# It seems I'm ileostomy bound but constella first



## Marv72 (Sep 29, 2013)

Evening all, hope everyone is feeling well this evening
well I've seen my consultant today and i have been prescribed yet another drug to try, this time it's one called constella, apparently it's only been on the uk market for about month. If this does not work than it's an ileostomy for me. I've to give the new tablets 2 weeks to kick in but in the mean time I'm being referred for a ct scan and also for a small bowel transit test (whatever that may be)in preparation for the surgery. Although I'm told that if my small bowel isn't working then an ileostomy wouldn't do me any good anyway . I'm hoping this new set of tablets will work but as I have tried every other thing on the market I'm not really expecting very much.
Although I have been talking and thinking about an ostomy for around two years now, I have to be honest and say that actually hearing the words from the consultant made me quite emotional one way and another.
If anyone out there is happy to give me their experiences with ileostomy I would love to hear your advice and any information you may have
Any information and experience from others would be gratefully received
Many thanks in advance


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## annie7 (Aug 16, 2002)

Marv

i do hope that constella works for you. i take it from time to time --over here in the usa it's called linzess. i find it works best for me if i take it WITH food--a warm meal with a bit of healthy fat in it--instead of taking it as prescribed which calls for taking it a half hour before meals. when i took it like that--before meals--it didn't work. but when i take it with food i get diarrhea on and off for about six hours. not ideal but it's good for a clean out. i don't take it every day. but we're all so different in how our bodies react to meds. constella is definitely well worth a try. it does help a lot of people.

if constella doesn't work for you by itself, try taking it with movicol (miralax here in the usa). many people have found that it works best for them when taken like this.

i've been considering an ileostomy also for about a year now although my gastros and surgeons have been a bit discouraging about this. there is a terrific ostomy board online right here:

http://www.inspire.com/groups/ostomy/

it's a very upbeat and helpful board--lots of caring people there who will be glad to help you with any questions you may have and tell you about their experiences. i have been reading this board for about eight months now just to get a realistic idea about what living with an ostomy is like.

good luck to you. wishing you all the very best in whatever you decide to do.


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## Marv72 (Sep 29, 2013)

Once again thank you for your input, I must admit I'm finding that on this site no body seems to reply to posts, at least not very often or maybe it's just mine

I'm going to take a good look now at the ostomy boards and try and gather as much information as I can. Funny what you say about yr consultant as mine isn't thinking twice about doing the op, if tablets don't work then surgery it is she said, just like that. Strange how they all differ in opinion so much

You have been such a help to me after finding this site and I notice that you try and help as many people as you can. I only hope that you get the help that you so clearly deserve


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## annie7 (Aug 16, 2002)

thanks so much, Marv, for you kind words and good wishes--much appreciated!









yes you are so right. the gastro docs and the surgeons do differ quite a lot in their opinions. i don't think some of them really understand how much pain and misery we're going through not being able to have a proper bm--or any bm all--and having to take laxatives which make us feel sick and don't work well anyway. i am glad your consultant seems to understand all this and is proactive about helping you. you've tried everything and been through so much misery and pain. you've suffered enough.

the people on the ostomy board are very friendly and helpful. everyone does say they feel so much better after having had their ostomies. there are people on there who have had an ostomy due to severe constipation and pelvic floor problems and they say they feel so much better now. and there are all kinds of tips and tricks to managing the bag.

after the surgery you'll have an ostomy nurse who will be very helpful and supportive and show you how to take care of the bag and answer all your questions and of course everyone there on the ostomy board will be happy to help you every step of the way, it's a very friendly, talkative board.

good luck to you. and stay in touch if you get the chance. feel free to private message me if you want. annie xx


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## bbrad_98 (Jan 26, 2014)

LOL! And I thought I was the only one whose posts didn't generate replies. When I finally got the nerve up to join and post for the first time, it was so disappointing to get 0 replies. I guess some boards are more active than others.

I have used Linzess. My doctor gave me samples without instructions, so I tried it first with a meal. It produced explosive diarrhea. That wasn't very convenient, so I stopped. After going online and getting the directions about taking it 30 minutes before meals, I tried that with no success at all. Still having problems, I went back to my doctor who advised me to try again. I did and for some reason the 30 minutes before meals started working for me. Initially I had diarrhea. It gradually got better with more solid stools. After several months, my stools were normal and daily, then every other day, etc. After approximately 5 months, Linzess stopped working for me. I hope that Linzess works for you, but if not it sounds like Annie7's group will have lots of good information for you.


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## Marv72 (Sep 29, 2013)

Hi brad, funny isn't it how some posts get loads of replies and others nothing at all
Can I ask you more about yr use of constella/linzess?
I wonder how quickly the diarrhea hit you, my problem is, is that I work full time for a very small company and I'm struggling to get some time off. Because of this I daren't take the tablets until I know I'm at home and don't have to worry about leaving the house. I cannot afford to not keep turning up for work. I'm already on the verge of loosing my job thru all the time off I've needed in the last 3 years 
How long did the diarrhea last for, are we talking hours or just a small amount of time?
And how long did it take for things to be more normal? I realise everyone is different but I'm interested to hear yr story
Now that it no longer works for you, what is your next step if any?
Many thanks
And Annie once again, thank you


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## bbrad_98 (Jan 26, 2014)

The explosive diarrhea only happened when I took Linzess with my evening meal. That happened within 30 minutes of taking the pill and continued for maybe 1.5 - 2 hours. When I took it in the morning, I had a liquid stool within 45 minutes at most. I might have a stool later in the day as well, but nothing unmanageable. Like you, I work full time and cannot really afford to miss work. My stools gradually got firmer. That might just be a symptom of my continuing problem. Nothing seems to work for long with me. It took a few months for the stools to become solid, but there was no discomfort with the less solid stools. Overall, I was pleased with the results from the Linzess and would still be taking it even if it gave me liquid stools if it hadn't stopped working. Could you try your constella on the weekend (or your day off if you work varying schedules) to see how it affects you? That way you could decide whether to use it in the morning or in the evening.

I found a book entitled "Gutbliss" at my library. It's by a gastroenterologist who uses integrative techniques to treat gastro issues. It suggested using a teaspoon of psyllium fiber in 8 ounces of water followed by another 8 ounce glass of water 3 times a day for people with constipations who had diverticulosis, which was observed during my colonoscopy. I gave it a try, added a digestive enzyme to my meals, and started eating a spinach salad every day. This seems to be working okay for me for now. I'd love to figure out what is causing the constipation, but I've tried eliminating medications (the last time something like this happened that was the problem) with no luck. I just can't figure it out.


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## Marv72 (Sep 29, 2013)

Thank you for replying so quickly  I think your right I might just try the constella on my day off next week and see what happens. I'm hoping to god this works for me as the more I read about ileostomies the more panicked I become, seems a May be swapping one nightmare for another and if that's the case I can't see the point in going through with what seems like major surgery.
Best of luck to you, I hope you find something that continues to work for you and thank you for making the time to give me your help and advice


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## annie7 (Aug 16, 2002)

HI Marv

yes i do hope linzess (constella) works for you.

i've heard gastro docs say that when you first try it it's best to do a cleanout first if you're all backed up and constipated. after the cleanout, then start linzess (constella) that'll give it a better chance to work.

and like i said, if it doesn't work at all on you after a few days' trial you can try taking it along with either miralax (movicol) or milk of magnesia, or lactulose. some people say this really helps. and i know other people also take it (with their gastro's advice) along with a stimulant like senna. so there are various ways of tweaking it if it doesn't work for you all by itself.

take care--wishing you all the best.


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## annie7 (Aug 16, 2002)

yes i know it does all seem a bit daunting at first, reading about ileostomies and changing the bag, maintaining it all etc but really it does all fall into place. one day at a time. there are all sorts of tips and tricks for everything.

everyone does say they feel so much better after having had the surgery. no more constipation pain, misery, nausea, bloating. no more struggling daily to have a bm or none at all..

you'll get great help and support from the stoma nurse (over here they are called WOCNs) who will be helping you with everything after the surgery.

and hopefully you won't need surgery---fingers crossed constella helps!


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## Marv72 (Sep 29, 2013)

Good evening Annie, I just wanted to say I massive thank you for directing me to the ostomy boards , I have been on the boards for hours today and taken down a mass of notes so I shall soon be an expert haha

Also you were quite right, I put a post up and within a very short time I received many replies and the guys over there have been amazing, so once again thank you and I hope other people on these boards and indeed yourself realise how invaluable you are

Your help and advice to me has been fantastic

Best wishes to you


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## annie7 (Aug 16, 2002)

oh thanks so much, marv, for your kind words--that's so nice of you!









and i am so very happy to hear you got a good response and help on the ostomy board! yes, they are a wonderful group of people aren't they! so supportive and helpful and full of good advice and tips. i have a notebook of my own i started a while back just in case i go that route. they've helped me with some of my questions, too. it's really a comfort to have one's questions answered and to know there is a way to cope and manage everything and also to have all that caring support and advice.

and best wishes to you as well. keep me posted if you get the chance. and take good care fo yourself annie xx


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## Dreamcatcher32 (Nov 12, 2013)

Have you been checked for Pelvic Floor Dysfunction? If this is in fact something you have, then biofeedback therapy needs to be done, along with balloon expulsion testing and therapy.

Linzess works okay but makes my colon go crazy, so I don't really use it. Everyone is different. I find just eating a very balanced diet (fruits inbetween meals, along with juices, coconut oil, olive oil, molasses and tons of smoothies with roughage and fruits) works really well. This is all just as good as taking some 'medication' to even things out. It will even give the 'runs' if you coordinate things right. No you won't get to eat everything you want to but at least you'll avoid major surgery. You'll also want to consider fiber, unless you've got inertia... then not so recommended.

There are honestly a ton of things you can try: Miralax (it's in the US - you can order this online I am sure), Fiber gummies and supplements, probiotics, Herbal laxatives like Senna and Cascara, John Shulze Formula #1, Oxypowder, Milk of Magnesia, Stimulant laxatives, etc. I would honestly go with the diet change though. Stagger the oils and fruits appropriately and remove all breads, rice, peanut butter, chocolate, absolutely ANYTHING even remotely constipating. What constipates you might not constipate someone else. For instance - dairy constipates some and REALLY gets things moving for me.

If you DO have to get an ileostomy because it's frankly life or death, then it's just something you'll have to come to terms with. Being upset and even devastated is perfectly normal in this situation. I would just be sure that you're dealing with the best surgeons you can find, even if that means flying to the states. It is a MAJOR operation. You'll still have to deal with the diet issue because 'blockages' are a major concern. You'll be on a strict diet then too.


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## Marv72 (Sep 29, 2013)

Hi dream catcher, I'm afraid I have had both bio feedback and the ballon testing as well as every other test and therapy out there. For some reason my colon has just completely given up. It doesn't matter what I eat or don't eat,drink, what meds I take or anything else, nothing works for me, I only wish it would. I also have severe bladder problems, a rectocele and intrussuption .

Such is life and my goodness it certainly throws us some problems, what doesn't kill us makes us stronger so they say!

Thank you for taking the time to give me your help and advice, I really appreciate it


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## Dreamcatcher32 (Nov 12, 2013)

I just want to give you a little hope here - I HAVE heard of many cases where the colon seemed to 'quit' working and then it started working again. I've heard about it pretty frequently, in fact. I would give it time and try other methods and then if worse comes to worse - go for the ileo. Perhaps a temp? I have heard a lot of people can lead perfectly healthy and normal lives with ileo's. The surgery is just very very difficult and I was told by Mayo, "Trust me, you do not want that surgery." I would make sure to give absolutely every laxative on the market a try before going with the ileo. It sounds like you have quite the positive attitude and this is going to help you along the way! Good luck to you! Keep us updated on your situation.


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## JulieWhite (Aug 26, 2014)

Hi I have been using constella for about 6 months now ,UK doctor had only just heard of it when I asked him for it ,it didn't work for me until the second week ,has been working until now , I take it inthe mornings and I would only have worked twice a week ( but that was great for me) I would have had loose poos and a explosion the first time I went , but after that just for 1/2 hours nothing that keep you in the bathroom, but this past week and a half nothing ,so I was just searching and came across this site , you have all answered my question about taking other laxatives with this one ,so I'm going to try what you have suggested . Hope it works ok for you , the relief I got was amazing , no more blotting in the evening .i also take peppermint cap 2 daily, and spasmonal 3 daily. . Thanks good luck


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## annie7 (Aug 16, 2002)

Julie---another thing i found out about taking constella (linaclotide--or linzess for those of us in the usa) is that the closer you take constella to eating--ie: 15-20 minutes before breakfast instead of 30 minutes or even immediately after you eat breakfast--or whatever meal--the quicker it works. generally speaking that is. like everything, your mileage may vary.

I found this out when experimenting with linzess and when I took it. i found that if I take it right after breakfast ( a warm breakfast with some healthy fat in it) , I have diarrhea off and on for about 6 hours or so. if I take it as prescribed, a half hour before breakfast, it doesn't work much--if any--at all.

I told my university hospital gastro doc about this and he agreed. he ran some clinical trials on linzess and found the same thing.

just another way to tweak it...good luck


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## JulieWhite (Aug 26, 2014)

Annie7
Thanks for the reply will try that today , 
Just so fed up at the min,
Fed up with my stomach doubling in size from morning to night ,
It's been making a lot of noise today ,also can feel it growling ,


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## annie7 (Aug 16, 2002)

oh I hear you--I get it too--the huge bloat and the gurgling....hate it...

good luck! hope at least one of these tips will work for you! take care...


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## Qw99 (Oct 3, 2019)

Hi Marv72,

I'm also from the Uk, 
Just wondering, whereabouts are you located? 
Is your consultant with the NHS?
As mine seems to be very reluctant on the idea of surgery


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