Colon transit bowel motility test/study for chronic constipation/ biofeedback therapy/anorectal physiology investigation

[Snowy13]

Hi all

I have been fortunate to see a very understand, compassionate consultant who has finally listened to my experience with chronic constipation (I take 8-10 laxido a day, 4 docusate, 4 Senna, a suppository every other day and occasionally picosulfate and still find myself having little urge to use the toilet).

He has referred me for a bowel motility study, I took the capsule today and have my X-rays on Friday. I just wonderd if anyone has had these before and what happens afterwards depending on the outcome? We are expecting most of them to still be there. I am then having some kind of nerve testing at the end of the month, I think it’s called anorectal physiology investigation and biofeedback therapy - again any info would be welcome!

Thanks xx

[AmandaJW]

I had the colon motility study and it showed that my colon was severely slow, 95% of the markers showed up in the final xray. The surgeon decided to operate, the first op was ok but the results were a but hit and miss so he opetated again, the surgeries have not been without their problems but I do have a bowel movement everyday now. Before the ops I used to go up to 5 weeks without a bm so I had no choice but to have the operations.

[Snowy13 in reply to AmandaJW]

Thank you for replying, I wasn’t sure what to expect. I stopped my laxatives Friday so I don’t think I’ll go to the toilet before my X-ray as I find it near impossible without them! Were you on/are you now on any? I am frightened of surgery but if it is the only option for a normal functioning bowel then I think it is worth it isn’t it. X

[Clairesmyth in reply to Snowy13]

Has your Gastro tried you on Reslor ? (Prucalopride? ) Mine has it worked with one Laxido but costs about £72 a month so many very reluctant to offer this, GP cannot offer due to cost, strangely I got so much better when I just ate super healthy too, not much better but worth it xx

[Snowy13 in reply to Clairesmyth]

No, the consultant has prescribed it for after my tests as he wants to rule out underlying causes which is good! Would love to be able to take less laxido. I do eat really well, loads of water and plenty of exercise etc so I can’t do much more lifestyle wise sadly xx

[Clairesmyth in reply to Snowy13]

Well I hope you get some answers soon, it all feels like such a long process I have to see my consultant again on 6th December for next steps , had Proctogram, Colonic transit study, colonoscopy, scans, the reslor is good and my Gastro gave me it and then said just stop a couple of days before my tests. It does give relief, I couldn’t drink that many laxido because of the bloats it gives me. Good kick and let us know how you get along xx

[Clairesmyth in reply to Clairesmyth]

Luck! Not Kick 😬

[Snowy13 in reply to Clairesmyth]

What is a proctogram? Yeah I get horrid bloating but laxido is the only thing that seems to give any relief. How I’d love to be like my partner who poops like clockwork, almost to the minute twice a day! What a thing to feel envious of lol x thank you I’ll update on Friday xx

[AmandaJW in reply to Snowy13]

I was on every type of laxative available but still found it difficult to have bm's, in the end I was having to drink 12 litres of klean prep a week to have bm's. It got to the point where I couldn't do it any longer and had to keep being admitted to hospital to have a nasogastric tube fitted and the klean prep went through that. Now I use 2 sachets of klean prep and 1 cleeneama daily it goes directly into my colon using a catheter inserted into my stoma and then I go to the toilet normally. My stoma only works one way, nothing comes out of it, it's not perfect but it has made my life easier.

[Clairesmyth in reply to AmandaJW]

What was the surgery you had Amanda? I have Slow Colonic transit , discovered with the same test , I also have a large Rectocele. I am sure they will want to operate as that’s what the radiographers said when I had my Proctogram but I am so anxious, I don’t want to end up with a stoma. Not sure I will cope with one . Much love xx

[AmandaJW in reply to Clairesmyth]

The first surgery is called Ace Malone procedure, a stoma is created but it is only one way nothing comes out of it. You insert a catheter into the stoma and flush in liquid laxatives and then you go to the toilet in the normal way. The second surgery I had was a sacral nerve stimulator implanted at the base of my back, leads are connected to the sacral nerves to stimulate the intestines. I can control the stimulator with a small hand held device. It's not 100% perfect, I'm still on medication and use laxatives daily but my quality of life has improved, however it does need commitment because at the beginning it does take up quite a lot of time but it does get easier.

[b1b1b1 in reply to AmandaJW]

You have been through a lot, and I am glad it has gotten easier. x

[Clairesmyth in reply to AmandaJW]

Thank you for sharing Amanda , wa sthere a big recovery with the Ace malone proceedure?

I hope life is getting better for you x

[AmandaJW in reply to Clairesmyth]

The recovery from the actual op is not to bad, I took 6 weeks off work. The problem is getting used to doing the flush everyday, testing what amount of laxatives works, how long it takes (at the beginning I was sat on the toilet for 4 hours, I hated it), another important factor is deciding what time to do it, it's best when you do it at the same time each day. Initially I was doing it in the evening but it meant I was going to the toilet all night, at most I was getting 2 hours sleep before getting up for work. I then tried the mornings but the problem was I had to get up at 4am to get it finished before I went to work, I couln't risk any accidents in the car. I did this for 4 months and it stressed me out, I went to my gastro doc and just broke down in tears, he advised me to work part time and to the flush when I get home after lunch. At the moment this is working really well, I start the flush at 2pm, it takes an hour for the solution to run in and then I keep moving round for another hour to make sure I'm fully emptied. I wasn't happy about having to work part time, I love my job and studied and worked hard to get to where I was career wise, so it was a big loss for me, I've accepted it but I'm not going to lie some days I resent having to do the flush. You also have to learn how to insert the catheter, you are supposed to take it out after each use but this didn't work for me, the stoma was sore and it would bleed, sometimes it was difficult to insert. The whole process would stress me out before I even started the flush, I discussed it with the surgeon and he said I could leave the catheter in but change it every three weeks. All in all it took 18 months from the op to get things sorted out but don't let this put you off, everyone is different and for some it's a lot easier. The problem is there is not much information or support available, this op is used for kids, and only recently used for adults so I can't talk to others to see how they are getting on. I live in Ireland and at the moment there are only myself and 2 others you had the op.

[Clairesmyth in reply to AmandaJW]

Crikey Amanda, it sounds like a tough time for you. It is awful that you have had to suffer so much for something that most people take for granted. I hope things get better and one day you can pursue your career and get back to work full time.

Thank you for sharing such intimate details with us, You sound like a strong woman and I appreciate your honesty xx

[AmandaJW in reply to Clairesmyth]

Thank you for your kind and supportive message.xx

[Snowy13 in reply to AmandaJW]

Pleased you have got a better quality of life, it sounds like you’ve had some really tough times. Hope it keeps improving xx

[SlowT1 in reply to AmandaJW]

Hi Amanda

I read your post with interest. Thank you for sharing as I’ve found it really insightful.

Has either the ACE or nerve stimulation helped with stomach pain and bloating? I have slow transit which is making life miserable. I have tried prucolopride and wish I hadn’t! It worked well to start with but I’m convinced long term it’s made pain and bloating worse. I’m now taking dulcolax liquid which does help with BMs but it causes me to have to rush to the loo so I can’t take it when travelling, working away, etc. It also gives me horrendous stomach pain all the time.

Xxx

[AmandaJW in reply to SlowT1]

It does help a little but it doesn't eliminate it. In the past before the ops I was bloated 24 hours a day and in pain. Now I only bloat straight after meals along with moderate pain and this eases after a couple of hours. My surgeon made it quite clear from the beginning that the operations would only help with the constipation and bloating and pain would still be an issue for me because of all my disgestive issues. However if your pain and bloating is only linked to constipation then there is a greater chance that the operations would help both. I still take a lot of medication for bloating and I have to keep having it changed every 6 months because my system gets used to it, I've been given every medication availble, now I'm on Mestion which is supposed to stimulate the intestines, it's early days yet so I'm not sure how this med is going to work out.

[SlowT1 in reply to AmandaJW]

Thanks for the reply Amanda. I too am bloated 24/7 and it gets worse when I eat. Your reply is really helpful. I’d be interested in hearing how the mestion goes. I saw a consultant last month who told me to try taking duloclax liquid again just in higher doses but said if that didn’t work to try pyriodsigmine which having googled ‘mestion’ I thin it’s the same thing.

[Hidden in reply to SlowT1]

Vitamin B12 might be able to help. B vitamins are involved in maintaining healthy nerves, including those in the intestines. You should try B-complex injections before all these invasive surgeries. It does take months to recover nerve neuropathy. Read this article:

healthunlocked.com/theibsne...

[SlowT1 in reply to AmandaJW]

Hi Amanda

Hope you don’t mind me asking how you are getting on with the mestion? I am thinking of trying it but am cautious to try new medication x

[AmandaJW in reply to SlowT1]

I have had to increase the dose, the first 3 months I was on 1 tablet a day now it's 2 a day because things had started to slow down again. It has made a difference but I don't think this is only due to medication, I've had to cut all grains out of my diet. My diet's complicated, it's vegan, keto & fodmap, I make everything from scratch no processed food and I've swapped green tea to ginger & lemon. Just one word of warning about the medication one of the side effects is that you can feel and see your nerves twitching under your skin, it's a strange sensation.

[SlowT1 in reply to AmandaJW]

Thank you Amanda. Twitching nerves does indeed sound strange. I’m currently trying Mag07 but need other laxatives with it. I may persist with this before the mestion x

[Hidden in reply to AmandaJW]

Vitamin B12 can help restore the health of nerves that have gone dormant if the problem is mild or moderate. In your case it might help, though it might not be a cure. Removing those devices from your body might be possible. Read this article:

healthunlocked.com/theibsne...

[AmandaJW in reply to Hidden]

Thanks for the article, I look forward to reading it.

[Hidden in reply to AmandaJW]

5 weeks without bower movement? This is extreme. Did you mean 5 days? Do you have any other symptoms or any other diseases?

[AmandaJW in reply to Hidden]

Yes, it was 5 weeks I had to be hospitalised. I have no motility in my colon.

[Hidden in reply to AmandaJW]

I really hope they have some sort of solution for this. I've read some articles here about diarrhea and this is the other difficult extreme.

[Clairesmyth]

Thank you both for sharing , Snowy; Proctogram is where your Pelvic floor is x rayed whilst you pass on a toilet!

It’s really not a nice process but needed .

[Snowy13 in reply to Clairesmyth]

I am not a stranger to somewhat undignified tests (bowel complaints since a baby and endometriosis mean that there is little of me that hasn’t been explored by gloves hand 😁🤗 gotta laugh or you’d cry, right?!) but that one sounds truly horrifying! But yes it is all needed to get the answers we need. I am struggling a little with feeling bloated, uncomfortable and full due to not taking any laxatives, looking forward to Friday so that I can take them again. I have passed some very small hard stools, it amazes me how quickly that I “block up” - took 16 laxido and two suppositories just last Friday as I knew I was going cold turkey. Did you go to the toilet at all during your laxative free period before your X-ray for the motility test? Xx

[Clairesmyth in reply to Snowy13]

Oh the test was awful, first a jug of barium infused water, then a suppository, then they insert a catheter and fill bladder with barium, then you vagina with paste and then insert a mixture that makes a barium paste in your back passage, they say right hold it in an Jump on that toilet without it coming out , they tell you when to push and when to stop, you see it on the screen it’s just Beautiful! 👌🏻No I didn’t go at all before my Colonic transit study, 100% of the markers remained I have just got the results from my Proctogram, Large anterior Rectocele with associated barium cystocele and vagina prolapse! I’m delighted ( NOT ) because this is all caused by years of Chronic Constipation!

Looks like pelvic floor surgery for me but they won’t do that unless Constipation is fixed else it will just re occur !

[Hidden in reply to Clairesmyth]

Chronic constipation requires reactivation of atrophied nerves to start producing peristalsis. Get vitamin B12 and a multivitamin and antibiotic recovery therapy if you have used antibiotics between the time you were healthy and the time your constipation started. Here a link that proposes an IBS cure:

healthunlocked.com/theibsne...

[Hidden]

From what I've read, nerve atrophy in the intestines is basically the same as neuropathy in the hands and feet where you would feel numbness (if you had such a condition for example). This causes mostly constipation but also the sensation that you need to go to the restroom because some nerves don't work and others are working extra since the stimulating fecal matter is not moving. Here is an article that explains how this works: healthunlocked.com/theibsne...

[Snowy13 in reply to Hidden]

Thanks, that is really interesting! I still haven’t received the results of my sitz marker test, but have had the others via my gp re nerve sensation etc and I have very little sensation in the final area before evacuation occurs, which makes a lot of sense as to why I get badly constipated but rarely get an urge to go until there is so much there that my body recognises it! Will read the link with interest. When they did the balloon test thing I didn’t even know she was doing it until it got to maximum capacity and I felt a tiny tickle!

[Ash24601]

Hi,

I’m new here and have had similar symptoms. I had my sitz marker test today and could see them all along my left side. I’m surprised it made it that far tbh, I’m worried this may be considered “normal”?