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From US--new to group

Posted , 9 users are following.

ndm
ndm

I hope it's OK to join the group.  I've been reading here for a while and can't find a group here in the US.  I had my gall bladder removed about a month ago.  I had been feeling ill for about 3 months with digestive issues but since I've had IBS for years and wasn't having pain, just lots of discomfort, indigestion, loss of appetite, diarrhea, and rapid weight loss, , my doctor and I didn't suspect gallbladder until I had an attack which sent me to the ER where tests were finally run.  I was scheduled for surgery, but a more severe attack brought on surgery sooner than expected.

I had read here that it takes some people a long time to recover digestive function, but I am dismayed at my lack of at least some progress.  I still have daily diarrhea, sudden, unexpected, watery and exhausting.  I was having symptoms of malnutrition (I am very fat so to become anorexic and malnourished virtually overnight was really odd).  I became afraid to put anything solid in my mouth.  I had a very sore tongue and mouth and my gums were so tender I could hardly chew anything.  My lips were cracking and my mouth was splitting on the sides.  While these symptoms having improved somewhat, they haven't gone away.

I am so tired all the time, no energy, trying to eat some protein everyday, chicken, some rice and applesauce, but mostly no appetite to speak of and everything seems to go right thru me.  My husband is getting very tired of hearing me complain about my bathroom problems.  He is older than I am (I'm 61, he's 82) and he's having to manage the entire household chores by himself.  I'm scared that I'm putting too much physical responsibility on him (we have an older home which needs up-keep, lots of snow this year so tracking of sand, wet, and so on, and 4 cats).  He has to do my laundry and make my bed and do all the shopping.  I just don't have the strength.

My doctor gave me a medicine to "bind" the bile which I am taking but if I take it as directed I become so constipated that I end up having bleeding hemorrhoids and can't eat or drink anything.  My stomach is bloated all the time and there is a constant gurgling feeling in my upper right abdomen where I guess the gallbladder used to be.  

I'm sorry to be so graphic about all of this, but there is no one around me who really understands these conditions.  My surgeon says "It will just take time for your body to adjust" and my doctor gave me the bile binder and a friend told me about bile salts but I'm afraid to try them because I've read that if they aren't balanced correctly, the side effect can be diarrhea.  I feel that I am losing most of my quality of life, being virtually housebound the last 5 months, becoming weak, mentally confused, overwhelmed easily, constantly tired, and unable to be away from the bathroom for any length of time.

I know there are many others in the group who are facing similiar problems.  I don't expect any answers--right now it just helps to be able to speak the truth about this exasperating situation.  I'm angry and frightened that I'll never get my life back and all over some tiny little organ.  

If anyone has managed to listen to me whine for this long, thank you for your patience.  I do feel a bit better having vented in a place where people know how it feels.  I wish you all good luck and better health!!

 

1 like, 29 replies

29 Replies

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  • Jennifer28269
    Jennifer28269 ndm

    Posted

    Hi ndm and welcome. I am also in the US smile I feel your pain, literally. FYI on the binding med, do not take as directed, take what works for you. I was on Welchol at first, directions were to take 6 pills a day (?!?!) I took one pill a day and managed normal bathroom habits. Re: quality of life, I gave up that hope almost a year ago. I never had health issues until I had my GB removed. I now have bile acid reflux, a B12 deficiency/anemia requiring four hour iron infusions twice a year costing $1500 ea, horrific anxiety and all kinds of side effects from anxiety meds, etc. I am amazed I haven't lost my job. To be 40 and pretty much incapacitated is like a life sentence. A lot of people have no issues after this surgery (like my Dad) but most I know (through here especially) have nothing but issues. I wish I had more encouraging words for you but I do not. Hang in there. I'm grateful you have your husband, I have no one, aside from my 2 cats who aren't much help wink I have had test after test after test for the pain I still have where my GB used to be, it's wears me out. I feel like I am 88 and I am tired of fighting this battle.
    • ndm
      ndm Jennifer28269

      Posted

      Jennifer, thank you for the welcome!  I'm so sorry to hear about your issues and at your young age too.  Good grief, I never knew gallbladders could cause so much trouble!  It's incredible to me.  I know I'm lucky to have my husband, who despite his age is healthier than I am (his mom lived to be 102!!--good genes!).  I wish you had someone to help you.  Don't know how you manage all alone.  My cats are no help either!  I can't even get them to clean up their own messes, let alone mine!  I appreciate the encouragement about the meds.  I wish I had some encouraging words for you.  You've helped me feel better.  If you can hang in, then so can I.  I'm grateful you reached out to me.  Best wishes to you!
    • Jennifer28269
      Jennifer28269 ndm

      Posted

      Angela and I both feel your pain, we've been there. I also take a probiotic daily too, as well as digestive enzymes (I took myself off the binding meds due to side effects and find the digestive enzymes work just as well). Feel free to post anytime. We are here and suffering with you smile
    • angela72602
      angela72602 Jennifer28269

      Posted

      Thank you jennifer. I will check this out!! I am also diabetic. This should not interfere with this I hope.
    • ndm
      ndm Jennifer28269

      Posted

      This is good info, Jennifer--the binders make me feel pretty rotten but I thought I would just have to give my body time to get used to them.  I had been taking the (expensive!) probiotic Align some months back for my IBS (pre GB) but it stopped being effective.  
  • angela72602
    angela72602 ndm

    Posted

    Welcome to the forum!!!! I have been posting here since last year and I am from GA.  A small city in the U.S.A. we are about 50 miles north of Atlanta GA. I have had the very same problems you are having after my surgery 11 years ago. Now, when you said your mouth was cracked on both sides I had that after my hysterectomy. The medicine the anethesiologists used caused mine to do that. I did that for about 2 yrs. Now, if I have to have surgery, I make sure they are aware of that happening. They ck. my records and change the meds. Not had that to happen since with 4 other surgeries. I take Cholestimine powder 3x's a day and about 4 immodium every tohter day that has helped my diarrhea very much! Get your GP to put you on this. Also, a lot of fiber and yes this will cause some diarrhea but start helping you also. Believe me I know and understand about the diarrhea! I have IBS and have to put up with this often. try some probiotics like yogurts, cereals w/ fiber too. Hope this helps. Keep me posted....  confused
    • ndm
      ndm angela72602

      Posted

      I'm so glad I didn't offend anyone by being from the "wrong" side of the pond.  Nice to meet a Georgia peach!  I'm so sorry you went thru similar things.  It's interesting about your mouth issues being caused by anesthesia--I never thought about that, but I will keep that in mind.  It really hurts!  Glad you've been able to avoid that.  I don't know about Cholestitine, but I will be asking my doc about that and what a good idea to use the immodium every other day.  I forgot to mention started taking a probiotic but will add yogurt and fiber cereal too and a multivitamin couldn't hurt.  Your suggestions are appreciated.

      I feel very lucky to have such caring responses.  It's a big comfort to find friends who can tolerate the icky bathroom talk.  It has taken over my life and no one really wants to hear about it--I don't really want to talk about it, but nothing else is going on.  Right now management is what I hope for.  Thank you again!

    • angela72602
      angela72602 ndm

      Posted

      I put up with this everyday. I make sure I know where the bathroom is everytime I go out to eat, I miss some church functions beacuase of my problem, so I completely know about this taking over one's life. I have a twin sister and 3 other sisters and they hate I have to live this way. There are times I find humor to handle this because they hear me complain all the time! They laugh with me and that helps. You come here with any problem and you will find friends!!
    • Jennifer28269
      Jennifer28269 angela72602

      Posted

      Right there with you. I must locate bathroom first thing if I go anywhere public. I think it's more anxiety for me since I have the bathroom issue somewhat under control. It's not pleasant. Like you, my family feels for me as this has gone on for so long. I have a CT scan Monday to check for scar tissue and trapped gallstones, will keep you posted wink
  • octavia123
    octavia123 ndm

    Posted

    Hi ndm, no wrong side of the pond to us :-) , if you're suffering you're welcome here, we will offer a listening ear even if we can't help, you do sound to be in such a state. I would suggest you note down what everyone says they've tried and had some success with on here, research it on google and see if you think it might help you. From me I think I would try a probiotic(tablets are best you'd need to eat a shed load of yoghurt to get the same effect and you need to take them with a cold drink as heat kills the effect) they are a bit expensive about £6 here for 120 tablets and they take a couple of weeks to get going in your system. I would also take a multi vitamin as some you need everyday and others you must be low in as you've been in such a bad way. These from what I have googled don't need to be expensive the cheaper ones just as good as all the labs have strict controls. I would also take extra b vitamins as lack of these can cause cracks at the side of the mouth and painful mouth and gums. None of these would do any harm. If you can manage to eat a little food whatever you think you can hold onto it will help. Have you tried dry food like cracker or rice cake, boring I know. Keep in touch on here all welcome only difference is the time :-) take care hope you feel better soon
    • ndm
      ndm octavia123

      Posted

      Thank you Octavia!!  Good to know about the cold water for probiotics and that it takes time.  Of course by now I want some instant relief.  Also b vitamins for mouth problems was something I didn't know about.  I can manage crackers when my mouth isn't quite so sore but I think rice cakes may be  easier--I don't prefer them so I didn't think about them but it's a great suggestion.  Already I am feeling less hopeless.  It's a pity that we all are suffering, yet knowing others are coping and sharing is a big comfort!
  • dorcas44815
    dorcas44815 ndm

    Posted

    Well, I am on the UK side of the pond, but originally from Arkansas, so I have a foot in both worlds! LOL.

    Firstly so sorry to hear how ill you have been - it is definitely not a good situation to find yourself in. I have been very lucky in that physically I have been almost completely better since my operation. However, I seem to have developed some psychological issues and I see that I have become obsessed about my digestive issues!

    Hopefully you will find something very soon to help you through all this. Sometimes I think it just takes longer for some of us to heal than it does for others. Good luck.

    • angela72602
      angela72602 dorcas44815

      Posted

      I love the U.K.!  I lived in Arkansas for about 6 months with my sister and husband who was stationed in Little Rock when I was a teenager. So I know about both places. Did not like the spiders though. I brought back a big tarantula to our biology class. We can learn so mcuh from different cities and countries.lol
    • ndm
      ndm dorcas44815

      Posted

      Dorcas, it's great that you have spanned the globe (well at least half of it!).  I'm encouraged to hear you have had such a great experience post-surgery and very happy for you.  I can certainly understand how you've become obsessed about digestive issues.  Since I've had IBS for so long, my "gut" was a big focus of my life but I had learned to pretty much manage those issues, at least to the extent that I could anticipate some problems and could still have a social life and even travel.  But this is a whole new world.  I never thought my life would revolve around this tube that goes from one end to the other.  Thanks for your kind words.
    • ndm
      ndm angela72602

      Posted

      You found a tarantula in Arkansas??  We had them in Southern California where I grew up and I thought they were pretty cool, but I didn't know Arkansas had them too!
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