# still no closer to being well after ileostomy☆



## emmababe1 (Aug 8, 2015)

Hi all started my journey 17 years ago had no bowel movement s for 4-5day with swollen belly and pelvic pain.buy the age of 30 i was diagnosed with endometriosis and ibs jumping on many years later 2013 the constipation got so bad that i had no bowel transit this took another year to diagnose 2014 by this stage had to do enemas every 2days or the pain would be so bad that i would have to go to hospital so inbetween all this i got crohns disease in 2013
Appendix out 2012
Ovary out 2013
Other ovay 2014
Hysterectomy 2011
Now todate august 2015 they did a ileostomy in march but still in sever pain in right groin ,cannot sit up orwalk or eat without getting blockages i am stuck with the surgeon saying it is because i am on fentanyl patches☆and to get of them i am no closer to getting better and very fed up of my existence stuck at home my husband and children are very supportive but as you well now you hide it inside when you are in excruciating pain.i just wish it would end and they could determine the cause as nothing shows on scans


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## annie7 (Aug 16, 2002)

so very sorry for all you've been through. i do hope things get better for you. can you go to a pain management clinic or see a pain doctor to see if there is a way of controlling your pain that doesn't involve fentanyl or other opioids.

i will keep you in my prayers.


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## emmababe1 (Aug 8, 2015)

Thankyou annie for your kind words. At the stage where they have tried me on all sorts of pain meds to try control pain that i am doing it myself now with ginger,tumeric and hoepathic remidies just hope the are right about it being the fentanyl patches or i will have to find another specialist. Hope you ok xxx


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## emmababe1 (Aug 8, 2015)

Thankyou annie for your kind words. At the stage where they have tried me on all sorts of pain meds to try control pain that i am doing it myself now with ginger,tumeric and hoepathic remidies just hope the are right about it being the fentanyl patches or i will have to find another specialist. Hope you ok xxx


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## jaumeb (Sep 1, 2014)

If you have crohns you should read about the scd diet.


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## annie7 (Aug 16, 2002)

HI Emma

that's good you're giving the homeopathic remedies a try. i do hope that they will help relieve your pain.

about fentanyl patches and the blockages you are having---sounds like your doc thinks the blockages are caused by fentanyl? don't know if you've already tried this but there is a medication available called Relistor that is specially designed for this sort of thing--it counteracts the effects that opiods have of slowing down intestinal transit. you still get the pain-relieving effects of the opiods without the med slowing your intestinal transit down. there is another med like this too--movantik--not sure it is available in the uk but i know relistor is.

so if the homeopathic meds don't help your pain--and i do hope they do--you might want to mention relistor to your doc if he hasn't already mentioned it to you...it would help prevent the blockages you are having due to the opiods.

i am doing well, thanks for asking. i had colostomy surgery seven weeks ago, so now i no longer struggle with constipation due to pelvic floor dysfunction.

i do hope things get better for you. you have been through so much. take good care. annie xx


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## emmababe1 (Aug 8, 2015)

Hi annie thankyou for your kind concern ☆i hope you are starting to feel the benefits of surgery,i also have peliv floor dysfunction what did they say to you about it as i was told nothing.really hope that it will be a new life for you with lots of fun times.to be honest i am stage that i dont want to put any form of drugs in my body though i thankyou for your advice i will try just to battle through it even if bed bound i am a stubborn bugger wont be first time i had to go cold turkey of it before.at least this time i will wean of properly. You take care of yourself xxxx


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## annie7 (Aug 16, 2002)

i wonder if your pain is due to adhesions/scar tissue due to your previous surgeries. adhesions don't show up on scans except indirectly if they are having some effect on an organ or intestine such as pulling it out of shape or sticking it together. adhesions can also cause blockages...


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## emmababe1 (Aug 8, 2015)

Jaumed thankyou for your comment i will take a look .do you have crohns then?


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## annie7 (Aug 16, 2002)

...looks like we were posting at the same time...









my gastro docs and my colorectal surgeon all told me to try biofeedback for pfd. which i did for several years--two 8 week sessions of it plus i also bought a home biofeedback machine and worked hard with that daily for about a year. and i did make some progress with learning to relax my tight pelvic floor muscles. in the end, though, it just wan't enough because i also have rectal hyposensitivity and megarectum and biofeedback does not help with these problems.

i do understand about not wanting any more meds.. and yes, weaning can be very hard... i do wish you well with that. you are a very brave and a very strong woman.

good for you for not giving up. it helps to be stubborn -- i am too







we never give up!

thank you for your good wishes. i do hope that you will somehow find relief from all the pain and that you also will have some good times ahead for yourself..

take good care. xx


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## emmababe1 (Aug 8, 2015)

Thanks annie not heard about the biofeedback they did not say anything except that my pelvic floor was contracting when it shouldn't. I just think after 10surgerys its taken it toll on my body.what are the other dysfunction s you listed if you dont mind me asking as i have no muscle control in bottom not that i need it at moment with percy (stoma) yes if we were not stubborn we wouldnt find the strength to fight through these challenges. I have no problem comming of meds its just the excruciating pain he said in his notes their was no endometriosis, crohns or leisons i think .but if it does not start tailing of in a few weeks i will go to another hospital for second opinion ♡☆♡


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## annie7 (Aug 16, 2002)

in brief, rectal hyposensitivity means i cannot feel much of anything--didn't get an urge to go--no sensation or stimulus----in my rectum--and megarectum means my rectum is larger than normal. i can feel pain in my rectum, just never felt an urge.

yes all those surgeries could very well mean you have adhesions which, like i said earlier, do not show up on scans except indirectly if they are having some effect on an organ or intestine such as pulling it out of shape or sticking it together. adhesions can also cause blockages... yes a second opinion might be helpful.

i have adhesions from a surgery i had two years ago-- a hemicolectomy which was open abdominal surgery. at times i can feel the adhesions pulling and i also get pain--sometimes quite bad--especially when gas or stool is moving through my colon and small intestine. thankfully the pain does pass. i don't have it all the time.

good luck with everything... xx


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## jaumeb (Sep 1, 2014)

I am not a crohns patient but I follow the scd diet. I participate in the scd support group and read about crohns successful stories there.


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## emmababe1 (Aug 8, 2015)

Thanks annie 7 yea had alot of adhesions from surgery and endometriosis but i have ct scan this week so fingers crossed.just living on yogurt and ice cream crack me up because before this a year i was on modulen build up drink back to square one .but at least i am doing my hardest to get of fentanyl patches.you are such a brave lady and if i could would give you a cuddle♡ and good luck to you hunxxx


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## emmababe1 (Aug 8, 2015)

Thanks jaumeb spoke to dietician and she said have stay on jelly,yogurt,ice cream.sounds like a good group and i hope you are doing ok.


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## Jen37 (Nov 10, 2011)

At this point, is your crohns under control? I agree that it could be scar tissue that is causing you some issues. I am not sure what they can do for this though. I would think more surgery would just lead to more scar tissue building up. I am so sorry you are going through this. Are you able to drink any kinds of smoothies or fresh juices? This could be a way to get nutrients in you. You can get organic veggies and juice them or even throw them in a blender until they are literally liquefied as long as they do not upset your gut more. It may be easier to digest, especially if there is inflammation or any kind of strictures in your intestines. Hope you can get some relief soon. Hang in there..


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## annie7 (Aug 16, 2002)

Jen37 said:


> . I would think more surgery would just lead to more scar tissue building up.


right- -- with adhesions, more surgery unfortunately leads to more scar tissue. when pain from adhesions becomes very bad or if the adhesions start to adversely affect other organs and tissues, then a lysis of adhesions can be done but it's a last resort since it will eventually create more adhesions. they really are a beastly thing to deal with.

emma-- so sorry your diet is so limited right now. yes, hopefully you can manage some nutritional drinks like fortisips or modulen or smoothies or something that will give you more nutrition. unless your dietician says you cannot drink these things for some reason?

sending hugs and prayers your way. take good care, annie xx


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## emmababe1 (Aug 8, 2015)

Hi jen 37 problem is my crohns doesn't show in blood test and not been able to see a gi as been housebound and bed ridden for 2years i am still waiting to see a new gi but wont be till october.i am tolerating yogurt,lemon mousse,and marsh mellows,chicken cupa soup though had ice cream today man ouput has gone mental.also tried a banana smoothie and that increased ouput to 10 times really at loss scared will get dehydrated. Will try veg can't toerate fruit juices just aggrivates more. Thankyou for your kind words x hope you doing well ♡☆♡


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## emmababe1 (Aug 8, 2015)

Hi annie 7yea spoke to dietican she said not to take the modulen as it increased my ouput so much and because having scan on thursday said it would mess up the results.yes have had so many adhesions removed with the endometriosis maybe its just imflammed everything even my surgeon is puzzled♡hugs back to you hun you are so very kind and keep well xxx


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## annie7 (Aug 16, 2002)

emma--so sorry your output is so high. yes, please do take good care not to get dehydrated--you definitely don't need that and you don't want to eat/drink anything to aggravate it.

I've read that marshmallows can slow output...but sounds like you are eating those. also peanut butter, bananas, cream of rice, tapioca can thicken output but I imagine you already know that.. I do hope your output slows down.... so sorry.

please do take good care... hugs, annie xx


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## emmababe1 (Aug 8, 2015)

Thanks annie7 yea tried all the above hun but thank you anyway.you take good care of yourself as well ♡☆♡😄hugs xx


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## emmababe1 (Aug 8, 2015)

Thanks añnie 7 yea was trying all those foods .had ct scan so we will see i still think its imflammation dont now if that will show on scan ♡so have done 10days weaning of fentanyl so feel chuffed as pain was bad .hope you are ok thankyou for your replies xxx


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## annie7 (Aug 16, 2002)

congratulations on doing ten days of weaning off fentanyl!! good for you!!!! you are one strong, determined woman!!!

yes, i'm ok thanks. i do hope and pray you feel better soon. take good care. annie xx


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