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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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  • Thebigboo2
    Thebigboo2 ndm

    Posted

    Hi there,

    just wanted to suggest (if you are taking Questran or cholesyramine) that you mix the one packet with 3/4 cups of water and take only 1/4 cup of the mixture per day at night before bed. Keep refrigerated. One packet will then last three days and you should not be getting constipated.

    • ndm
      ndm Thebigboo2

      Posted

      First, I love your name!  Thebigboo!   Thank you for the suggestion.  I may be taking that in the future so that's good to know.  Right now I'm taking big horse pills, but I see the doctor next week and we may be making a medication change.
  • Thebigboo2
    Thebigboo2 ndm

    Posted

    i forgot to add to my previous post that i only take the 1/4 cup of questran a day. I prefer to take it at night because that is the period of time we all go without food the longest. Food helps soak up the bile acid. i am always afraid of taking meds but I can say that the questran helped a lot.
    • ndm
      ndm Thebigboo2

      Posted

      My husband and I were just talking about this, when would be the best time to take the bile binder, during the day when I'm eating what I'm able to or at night.  I'm guessing that bile is released in response to ingestion of food, but I've read that without the GB, bile is released sort of constantly because it can't be stored.  There is so much to be learned and it really has an impact on our quality of life.  Thank you very much for the ino.  I feel that I'll have a lot of good questions for the doctor!
  • julie59216
    julie59216 ndm

    Posted

    hi sorry you have had a rough time. I am 2 months post op and getting better all the time. I read alot of things before op saying you will be back to normal in a couple of weeks which is rubbish. Everyone is different i know but it does take time. I still watch how much fat i eat. I am not fat free but just cut down and eat more little and often. I eat pumpkin seeds which seems to give a lift. Hope things improve for you and nice to hear from you across the pond.
    • ndm
      ndm julie59216

      Posted

      Hi Julie!!  Oh your words give me hope!!  I'm so happy for you that you are getting better.  Progress is great.  I think I forget that I have had some, but it's been so small and slow that I get easily discouraged.  Since I don't have much of an appetitie at all, I don't want to eat but if I make an effort to eat small things more often that could help.  It's just that it seems that every bite activites this area of discomfort in my upper right quadrant right where I think the GB used to be and it doesn't make eating very appealing.  I'll look for some pumpkin seeds.  Have you tried pureed pumpkin?  I seem to do a little better with soft foods.  Thanks so much for your welcome!
  • annissa75392
    annissa75392 ndm

    Posted

    Hi ndm, I'm from Washington,DC.. I am VERY sorry to hear of your issues as well as the others. My gb removal was 2 years ago, but after my recent ER visit, my gastrointerologist suggested I come in and  he would order an MRCP to see into the bile ducts as well as check on the pancreas. I'll keep you posted. You sound like you have something far more serious. Be careful. 
    • ndm
      ndm annissa75392

      Posted

      Annissa, wow, in DC you guys got hit with quite the snowstorm recently!! I understand travel becomes very dicey there when winters are this snowy. Glad you were safe, but sorry you had to go to the ER.  So when the GB is removed, the bile ducts aren't.  I didn't think about that, but I guess that's why we continue to have issues with bile and sometimes gall stones can still be in the ducts.  I sure hope that isn't the case for you and that your pancreas is OK, but if there is a problem I hope that it can be resolved so that you feel better.  Two years post-surgery is a long time not to feel better.  I will be seeing my GP who is a great guy and I have a gastroguy who may be next on my list.  As you know, when you feel sick and puny and scared of being away from the bathroom, it's hard to drag yourself out to do the doctor rounds.  But it is important!!  Thank you for the reminders and best of luck with your tests!  Please do let us know how you do.
    • annissa75392
      annissa75392 ndm

      Posted

      Thanks NDM.Yes our weather has been a little unpredictable and yes it makes for not too good days for dx rounds, but lately for me, it has been necessary.  Good luck to you as well. Because I have psoriatric arthritis, another health issue on my plate is not ideal. I have been trying to take it easy since Wednesdays attack. Hope you do the same. Finding this forum confirmed that my issue is real...the ER dxs were sketchy in their help or lack of. smile  I will stay plugged in and look forward to your health resolution.  
  • mary76546
    mary76546 ndm

    Posted

    Hi ndm I am also new to this forum. I have to say, I am scared to death after reading all the pain and terrible suffering that so many of you have gone through since having your gallbladders removed. I am going to have mine removed very shortly. I am also facing the possibility of a malignanacy. I just had an MRI today, which I believe is the last test before everyone decides what the next move is. I am so sorry for your suffering and I pray it will get better. I never knew that all these negative results even existed. I always thought gallbladder removal was no big deal. I am 63 but other than this problem I have always been very healthy. I wish you and everyone else the best.
    • ndm
      ndm mary76546

      Posted

      Oh, Mary--poor thing!!  Maybe not such a good thing to read here before the surgery.  Once I knew I had gallbladder disease I was so relieved that there was actually something that could be done about how sick I was feeling (and I was lucky, I'd only been very sick for about 3 months--some of our new friends in this group suffered for lots longer than that) that I was very excited to be scheduled for surgery.  I found this board and read about some of the long-term after-effects and became very frightened, too.  I looked into some alternative holistic treatments and actually considered postponing my surgery while I tried some supplements, cleanses, acupuncture and so on, but my gallbladder had other plans and about 10 days before my surgery date I had a very severe attack which landed me in the ER and took the decision out of my hands.  I don't know how successful the alternative methods would have been and perhaps they would have done more harm than good so I'm not recommending them.  The only way to permanently "fix" a gallbladder is to remove it, but sadly that doesn't always "fix" all the problems.

      You can see even just from this thread that lots of people have had trial and error and managed to find ways to address issues.  You can't live a healthy life with a diseased organ, and especially if, god forbid, you have a malignancy.  Please keep a positive attitude, try not to get yourself too anxious (it's like pregnant women whose friends tell them horror stories about their 72 hour labors), and remember that some of our new friends here had very good outcomes.

      Please let us know how your tests go.  Even tho I'm new here, you can see how many wonderful, helpful, and encouraging people will be here for you step-by-step, including me!  Best of luck!

  • Fergus1227
    Fergus1227 ndm

    Posted

    Ndm I understand your frustration please just pray and try not too do to much I've had my gb removed and it has been awful to me also but it takes time for your body to adjust without having a gb and I know you said your husband is older than you but if he loves youlike a husband and wife suppose to than you shouldn't assume that your putting to much on him cuz if he's doing it then he can do it just relax and make you heal and take care of you assuming it's only gonna make things worst for you and I'm from US and I get bloated, indigestion,constipation and more but is women are strong we will adapt and over come any situation........😊😊😉😉😄😄 GOD BLESS YOU SISTER! ! ! ! ! !
    • ndm
      ndm Fergus1227

      Posted

      Thank you Fergus!!  That's an encouraging point about my husband:  he is very loving and he likes to be helpful and active and if he is doing it, he can!  Made me smile.  So sorry you have problems, too.  Really, since GB seems like a common health issue, it's odd that there isn't more medicine can do to address the aftereffects.  I coped just fine after a hysterectomy at a young age and a hip replacement two years ago.  Think about it:  the doctors cut out a big part of a major weight-bearing joint and put in a metal ball and socket and within hours you are up and walking about with no pain.  And with gall bladder, they just have to snip out this little pouch and you potentially suffer for weeks, months or years.  Doesn't make sense to me.

      However, here's one bit of good news:  I was having daily headaches and for the past 5 days no headaches so that's some progress.  I'll take it and be glad!!

      Thank you for your blessings and care and may you also feel better.

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