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  • #1

    Is anyone going through unexplained weight loss???

    Hi Everyone,

    I know its been a while! (I've missed all of you!)I've been in hospital over 10 times over the last 12 months, admitted 6 out of those 12....and still nothing but ignorant Dr.s and no answers. . I was wondering if there is anyone who is going through the same symptoms, Hyatus Hernia, Major stomach and bowel problems, a 30lb weight loss that has lasted a year now, anemia and extreme fatigue. Other than all these symptoms I guess I feel great!! Anyhow, if your in the same boat please PM me as I feel extremely alone in all this!

    Here is my new and updated med list:Hydro Morph Contin 12mg x 4
    Oxycocet 8 per day
    Pyridium 2 per day as needed
    Thyroid meds
    Nexium
    Gravol 50mg x 6
    Clonozapam 2 mg per day
    Novo-Mirtazapine OD 30mg per day
    [U]
    List of meds:
    [/U
    Hydro-Morph-Contin 12mgs 2 per day
    Pyridium 100mgs 8 per day
    Eltroxin 0.1mgs 1 per day
    Oxycocet 325mgs 8 per day
    Protein Shakes 4 per day
    Probiotics 3 per day

    Crap to Deal With:

    Severe IC for over 20yrs
    Crohn's
    Thyroid
    Warped Sense of Humour
    _____________________________________________
    If your feet smell and your nose runs, you were born upside down!
    _____________________________________________
    IC A CURE!
    Tags: None
  • #2
    I lost about that amount when I came down with ulcerative colitis 7 years ago. Do you have a LOT of diarrhea - with blood in it? I have a hiatal hernia, too. I don't know if they're related or not.
    I didn't know what was wrong with me - I thought I was going to die - 'had lots of stomach pain, too.

    Comment

    • #3
      Another fellow Canadian in distress! You poor thing, I know exactly what you've been going through, I've been misdiagnosed for almost 15 years, have lost 60 pounds in the last 2 years, I have no appetite, if it weren't for "Boost" I don't think I'd be alive today! I think the loss of weight is a combination of the IC, stress, meds, pain and just being run down by having to go through all of this. Like some of the other women who replied, I have also had terrible bouts of diarrhea with blood in the stool, but then they botched my hysterectomy 14 years ago and had to remove a lot of my colon, so that could have something to do with it. Feel free to contact me anytime and hope that I can be of help to you.
      Hugs and prayers,
      Curlette
      ICbythesea
      Hugs,
      Curlette

      Drugs I use now:
      HM Contin 12mg twice daily
      2 mg Dilaudid for breakthrough pain
      Temazepam for sleep
      CES orally

      Drugs I have used in the past:
      Elmiron
      Elavil
      Gabapentin
      Vagifem
      Lomotil
      Ativan
      Buscopan
      Demerol
      Flexeril
      Way too many to list!!!!!

      Medical History:
      Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
      I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

      Comment

      • #4
        Do you think that your pain was related to the IC or to the colitis? My abdominal pain is so severe and I never had pain like that when I was diagnosed with ulcerative colitis. I believe it's IC related and can be very debilitating and dangerous. I've taken a couple of good falls, and now use a cane, to be on the safe side.
        Hugs and prayers,
        Curlette
        Hugs,
        Curlette

        Drugs I use now:
        HM Contin 12mg twice daily
        2 mg Dilaudid for breakthrough pain
        Temazepam for sleep
        CES orally

        Drugs I have used in the past:
        Elmiron
        Elavil
        Gabapentin
        Vagifem
        Lomotil
        Ativan
        Buscopan
        Demerol
        Flexeril
        Way too many to list!!!!!

        Medical History:
        Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
        I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

        Comment

        • #5
          Sounds familiar to me. I lost over 50 lbs. in the first year after developing IC. I was very overweight, however, and attribute my weight loss to following a very healthy IC diet. Then I had to have my very diseased gallbladder removed and was diagnosed with ulcerative colitis (also have a mild hiatal hernia) and pelvic floor dysfunction. Ironically, just previous to developing my digestive system problems, I started gaining weight & have put on a good 20 of those ugly pounds I lost previously. I blame my meds and a change in diet (because of the UC) from being very healthy to low-fiber, high carb and less physical activity.
          Annie

          IC
          Ulcerative Colitis and IBS
          Pelvic Floor Dysfunction
          _________________________________________________________
          Retirement is great! Work is highly overrated!!!
          ---My dear hubby
          ________________________________________________________
          Never go to a doctor whose office plants are dead.
          ---Unknown

          Comment

          • #6
            I also lost a lot of weight during the time I developed IC and was diagnosed. I just plain had no appetite and the pounds just melted. Now, 32 years later, I'm again fighting to try to lose 50 lbs.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.             [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment

            • #7
              I have been losing weight on and off for the last few years. At first the doctor said it was the medicine he put me on (Topamax) but that I should of stopped by now. Then last year I got really sick and started losing weight again. Doctors still don't know whats wrong with me (my IBS -D)has been out of whack! so I went to go see my gastro doctor and he did everything he can do. I am now down to 128 lbs (Haven't weighed this since my first child was born 23 years ago!!-- so between last year and now lost almost 45 lbs). I'm always tired no matter how much sleep I get.

              Comment

              • #8
                Has diabetes already been ruled out? I don't know how all of your symptoms would fit that, but I know one type can cause rapid weight loss along with the fatigue issues you've been having. I hope you find out what's wrong soon.

                Comment

                • #9
                  i have been losing weight like crazy in the past year and a half leading up to this. I had no energy at all, then developed IBS, then IC at the beginning of this year. The Crhistmas b4 last I was completely inactive and ate an obscene amt. of sweets for at least a month and didn't gain an ounce. Then the weight started coming off fairly rapidly. I'm continuing to lose now although I'm eating the same amount I always did (but not the Christmas over-do).

                  I have a hiatal hernia that causes no symptoms and the IBS is under control w/ a strict diet w/ no gluten due to fructose malabsorption seeming to be the cause and I'm still losing weight. I always have eaten very healthy w/ some cheating now and then for fun but now I'm adding things like potato chips daily to put some weight on.

                  I've had low ferritin and zinc until I supplemented for 2 full years at high amounts and if I stop them or lower the dosage I get low again. No one knows why.

                  Comment

                  • #10
                    Weight loss

                    I am newly diagnosed, only started suffering in the past 2 months. My life has certainly been turned upside down and I'm frightened. But I was wondering why I was loosing TONS of weight and have no appetite. Glad to see its not just me! I actually have to force myself to eat. In less than 2 months I've lost 10 pounds. I have always loved food and eat constantly, a wide variety of foods. So this is very strange to me. With all the pills I'm popping, it actually makes me feel sick to my stomach too so that doesnt help. I did just buy some ensure because I'm concerned about my health and I see that someone else on here is doing the same.
                    But it is shocking how fast I'm loosing weight, have no energy either. Feel very run down and weary. I'm sure the stress of being scared and having lots of tests done to you and not knowing why you hurt so bad.

                    Katie

                    Comment

                    • #11
                      Weight loss

                      I just started having symptoms 3 weeks ago and my appetite has been virtually non-existent. I don't know if it's because the pain is so bad or what. I already had pre-existing stomach problems. Have you had a gastric emptying study to look for gastroparesis? I have IBS, GERD, gastritis and gastroparesis which is delayed emptying of your stomach. THey don't know what caused mine but I also have fibromyalgia and bad allergies and I think it's all related. Symptoms of gastroparesis are early satiety, nausea and sometimes pain. There are not many drugs to treat it but the goal is to speed up the motion of your stomach so food empties properly. It is often missed and usually one of the last things drs test for. Charisse
                      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                      Comment

                      • #12
                        Well, I have had no testing done for my stomach. I have always had a sensitive stomach all my life. I have really bad allergies and am on lots of meds to treat them. The doctor just put me on new allergy medicine and it's taking the edge off of my suffering. Also, since I made major adjustments to the foods I'm eating to reduce my pain from IC, I've slowly been feeling a bit better and my appetite is back. Thank God! I'm spending lots of time in the grocery store, reading labels and trying to find replacements for my favorite foods that are more IC friendly. But when I get a flare up, my appetite goes away and I'm sure its just the pain and I am a worry wart so I'm sure it's my fear too.
                        I really noticed a difference in my pain once I switched to eating the correct "safe" foods.
                        Katie

                        Comment

                        • #13
                          What are the correct foods? I have been having so many of the same symptoms you all have listed here. I saw my gyn last week and she said my uterus felt fine but my bladder was "full". I said no its not and she said yes, it is - you need to see a urologist. I have been in a panic with abdominal pain and bladder pain with the feeling like my bladder is coming out of my vagina (sorry if tmi). My legs feel tingly and weak. I am naueous and have IBS with it being mostly constipation. I cannot tolerate meats, OJ, fruits and eat pretty much fiber and carbs but I still have a feeling of being sated so I am never really all that hungry. I am suspecting IC - does it sound like it? I appreciate any answers.

                          Thanks, Vega

                          Comment

                          • #14
                            Hi Vega! I'm new to this all myself, but you will find lots of helpful info on this website. My doctors have been giving me the run-around and my GYN isnt helping me much. I have an appointment this week with a new Urologist who will hopefully help me more. There is a lot of info on this site about the IC diet and once I started to adhere to it, my pain started to go away. So keep researching!
                            Katie

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