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So embarrassed please help

Constipation Fissure Pain Gas Laxative Bloating

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#21 GilmoreGirl

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Posted 11 June 2017 - 09:53 AM

Thanks for the advice. It's a strange med...I just don't think it's working for me. I took it with food at 5:30 am and I still had to use an enema at 10:00 to go. It did soften the stool some, which I think just made things worse (like there's no momentum anymore so it just sits there). And this is in addition to senna last night.

I do think I have less pain, BUT much more 24/7 discomfort - huge amount of bloating, smelly gas, feels like I'm pregnant all the time and I have no desire to eat (I'm getting some nausea too).

I think I'll make another appointment with my doctor Monday. She may tell me to stick it out but maybe she will have something else. I wonder - is there anything that has the desensitizing effects of constella but not the part that brings water into the bowel? I think that part makes things worse for me not better.

#22 annie7

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Posted 11 June 2017 - 10:02 AM

oh i'm really sorry that it didn't help.  did you take the 290 mcg dose?

 

your samples aren't expired, are they?  and did they  come in the original, factory sealed bottle with the little desiccant packs in it.  linzess is a very unstable medication--very sensitive to both  heat and humidty.   as it says on the label, it's intended to be kept in the original bottle and not to be decanted (like some pharmacies or doctors do) into another bottle.    

 

yes do talk to your doc. hopefully she'll give you a script for restoran.   good luck. 


these are just my own thoughts. for expert medical advice please contact a health care professional.


#23 GilmoreGirl

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Posted 21 June 2017 - 05:51 PM

Thanks again for the reply.

My doctor decided I should try two things. First, the antibiotic rifaximin 3x daily for 14 days. I'm on my 4th day and I THINK but I'm not sure it's helping. I have less pressure in my chest/upper gastro area. I still get discomfort and pain daily that is only relieved by a bm. I'm continuing to take the laxatives to go in the am, and use a small enema bulb 30 min after eating dinner to help relieve built up gas and I feel better. I wish I didn't have to do this but I'm so uncomfortable if I don't, the gas discomfort starts around 4 pm and comes out slowly, I spend the rest of the night in discomfort if I don't get it out.

When the antibiotic is done, if I'm not feeling 100% I'm to take the larger dose of constella. I will double check the date on the constella but there is a desiccant packet inside the container and I did not remove the pill until just before taking it.

Next step with my gp - will ask again about restoran, as well as maybe increasing amytriptiline or maybe an ssri. I really don't want to take another medication or more amytriptiline but I'm noticing that my anxiety is getting out of control. It's a vicious cycle of being worried I won't have a bm or worried about being sick and I think I exacerbate things. I see a psychiatrist next week and will be asking about a referral for hypnotherapy.

Thanks as always for the support

#24 annie7

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Posted 22 June 2017 - 06:54 AM

thanks for the update.  

 

sounds like you and your doc have a good plan going.  yes, hopefully rifaximin will help and the bulb enema is a good idea, too.

 

hope the larger dose of constella will work and yes, good idea to ask your doc about restoran if it doesn't.

 

good idea to try to get your anxiety under control since that does make everything worse.  you're right--it is a vicious cycle.   and that's great that you'll be seeing a pysch doc and asking for a referral for hypnotherapy.  that can be very helpful, i've heard.  

 

you probably already know this but amitriptyline can be constipating.  there are ssri's that have D as a side effect..

 

sounds like you're being proactive and  doing all the right things . good luck with everything--keep me posted.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#25 GilmoreGirl

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Posted 23 June 2017 - 06:40 PM

I thought the rifaximin was helping but today I had the most horrendous stomach pain. I was not at home, and it sent me into a panic. It hurt so much, burning stabbing cramping pain from my chest to my belly button. When I got home I immediately drank a glass of warm water and had a small snack, lay down with a heating pad, and soon passed some gas and felt much better. I cannot believe that gas causes me so much pain. I don't even have that MUCH gas, I maybe pass gas 7 or 8 times in a day. I also take gas x 3x daily. It just hurts me so much.

So all in all I had an awful day. I start to worry I will be like this forever. I have to go back to school in September and I don't know how I will. I'm in so much pain and so depressed. I just want to be normal and be able to have a boyfriend, work, go out with my friends, travel, even just live without constant pain or discomfort. My life revolves around eating and going to the bathroom. I think about what a relief it would be to have a colostomy and be done with it. I also think about suicide almost every day, if it weren't for my family I think I would go through with it. I have no more friends left who can deal with someone who is sick all the time. I can't be productive so I feel useless and like a waste of space.

I just want a doctor to admit me to the hospital and figure out what is going on, or how to help me. They don't understand that although there isn't anything life threatening, my life is over at 25 because of this.

Sorry for the rant. Just had to get it out because I've been crying and googling for hours and I can't take it anymore

#26 annie7

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Posted 24 June 2017 - 07:44 AM

oh, i'm so sorry that you're having such a miserable time of it.  

 

and no need to apologize for the rant.  that's one of the reasons the board is here--it's good to rant and get it all out. 

 

you are not useless and a waste of space.  every life has value whether you are able to be productive or not.   you  are someone who has  a chronic disease and your are being very  brave and proactive in getting help and dealing with it and trying different things to help manage it.   yes it is very difficult when one has chronic long standing pain--i know from experience.  it takes a lot of courage and energy. and it's wearing.  and yes, it can be depressing.  i try not to think and worry about the future and just take everything one day at a time, one minute at a time.   but i really do think that with everything you are trying you will be able to manage this. 

 

so sorry about all the gas and the pain. yes, gas can be very painful.  i know people who went to the ER because of it.  you were smart to use a heating pad. they can be very helpful. i used to lie down with a heating pad and do a colon massage, which really helped to get the gas out.  there are some good u tube videos on colon massage.

 

hopefully once you're done with rifaximin things will get better.  and yes, i think looking into hypnotherapy is a terrific idea.  we have a forum here on the board about it:

 

       http://www.ibsgroup....d-hypnotherapy/

 

and do give prucalopride a try. i think it might help. i wish it was available in the usa so i could have tried it.

 

and it's good that you'll be seeing that pelvic floor physical therapist who is a competitive weightlifter. 

 

also--if pain is your major symptom and nothing  else works, you might want to consider pain management. 

 

i suffered with chronic constipation since childhood. i'm now 64. i was dx'd with colonic inertia, pfd, megarectum, rectal hyposensitivity and a long twisted colon.  long story short, two years ago i had an ileostomy because nothing was working for me anymore and i wanted a better quality of life. 

 

i do hope that today is a better day for you.  hugs, annie


these are just my own thoughts. for expert medical advice please contact a health care professional.


#27 GilmoreGirl

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Posted 24 June 2017 - 11:11 AM

Thanks for replying. You're right, I need to take things day by day. It's just hard not to look at other people and wish I could be like them, go to bathroom and eat without struggle or worry.

I'm sorry you had to have an ileostomy...but are things better now? If it has provided you with relief then good for you for being so brace to have that done.

Im not feeling to great today but will go to the gym and try and get some exercise. Im scared about starting school in the fall. I have one semester to complete and defend my masters thesis and I'm not at all physically or emotionally ready. But if I don't go back they will kick me out. I'm also getting very anxious about my laxative use, that I'm going to make things worse later on...I am noticing the senna is becoming less effective, and I don't want to go over 1 pill daily, so I will go buy the dulcolax that you mentioned and try it for a week.

I'm hoping the antibiotics will help...although since starting them I've noticed that I have VERY smelly gas. Normally when I pass gas it hardly even has a smell. Now it's awful...any ideas if that's normal?

I'm guessing my doctor will want to try and increase my dose of amytriptiline to help with the pain, and give the higher dose of the constella a try, but I don't have high hopes for either.

I suppose pain management is always an option. I had almost no stomach pain or discomfort when I was on morphine, until my body started getting used to the dose, then I had even WORSE stomach pain and I think that's what got me to where I am now. So the thought of painkillers scares me. But at the same time, even when I was severely constipated post op, my ibs pain felt great.

#28 annie7

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Posted 24 June 2017 - 11:54 AM

yes, thanks, my ileostomy has given me a better quality of life. i no longer  have to struggle in the bathroom for hours to go or take lots of laxatives.

 

pain management is not just about taking opiods.  it can be, if necessary, but PM docs use a lot of different ways to treat pain--cbt,  meds other than opiods, procedures such as nerve blocks, PT, etc.   whatever it takes.

 

also--ask your doc if you can try resolor ( restoran--prucalopride).  it works different than the other meds available, which just add fluid to the colon.  instead, restoran works on serotonin receptors and  enhances gut motility.

 

will your university accept a letter from your doctor explaining that you have health problems and allow you to finish up at your own pace. i know people who've done this and it worked for them.  colleges can be very understanding about health problems.

 

 

i've posted about laxative use before so maybe you've already read this but  my gastro docs told me that it was far better to take laxatives daily to help me go than it was to take nothing and risk developing an impaction. 

 

        https://www.ncbi.nlm...pubmed/15654804

 

       https://www.ncbi.nlm.../pubmed/8234421

 

           

 

that's good that you're going to the gym today....i do hope that you start to feel better soon. 


these are just my own thoughts. for expert medical advice please contact a health care professional.


#29 GilmoreGirl

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Posted 25 June 2017 - 09:20 AM

I will ask the doctor about restoran again and about maybe going to a pain management clinic. The pain woke me up this morning. It's constant. I have maybe a day of relief once a week, im getting so depressed I don't know what to do. The senna isn't working well anymore and I don't want to increase the dose - I will try dulcolax tonight, I hope it works.

I'm also running out of money so I really need to get back to work and school (I'm paid a small salary for graduate studies). I think I will have to beg them to give me more time (I've already taken the maximum 3 semesters off - I can't believe I've been in agony for so long). I'm starting to get really scared and just want to die every day, it's really scaring me and I'm scared to be alone.

I've been to emergency twice before with this pain and confided in the doctor that I've been feeling suicidal and they did nothing about it. I'm trying so hard but the pain is unrelenting and I'm continually disappointed by the treatments I'm offered, I don't know how to go on with this.

I can't imagine having to work 9-5. I don't want to end up relying on parents, living with them, doing nothing with my life because of this pain. I can't have relationships and friends have abandoned me, I don't have anyone besides my parents and i feel like such a burden.

How to you get through the day when every minute is agonizing or at the best very uncomfortable? I don't know how to go on. And then I just feel stupid and weak - there are other people with much worse issues and they manage.

#30 annie7

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Posted 25 June 2017 - 11:45 AM

i'm so sorry for all your pain.  and i'm really sorry that you are feeling suicidal and are afraid to be alone.  please call a suicide hotline today to talk to someone about this. or you could call your doctor's office and speak to the on-call doctor about it--or call your doctor tomorrow to talk to her or someone there about it or if you have a psychologist, please talk to them.  a psychologist's office will have an on-call doc you could talk to today.  it's terrible that the ER doc you talked to did nothing to help you.

 

about laxatives--they  won't work if you don't take the amount you need. i took four maximum strength senna tablets.  you always want to start out with the lowest dose, of course, but if that doesn't work, try more. laxatives are safe to use when used as directed.  if you try dulcolax,  be sure to follow the instructions on the box and don't take it within an hour of antacids or milk or dairy products.  otherwise you'll get cramping.  you could also try taking Dr Schultz Intestinal formula #1.  it's all natural and a lot of people here say it really helps.  if you can't find it in the drugstore, you can buy from amazon or from the dr schultz website.

 

                http://www.ibsgroup....-can-recommend/

 

please don't think you are stupid or weak or a burden to your parents--they love you and want to help.  you are dealing with chronic pain and that is very difficult and wearing.  i am very sorry that you are feeling so bad and feeling so depressed. i do wish there was something i could do to help.   please do take good care of yourself.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#31 GilmoreGirl

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Posted 26 June 2017 - 09:17 AM

Thanks for replying to me always Annie, you're really a lifeline for me at the moment, so greatly appreciated.

I had a long talk with my mom yesterday and she decided I needed a distraction so we went out and about, shopping and errands and such, and it definitely helped. I'm just trying to push through the discomfort, and today is difficult because my dad is away and my mom is off to work, so I'm on my own. It seems pathetic to me that I'm 25 and feel like I need my parents but I'm so scared to go out and do anything and then be stuck somewhere feeling miserable with no one to take me home or talk to. Not a good feeling.

I have an appointment with a new psychologist next week and I will bring up these awful feelings with him. I hope he works out...I've had two before and I didn't feel comfortable with either of them.

I tried the dulcolax and followed the instructions, and it worked well beyond a little nausea last night. I take it in the afternoon and with senna I normally have the urge to go around 10:30 am, but the dulcolax seemed to work faster - around 8:30 or so which is better - I'm not stuck lying around waiting for things to move. I think I will take the dulcolax for a few more days then switch back to senna - and continue to alternate every few days.

I don't know if you have ever taken rifaximin, but I'm wondering why all of a sudden my gas smells so awful...I hope that will stop when the antibiotic is done, because I don't need yet another symptom to worry about (before my gas was copious, but not smelly).

Wow the things we post on here. It is always helpful to be able to talk openly. I really hope I can get things sorted and start being able to help others on this board as you have done for me Annie.

#32 annie7

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Posted 26 June 2017 - 11:06 AM

thanks for your kind words. i'm glad i've been able to help a little bit. 

 

that was such a good idea to go out with your mom yesterday and run errands and things. good for you for being strong and doing that.  doing things like that does help a bit to take your mind off the pain. that's what i do to help distract myself from my pain. it does help although the pain is always there in the background like bad muzak but it helps to distract oneself and focus real hard on something else.

 

i'm sorry that it's hard to go out by yourself--i do understand, it must be a terrible feeling. hopefully this will get easier with time.  maybe you could just start out with short trips or going for a short walk or something and see how that goes and then work yourself up to longer trips etc.   also, when you are at home, you can try to focus real hard on whatever you are doing--housework or whatever.  i've found that even just listening to music helps--it makes my mind soar and distracts me from my physical pain.

 

please don't be so hard on yourself.  you're not pathetic.  no way.  you have a lot of problems, a lot of pain and are doing the very best you can right now and that's a good thing.  in time, things will get better. i know it will.

 

yes, it can be hard to find a psych doc that you can feel comfortable with.  i do hope the new psychologist is a good fit for you and that you can talk all these things over with him. 

 

i am SO relieved that the dulcolax  helped!  hooray!  that's good idea, alternating the laxatives. that's what i used to do.  i rotated dulcolax, senna and cascara sagrada.

 

no, i've never taken rfaximin. i was dx'd with sibo but my insurance refused to pay for rifaximin and i couldn't afford to pay out of pocket so i took augmentin instead.  it does sound like the smelly gas could be a side effect of it, though, since it started when you started taking rifaximin.  i know that smelly gas is definitely a side effect of sibo.  maybe it has something to do with rifaximin fighting off the bad bacteria??

 

oh yes--you are so right--the things we post here  smile.png .  but that's what the board is for--to be able to talk openly about our problems. after all--if not here--where?   this is a safe place.


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#33 Akn1965

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Posted 28 June 2017 - 07:42 AM

Thanks Annie.
You are trying to your best with heart and soul to survive and to give guide line and to give consolation to needy members.Though I have not found any solution to my ibs-d yet I am proud of this website.
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#34 annie7

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Posted 28 June 2017 - 08:13 AM

oh thanks so much, Akn---such a wonderfully kind thing to say.  i really appreciate it smile.png .

 

i'm sorry that you haven't found any solution to your ibs-d.  i do hope that somehow you can eventually find some relief.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#35 GilmoreGirl

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Posted 29 June 2017 - 02:55 PM

Thanks so much Annie - for some reason I just saw your post now so I'm replying late!

I'm down today because I had to miss my brothers graduation. It's one thing to let myself down and not be able to do things I want, but the guilt is overwhelming letting others down. I'm not a good friend or family member right now, and I feel selfish.

The pain is always there - you're right Annie. I think that's why I feel better when I exercise - it distracts my brain and floods with feel good hormones. But most of the day is spent in extreme discomfort or pain like today.

I'm not sure the antibiotic is doing much. I seem to have less gas and bowel movements are firmer. But my pain hasn't changed.

The visit with the psychiatrist helped. He ha sure a different approach to the others I've seen. He is very structured and planned. He does psychoanalysis, which I think may help as it delves a little more into deeper emotions or trauma that aren't necessarily noticeable to us.

Soon will be done the rifaximin and will try constella again.

Hard to even walk down the street and not look at people and feel jealous. They can work and go out and enjoy life and eat and poop without worry stress or pain. It's just awful how jealous of everyone I'm beginning to feel.

Hope you're doing well Annie, thanks for your support

#36 Akn1965

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Posted 29 June 2017 - 07:15 PM

I am very sorry for your pain and such types of situations GilmoreGirl.
In many cases of ibs time will settle many things.you have to keep patience. You should keep on exercise .

Take care.

#37 annie7

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Posted 30 June 2017 - 05:03 AM

so sorry you had to miss your brother's graduation--having to miss family events because we are too ill and in too much pain is always difficult,.  but please please don't be so hard on yourself.  you are not selfish.   and you are not a bad friend or family member because you are suffering from health problems.   you were suffering and you were in too much pain to go. you would have gone if you could have.  hopefully your family understands this. 

 

i'm so glad your visit with the psychiatrist helped!  that's wonderful.  and yes, that's good that he does psychoanalysis.  that was such a good idea to see him. he sounds like he'll be quite helpful.

 

i do hope today is better for you.  take care.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#38 GilmoreGirl

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Posted 30 June 2017 - 10:43 AM

Thanks AKN and Annie.

I'm just so fed up. My abdomen is so tender and sore this morning. It woke me up at 4 and I haven't been able to go back to sleep. I don't have the strength to exercise or do anything right now I just feel so bad. I'm tempted to go to emergency because I'm just so tired of this but I know they will do nothing for me.

I'm so tired I don't want to carry on like this. I've had pain for almost a year now. Every day. Not a day without it.

I don't know how this can be just anxiety. There has to be something wrong. I spent hours googling this morning which is horrible but I need to find something...I don't know if my gall bladder, pancreas, kidneys have been checked. I've even read that people can have a disc prolapse causing nerve impingement in the spine with the only symptom being persistent stomach pain...but i know if I tell these things to my doctor she will brush it off.

How do people live with this level of constant pain?

#39 annie7

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Posted 30 June 2017 - 01:56 PM

i'm so sorry about your ongoing pain.  yes it is very wearing to have to deal with chronic pain day in and day out.  i really hope you can get into pain management.  those docs understand about chronic, ongoing pain and can help you manage it and deal with it.

 

i have interstitial cystitis (among other problems) and have been having a flare for the last month. the pain is agonizing. there is no relief. like you, i wake up in pain if i sleep at all.  i just try to take it one day at a time, one minute at a time.  and yes , all that is  very hard.   

 

googling really just makes it worse and it does feed anxiety.  that's one of the reasons why i hope you can get into pain management.  you can talk these things over with your PM doc and they can order tests if necessary.

 

have you discussed your pain with your psychiatrist. hopefully he will have suggestions on how to cope with it.  and perhaps he can prescribe something that will help with the pain--maybe an ssri or something...some of them do help with pain.

 

sorry--i wish i had more things to suggest but i don't.... i really do hope things get better for you.  


these are just my own thoughts. for expert medical advice please contact a health care professional.


#40 GilmoreGirl

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Posted 30 June 2017 - 02:16 PM

Oh no Annie that's awful. I know IC can be absolutely terrible - you must be so strong.

I think I will ask for a referral to a pain clinic from gp because I'm at my wits end, as I'm sure you know.

I read some papers that discussed visceral hypersensitivity and they suggested combining drugs like amytriptiline with an Ssri so that is a good point. I've also been on an ssri before and I know it wasn't that difficult to come off of, which is reassuring.

The psychiatrist that I'm going to really is more of a psychologist - he prescribes as a last resort (and I agree with this, my dad had a bad situation with a psychiatrist overprescribing - even lithium - for ptsd). He did say that it is possible that working through some things - I did have a somewhat traumatic childhood and suffered anorexia for several years in my teens - may help the pain, but that it would be a very slow process.

I really hope your flare ends soon. Thank you for being so supportive...it's hard to help others when you yourself are in so much pain.





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