isn't it?
I went on the speed awareness course for getting caught doing 34 in a 30 zone, and I was slowing down!! I'm not sure if you can do that course for doing more than 20 in a 20 zone, but you might be eligible. You have to pay, but don't get any points.
Your new little dog will bring you more joy and fulfilment than anything else at the moment. It's something lovely to look forward to and we'll deserved.
I'm slowly improving, thanks, and can eat a little bit more. I haven't been sick for a few days and have had some soup without much of a problem, so hopefully I'm going to be better soon. I've got protein in my urine, but I've had it before and it got better by itself. My weight is pretty stable, which is good, but I'd like to be able to eat enough to put a bit of weight back on. That's weird from most people's point of view😂!!!
I'm sending you lots of good wishes for positive news from now on. 🙂🤞🙏. Take care and lots of love xxx
How are you faring KatieAnna? I'm really hoping you are feeling better & able to eat more palatable food.
I've been looking through some old posts on the forum, 4yrs old, to do with scleroderma & ileostomy. I've begged many times to have an ileostomy, I know a few people who have them, all say it's the best thing that happened to them. No colorectal surgeon or gastro doc will discuss it with me. My rheumatologist says it should be fine, should be seeing her in May, I always have to prod the hospital for an appointment, they are very lax in making followup appointments.
Oxford GI next Wednesday, I have my list of things to discuss! Sounds like Grumpy Nurse will be there. Booo.
Dentist on Monday, yuk, may have to have a tooth out, root died. How dare it.
I'm picking up a little dog Molly from the DogsTrust Newbury on Thursday afternoon to come & live with us. She is a companion for my dog Archie, he's not happy on his own.
Let me know how you are.
I've been trying to find out how I save our posts, do you know how?
Love & hugs, Sally x
Hi Sally, sorry I don't know how to save posts. It's a mystery to me how all this works, but I'm glad it does!!
I guess that you must be feeling desperate if you want to have an ileostomy, but it must be a solution for some people. Having the chance to ask the surgeons is good, and hopefully will let them know that you are struggling so much. I'd be very interested in hearing how they respond.
I hope the dentist is gentle. I find it hard to open my mouth wide enough for all the instruments!
I'm eating a bit more, but still a very restricted diet. At least I'm not being sick anymore 🙂.
It'll be lovely for you to get the little dog as a companion for your dog. You have a lovely heart!
Let me know how you get on with everything. I hope you aren't too stressed by all your suffering.
Take care, love and hugs xxxx
Hello KatieAnna
Sorry for long silence, this week bit of a blur.
How are you this last several days? Really hope you are improving. Are you due to see any specialists, able to get to the bottom of why you are having such a terrible time?
For me, dentist was fine on Monday, bit bloody!! Not for long.
Oxford on Weds, colorectal surgeon lovely, happy for me to have another trial, I've agreed to get someone to take me & bring me back, stimulator can be on all the time then, & I can relax because I'm not driving. Well, hopefully anyway!
Little dog Molly came to live with us yesterday. She's a real sweetie. Not impressed with the DogsTrust tho. They do wonderful work & help 1000's of dogs, unfortunately they are so disorganised. I've got to have a cardiologist scan Molly, she has a heart murmur I wasn't told about, and another issue which has to be resolved. It will be very expensive, which I cannot afford & the Trust should really have sorted before Molly was rehomed. Such a shame. The Trust will pay for meds & vet fees for existing ailments, my vet will have to make a good case for me, otherwise Molly may not be able to stay. Archie isn't that impressed actually, he's more relaxed because there's another dog, tho jealousy is creeping in. He'll be fine in time, fingers crossed.
Colonoscopy with GA, Salisbury, on 24th March, not a long wait at all. Trial will be after that, depending on what's found I expect. I'll be upset if everything is "normal", obviously it isn't.
Let me know how you are. Hopefully you are feeling abit better and able to do more? How wonderful it would be to have innards that work like they are designed to.
Love & hugs. S x
Hi Sally
Sorry that this is such a late reply, but things have been busy today with grand kids' swimming and meals etc. I'm really happy for you that you had such a good visit to the colorectal surgeon, and that you can have another trial. Was the grumpy nurse there? You just have to get through the colonoscopy again, but I guess it will be under GA, so it should go smoothly this time. It's amazing that you are being seen so soon too. Getting a lift to and from the stimulator trial will be much safer for you! I wish this was all over for you. If it works it will transform your life. I'm really grateful to have mine. the implant and the wire are quite prominent at the moment as the fat covering them has thinned out since I lost weight. Hopefully it'll get covered again soon.
I'm sorry to hear that Molly has some expensive future needs. I think that we should care for animals, but spending fortunes on them makes me feel a bit uncomfortable, especially when you weren't told about the problems in advance. I hope it works out between Mollie and Archie!! You're obviously a really caring person to take this on.
I'm feeling much better all of a sudden! I can eat bigger portions of rice and pasta, and have started to have a few small portions of very soft carrots and tinned peaches, (which I usually don't buy), and I've put on about a couple of pounds, mainly from full fat milk and creamy yoghurts. I'm still taking big doses of Lansoprazole, which worries me a bit, but the rheumatology consultant seemed to think it was ok for a while. I just have to trust her.
Enjoy a bit of a break before the next part of your sacral nerve implant journey, and keep well.
Love and hugs xx
Hello KatieAnna
So pleased you are feeling better and able to eat more, life more a pleasure, slowly & hopefully surely. I've never had a huge appetite or really much bothered about food, it's a necessity, tho do have to say it is a treat sometimes to look forward to something special to eat, or a meal out in a nice restaurant. Fingers & toes crossed you continue to recover fully and very soon.
Tinned peaches is something I never buy, I think I've a lovely recipe using tinned peaches from the MacMillan (sp?) cook book, will dig it out. I have full fat greek yoghurt (bio live) & clotted cream everyday, my low carb diet; no milk, the lactose is high carb and milk doesn't agree with me, never has.
Such a shame we are at different ends of the country. When my innards are sorted I'll be ooop North to visit family in Yorkshire & I've a Geordie friend I really want to see up your way. Perhaps we can meet & compare notes!?
Glad you are able to enjoy the grand children. I don't have any of those, always been a horse, dog, cat, donkey, sheep, ducks, geese, chuckies, pretty much anything with four or two legs with fur or feathers type of person. I have three younger brothers, that put me off producing any of my own!!
Yes Grumpy Nurse was at my Oxford appointment last week, damn, & she'll be at the next trial I expect. Hey ho.
Little mut Molly has settled like she's lived here always, the sofa is now her spiritual home. Archie tad put out, jealous, he's very tolerant, so long as only he sits on my lap and he has total control over the inside of the Landy, that is his domain.
Thinking of you, good luck and continued recovery.
Love & hugs, Sally x
Hi Sally, thanks for the lovely wishes! I'm really improving every day, which is much more than I expected after seeing the consultant. She seemed to think that this was going to be a long term thing, although maybe I still need to be a bit cautious.
I'm pleased that your new little friend is settling in happily. It must make you happy to see that she's confident with you and Archie. You sound like a true country woman! I'm definitely a townie, but I do enjoy visits to the countryside and coast. We live close to all those beautiful tourist attractions that are advertised in the NE.
It's a shame that grumpy nurse is still in your life, but I get the impression that you can tolerate her more easily now that the consultant is willing to help you.
It would be good to meet you when you visit up north!
I hope you keep well during the wait for your next trip to the hospital. I'm praying that everything will go well and you'll get the implant soon.
Take care of yourself and your pets. Lots of love xxxx
Hello KatieAnna
How are you? Hope your problems are improving, and Covid-19 virus stays out of your life and your family's. The speed of spread unbelievable. The fall out concerns me, panic food buying so unnecessary. I went into Morrisons yesterday evening just to see what was available. Loads of salads, fruit some veg, loads olives & more obscure food stuffs. The flour isle completely empty apart from flour spread about, looked like a fight had ensued!
I'm not completely self isolating, taking dogs out, occasional visit to farm shop for provisions, food for dogs.
I've colonoscopy next Tues with general anaesthetic. It's still on, at the moment.
Hope your stimulator still working as it should. No idea when my 3rd trial will be, suspect some time distant with the Covid-19 pandemic.
Really hope you are well & continue to improve. Keep healthy.
Love & hugs x
Hi Sally, I'm currently in isolation as my granddaughter has symptoms of coronovirus and we were with her before we realised. It's hard not to see people, but we're managing fine, and she's doing well. I hope your colonoscopy goes ahead on Tuesday, and that everything is fine so you can go ahead with the next trial. It's such a frustrating situation for you. My implant is fine and working well, which is good and I'm feeling much better now. Roll on the day when you get yours!!!
Stay as safe as you can and avoid all busy places. Lots of love Katieanna xx
Morning KatieAnna
Oh I feel for you and your current situation. Really hope your granddaughter has mild symptoms, recovers very quickly, and you stay virus free. Self isolating not for the feint hearted.
I'm not completely self isolating, I still walk the dogs on Salisbury Plain most days if I can, tho slight blip with the Landy snookered me abit, won't bore you, suffice to say I'm having to use my little "run around" VW at the moment, not ideal.
My neighbour is in his 80's so helping him get supplies if I can, getting more & more difficult due to the selfishness of panic buyers. Crazy.
My fridge freezer died a few weeks ago, Hotpoint man came last Thurs to fix, not fixable, damn, a new fridge freezer required. John Lewis sold out of 99% of all fridges & freezers, Argos likewise, nothing in my area delivered or available to pick up. Selfish people buying 2nd unit to hoard.
I'm symptom free, hopefully stay that way. Wiltshire has few identified with Covid-19, seven at the last count I believe, two of those in Swindon, about 45mins/1hr away, tho there will be others that are totally unaware they have it or have had it.
Sorry it's taken 3 days to respond to your news, my poor little Dogs Trust mut Molly is suffering with her abscess problems, vet visits, and a cardiogram last Tues, she has to have medication for life. We seem to be on top of it all now tho surgery may be necessary to remove sutures that have not dissolved due to a previous procedure.
My colonoscopy next Tues was cancelled yesterday quite late on, 4pm, I'd expected it. No idea when that will be rescheduled, & obviously no idea when I shall see the Oxford team again, it could be months. So pleased your unit is working well and you are improving, well done.
Love & "virtual" hugs,
Sally x
Hi, I'm really sorry to hear about your fridge freezer. How are storing food? I thought that this unfolding crisis would have made people less selfish, but obviously it and now the cafes etc are closed the demand for supermarket food will increase.
We're fine and symptom free, and my granddaughter is well. It's very hard not to be able to see her!
Your little dog is very lucky to have found such a caring person to take her in and care for her. I hope she responds well to the meds.
What a shame about your colonoscopy! I know you expected it but it must have been very disappointing. I suppose that emergency medicine is taking priority over all the rest. Are your symptoms the same? We learn to accommodate some things that other people would be horrified to know about!!
Take care and stay safe and well. Love and prayers xxxx
Hello Katie Anna
How are you? Such a long time since we've communicated. I really hope you are healthy, SNS is working as it should, and your family are well.
All is well here, tho somewhat bored, not allowed out now, I'm on 7 days self isolation, I had CT scan on 30 April for oncologist, seems I may have picked up a bug from hospital which is bizarre as it was completely empty, no people in atrium or corridors, bit spooky. Saw 2 medics in CT dept, that was it. Ah well, symptoms very mild, GP very helpful, symptoms fit with Covid. I may or may not have it, probably will never know. I'm allowed out next Tues, can't wait. I feel fine, "normal", whatever that is!
I had to take little mut back to Dogs Trust on 2nd April, she attacked my dog 3 times, unprovoked, savage, he became frightened of her. Very sad.
Let me know how you are. Really hope all's well in your world.
XX
Hi Sally, it's lovely to hear from you. I was actually thinking of you today and had planned to message you!! I'm sorry to hear that you have had symptoms and have been self isolating. I got the shielding letter from the NHS so have to stay at home for 12 weeks. I think that's to the end of June. I'm grateful for the garden and the recent lovely weather.
My gastritis has flared up a few times so my diet is pretty limited but apart from that I don't have any symptoms of the virus, thank God. My stimulator is working fine and I really hope you get the colonoscopy ss quickly as possible now that the hospitals are starting to do routine tasks and treatment again.
It's a shame about the little dog having to go back, but sometimes you just have to accept that there are things you cannot change. You have to protect your older dog from harm.
Take care and enjoy getting back to going out again after the isolation. If it was coronovirus then you'll have immunity, but you need a test to find out!!
Stay safe! 😂 Xx
Lovely to hear from you, glad you are not afflicted with the virus and that SNS is working well. What a pain you're isolating for 12 wks, I hope you're not on your own, tho it is so difficult if you have others in the household who presumably have to isolate with you.
I help someone who's shielded, get provisions etc. I need to check with GP surgery re how long I have to avoid taking shopping to this person, suspect it's longer than 7 days, perhaps 14. It would be useful to have a test to see if I actually do have or have had Covid and also a test to see if I have antibodies. GP surgery has a testing Hub in the car park.
I've not had any symptoms since last Weds/Thurs. It may be "famous last words" tho since having ME for quite a few years my immune system has been top notch, I very rarely catch anything and if I do it's all over & done with very quickly. Many with ME have reduced immunity, some have enhanced.
Verbal diarrhoea here! That's what happens when no one to talk to & no social interaction. Crazy mad lady.
keep healthy.
XX
Hi, I know what you mean about the isolation making you think a lot. My husband is here with me and so I have a sounding board, but we run out of conversation at times. I'm glad your immune system is good. I stopped taking the immunosuppression meds in December so I expect mine is normal again, but the doctors are shielding us because our immune systems are already attacking us and might go wild if the virus stimulates a huge immune response,which it does in the lungs and kidneys of lots of the people on ventilation.
I'm fine though. This will be history soon.
I hope you do manage to get tested and I'm glad your symptoms have improved.
It's great that you can help your friend with shielding jobs.
Take care and lots of love xx
How are you? I forgot to ask if your gastritis is improving? That must be frustrating, I hope it isn't painful.
I'm starting a Fast next week, had a phone call from Salisbury to go in on 26th May for my colonoscopy. Picolax for two days, yuk. I go 2 days before for a covid test. Procedure's with general anaesthetic so I need a driver to & from, usually I'd have to have someone with me for overnight tho recovery is much quicker with general anaesthetic than with sedation apparently, so they're ok for me to be on my own, with the dog. Goodo.
Immunosuppression meds must be very powerful, amazing how they are discovered, developed etc. I'm borderline limited scleroderma so perhaps my immunity is not compromised to my detriment. I didn't know some folk on ventilators suffered huge immune response in the lungs & kidneys. The body is a wonderful thing, we don't realise how it keeps healthy & how.
My oncologist rang, lovely lovely lady, I look forward to speaking with her, she doesn't judge or assume us patients are idiots & know nothing, she listens, offers encouragement, very pragmatic. All's clear.
Devizes Covid 19 volunteer group have asked me to help if I can, I'm happy to if I can in any way.
Really hope you & your family stay well, is your granddaughter well? I think you said she had symptoms awhile ago.
Shutting up now, verbal diarrhoea again!
My friend from Hartlepool rang, she's a real hoot, makes me laugh, lives local to me here, she & hubby had covid, survived, tho not pleasant.
Love to you & your family,
XX
Hi, that's great news from the oncologist, but a bit of am ordeal for the colonoscopy. I hate the picolax, but once it's over, hopefully you'll be ready for the stimulator!
It's good that you can volunteer and help people. I feel like I'm wasting the days when I could be helpful, but I'm being patient. My granddaughter is fine now, and only had mild symptoms. It would be useful if she could get tested to see if she's had it. Hope your COVID-19 test is clear.
My gastritis is variable with some bad days, but also some better ones. I have to take the high dose of PPIs for a while to see if it'll calm it down. I have blood monitoring on June 1st to see if my liver is being affected by the meds.
I agree that our bodies are amazing and they're good at healing themselves too, given optimum circumstances. I wish you well with the fast.
Take care and let me know how things go x
I’ve had an SNS in for about 10 years now , & have had battery replaced as well. My stools are generally very soft so still get leakage but nowhere near as bad as it used be. Just need to make sure I have spare pads & wet toilet wipes . Finding the right settings etc is the hardest part but once settled I don’t notice it at all. My issue is also because since I had it done I also had to have right side of bowel removed due to a massive growth, I find everything is a balancing act but SNS does help me.
Sorry taken me so long to reply, thank you for the info. I have another trial approved tho no date yet as I've to have another colonoscopy on 24th March with general anaesthetic as its too painful to tolerate without.
Fingers & toes all crossed it goes well & I'm allowed a permanent stimulator. I was in clinic several weeks ago in Oxford, the lady next to me had just had the very latest stimulator inserted, the battery is rechargable, and MRI scans can be done.
Good luck with it all. Thank you for responding.
Who has problems with their mouth with Scleroderma?
Does anyone suffer bowel problems....
