61 replies to this topic

[annie7]

thank you for your understanding and support 

 

yes, do get a referral to a pain clinic--i hope you can get in to see someone soon.

 

and yes, that sounds like good information that you read about visceral hypersensitivity and combining amitriptyline with an ssri.  that sounds like a good idea. 

 

at least it would be good to talk everything over with your psychiatrist--especially if he's understanding and supportive. it may not help you specifically with the pain per se but it might help you mentally to cope with it.  and it would be good to talk with him about the awful feelings that you have that you mentioned earlier and the guilt you feel for missing family events and everything--your feelings of hopelessness...things like that...

[GilmoreGirl]

Thanks Annie I will talk to the psychiatrist about those things.

Had a particularly horrible day with pains at a level of 8/10 for several hours. Almost went to the emergency room but I know they will send me home with no help as usual.

I did try a granola last night that had flax. Once when my ibs was under control I had a horrible pain attack after eating a granola bar with lots of nuts and seeds.

So I'm going to cut out anything with seeds for a few days, then nuts also if there's no improvement. Who knows.

I just can't believe after a day like today that my pain is just "ibs" or nervous system sensitivity. Is there anyone else on here with this extreme level of daily pain just from ibs? I feel like there must be something going on but my gp is sure I am fine so won't order any blood work or tests.

I'm at my wits end. Just called my mom and spoke to her and the whole conversation made me feel worse. I know I shouldn't be ungrateful for her help, but she just says things that set me off. I just don't think she understands the level of pain I'm in. She said if I was in that much pain then I would be passing out, and just always seems to think it's something I've done or haven't done that is causing my pain.

Overall just very tired and wishing this would be over

[annie7]

so sorry for all your ongoing pain.  

 

and i'm sorry you mother wasn't more understanding and supportive.

 

i would never wish this kind of constant extreme pain on anyone but i've often wished that those of us who suffer with chronic pain had some kind of "socket" sort of thing in us that would let other people--doctors, unsupportive  family members, friends etc--  "plug into" us so that they could actually feel  the amount and severity of the pain we are in.  then they would understand--if they had to feel it themselves and know that we are suffering with this 24/7 with no end and no hope of getting better...

[GilmoreGirl]

YOure right Annie, that's exactly how it feels. It would be good if others could understand but I wouldn't wish this pain on anyone.

I finished the rifaximin two days ago and things have gotten worse since stopping. I'm having loose, pale "floating" bowel movements accompanied with painful cramps gas. I have a lot of movement and discomfort in my gut at most times. The usual daily pain is still present. The dulcolax and senna have not been working as well.

I also last night had pain that I don't think was digestive. It felt like I was in labour - I literally had "contractions" every ten minutes for several hours - like realllly strong period cramps accompanied with nausea. My whole lower abdomen and pelvis ached all night.
Unfortunately things did not work out with the psychiatrist. It was too uncomfortable for me - his approach just didn't suit. Our first visit was good but the second appointment was not. He invited me in and didn't say barely a word the whole time. If I didn't speak then there was silence. I didn't even know what i should be talking about and felt very uncomfortable - there was a lot of silence. It felt like a waste of time.

I'm really trying to take things day by day but I'm feeling worse since stopping the antibiotic and it makes me nervous that this is the new normal.

I have to try the constella (will likely do so on the weekend) at the higher dose, and then I have a follow up with my gp next Friday.

I'm starting to think I will have to accept that my life will be difficult like this and plan accordingly. It isn't an easy thought to face.

[AIRPLANE]

Have you ever considered the possibility of endometriosis? A lot of women who are diagnosed as having IBS have found out later that they have endometriosis. But it is difficult to find Drs who are good at diagnosing and treating it effectively which requires surgery because it doesn't show up on imaging tests. A lot of the information and articles about it found online is outdated and inaccurate. Severe pelvic pain can be caused by certain types of ovarian cysts when they burst such as endometrioma or dermoid ones.

[GilmoreGirl]

Thanks AIRPLANE. I did mention it to my doctor and she dismissed it - but I think with the recent pains I've been having on top of my normal ibs pain, it might be worth reconsidering.

I do have pelvic floor tension AND a small localized perineal descent since I had surgery for an anal fissure. The doctors didn't know what came first - the pelvic pain and tension or the fissure, so perhaps it is related.

I don't know if it could be related to the other types of pain I feel - mostly feeling like I have a horrible stitch in my side (left mostly, sometimes right) and sometimes chest pain and pain below the ribs.

Any insight is appreciated - thanks for your help

[AIRPLANE]

I definitely think that it is worth considering but unfortunately there are not a lot of Drs/Surgeons who have the proper skills for diagnosing and treating it. The average gynecologist who spends most of their time dealing with pregnancies and delivering babies just doesn't have the time, knowledge and experience to properly deal with it. It really needs to be a specialty and only a handful have bothered to make it a priority to become good at diagnosing and treating it.

I messaged you about some good resources. I myself would love to see one of the top endometriosis experts in the world but it hasn't worked out yet because he is a few hours away from where I live and I am the primary caretaker of my elderly father. Like you, my late mother was not very understanding or supportive of my pain and problems. But then, she was brought up with the idea that it was 'normal' for women to have pain and various problems due to just being female. This attitude needs to be done away with. Just because it is common should not mean that it is 'normal'! Things like endometriosis, adenomyosis, PCOS are very real conditions that should be properly addressed in a timely manner. But it isn't happening yet, though there are people who are trying to change this.

[annie7]

so sorry about all the pelvic pain you had the other night.  yes, do follow up on that like airplane suggested. i have endometriosis. when i had my hemicolectomy, the path report showed endo on my colon. i also have cysts on my ovaries which can be very painful.  there are some good books out on pelvic pain like "a headache in the pelvis"  etc .  amazon had a good list  of them.

 

sorry your psychologist didn't work out.  i don't think i would care for his silent approach either. i do hope you can find someone who will work out for you.

 

are you taking the full dose of senna and dulcolax or just the one pill.  i needed the max dose for those to work for me. i also had good results taking an osmotic lax along with a stimulant.

 

there's a lot of other laxatives you can try like intestinal formula #1, MagOx, Mag07 , triphala etc etc.   never give up. there's lots of things you can try.

 

if the higher dose of constella doesn't work, try tweaking it like i mentioned earlier.  and there's always prucalopride.  that  should work for you since it increases colonic motility.

 

Trulance (plecanatide) is a new C med that became available here in the usa early this year. i don't know if it's available in canada or not but ask your doc. if she doesn't know---some GPs  aren't up-to-date on the latest C meds--call your pharmacy and ask.

 

hope you have a better day today.  take care.

[sara1991]

Hello GilmoreGirl! Just realized everything you're saying are my exact same thoughts day in & day out. Im also 25 and have always been so independent until this happened & feel like a big baby calling my mom crying everyday. Its ridiculous that this disease can cause so much emotional trauma itd lead someone to think of suicide but Im trying to pull it together & experiment witj different things as drs have been no help whatsoever. Im also on an SSrI and Resotran which stopped working and currently on a low fodmap diet with magnesium citrate. I hope Id wake up & this would go away noone deserves to be in this much pain 🙏🏻 Feel free to DM me if you need to speak about anything, this group has been the only great thing this past 6 minths.

[Hartigan]

GilmoreGirl,

 

What helped me most with my pain was an antispasmodic - Mebeverine Hydrochloride 135 - trade name Colofac or Duspamen/Duspatalin...it s specific to IBS pain. Dosage I was told was 1 tablet up to 3 times a day - 20 minutes before a meal. I took just one of these and could not feel my guts at all the whole next day....I was amazed & relieved.

 

You may want to check with your docs about this & get a script to try it out.

[GilmoreGirl]

AIRPLANE - I got your message, thank you so much for the detailed info! It was so helpful. I found a specialist in my area but I'm doubtful about my gp giving me a referral to her - she's already made it clear she doesn't think it's endo, but I'm really not sure. I'm also sorry you're suffering also. Pain like this is not something I'd wish on anyone, ever.

Annie - I can't believe you also had endo on top of everything. You've had such a tough time - it's inspiring that you carry on and help others too.

I have been taking just one pill of senna or dulcolax. The dulcolax works perfectly some days and not others. The senna isn't working much anymore. I bought aloe Vera gel capsules and a magnesium supplement - I'm thinking about adding in one of those but I'm nervous about making things worse. Also still have not tried the greater dose of constella - I will try in the am maybe. It made me feel so bad last time I've been putting it off. Thanks for the info on that new med - adding it to my list to ask the doctor about.

Sara - I'm so sorry you're suffering also. It's not fair that anyone should feel this way. For sure let's chat over DM - it sounds like we have lots in common. Not an easy journey, stay strong.

Thank you Hartigan - that sounds fantastic. Definitely will ask the doctor about it! I do find buscopan sometimes takes the "edge" off...so maybe a stronger antispasmodic would help me also.

It has not been easy lately. Not any better at all. I did notice today though that part of the pain I'm feeling is nausea...I didn't even recognize until today it got to the point where I threw up...and I neverrrrr vomit so it surprised me. I was fine one minute then the nausea hit and my whole abdomen, sides and lower back started to kind of burn...and I got all sweaty and sick. Strange. I guess I didn't recognize it before because it's so strange for me to nauseous.

Thanks all for the info. I have an appointment with a new physio on Thursday and with my gp on Friday so I'm hoping next week will be productive.

[Akn1965]

GilmoreGirl,
Have you ever tried Drotin ds(Drotaverine hcl 80 mg) for abdominal pain?
Thanks.

[GilmoreGirl]

Akn - I haven't tried that but I will ask my doctor about it.

I have had a pretty good week compared to others, so I'm hoping things are improving. My uncle suggest trying DGL (licorice) in chewable tablet form between meals and it seems to help with the burning. I'm still having waves of pain and some nausea but they seem more scarce.

I tried the larger dose of constella on Monday and it worked ok - I took it at 5:30 ate at 6:00 and went at 9:30. I filled the prescription and used it again yesterday with no problems - but today I'm having cramps and diarrhea. I would like it to work sooner in the morning, so I will try taking the smaller dose before bed tonight instead of the full dose in the am. I have an appointment with my doctor tomorrow so I will ask her about the antispasmodics and tell her about the nausea and "uterine" type pain.

I have pelvic floor physio in an hour and I'm anxious because my stomach is still cramping like I will need to go, and my last bm was only liquid. Hoping there's nothing left.

[annie7]

that's good that you are having a better week compared to the others.  hope your appointment with the physio went well. and good luck with your doctor's appointment tomorrow.   if you don't feel constella is working well for you, ask her if you can try prucalopride.  it works in a different way than constella--it helps with motility.   good luck. 

[Akn1965]

Thank you Annie.
I have no knowledge about constipation.I am here to encourage you and GilmoreGirl. By your inspiration now she is aheading to a normal stage.it's an honest attempt of you.really I am very glad of your attempt.
Thank you very much again.

[annie7]

thanks so much, Akn, for your kind words--that's really nice of you.   and thanks for all the helpful and encouraging answers you have given people. 

[GilmoreGirl]

Thanks Annie.

My doctor wants to give rifaximin another go - this time for 30 days - because she thinks it did help. I do agree, my stomach has felt much less bloated (visibly also) and I have less gas - but it is painful when I do have gas. She also wants me to keep up with the constella.

The problem I'm having is that no matter what time I take the constella and dulcolax, I don't have a bm until 10 am. That means I'm sitting around uncomfortable every morning until then. I would love to get up at 8 and just go. My doctor suggested taking it at night, which I did - still no bm until 10 am.

I'm so confused about this because it should make sense that the earlier I take it, the earlier it works. I don't understand if taking it with food will make it more or less effective either!!

I'm thinking on taking dulcolax tomorrow around 8 am (rather than 11) and waking up to take the constella at 3 am with a small snack and go back to bed.

Any ideas?

Thanks

[annie7]

glad the rifaximin has helped  and hopefully another course will make things even better.

 

do you take dulcolax at 8am (or 11am) and it works the next day?   you do have to take the amount of dulcolax that is effective for you. i needed three pills--otherwise  nada.  it took about 12 hours for it to work for me. 

 

and yes, one would think that taking these meds earlier would make them work earlier.  

 

like i mentioned before, constella works on the same receptors that food does.  taking it with a meal  makes it work faster.  you also get more D that way.  i don't know what taking it at night with just a snack will do but i imagine that would work.    good   luck. 

[Redmapletree]

Some of what you are going through is very familiar to me.

In my mid teens I began having chronic constipation and abdominal pain. I am now creeping up on 50 and finally got real relief this year.

You and I have the same abdominal gas, pain on the left side right up under the ribs, lower abdominal pain, etc. like you I tried all different types of medications.

Starting in feb of this year it would take linzess 290, miralax 120-130 mg, 6 dulcolax, and a full bottle of magnesium citrate -- every day to get any relief at all. Along with that it would take on average 9 days between BMs.

So my GI doc sent me to a surgeon to have a subtotal colectomy. What they found was that my colon was enlarged over three times the normal size. He removed 4 feet, most 10 cm in diameter. And they found that the nerves in my bowels do not work properly.

Now I am doing so much better. I still take ducolax every evening and alternate the amount - will take 1 then next night take 2, then1, then 2. If I go 2 days without a movement I will take 3.

Don't give up!! It does get better.

[annie7]

thanks for your story, Redmapletree--you've been through so much.  your colon sounds a lot like mine was.  no wonder we couldn't go...