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After my J-Pouch in June 2001 I have been getting steadily worse with my overall health. I am constantly being diagnosed with other auto immune diseases and conditions.  I had a blood clot going from my intestine to my liver.  It turns out I have a blood clotting auto immune disease. Next was fibromyalgIa, then gastroperisis, had small bowel obstruction which I had emergency surgery, week after surgery I developed large blood clot in leg and several in both my lungs. Next I was diagnosed with endometriosis then recently crohn's.  Needless to say severe depression and anxiety along with other digestive issues.  I have been on generic relocate for a year. Shortly after starting I developed several painful issues.  From my elbow to fingertips are numb and burn so very bad.  My ankles and feet severely swollen. My lower back is in so much pain walking or standing. Severe itchiness over my entire body. Lastly, I have sudden urgent need to urinate a d can't make it to bathroom. I really need to talk with people with J-Pouch and people with my other issues. I feel so alone and depressed. I live alone and family and friends try but do not understand. I have been given a lot to deal with along with so much pain.  Thank you...Nadine

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I am so sorry you are going thru this.  I do feel depressed and angry because I have always been sick my whole life even when I was a younger child.  Today I was very depressed.  I wanted to help my husband with our rental and I became so tired and sweating to death.  I just don’t get it.  I think the part I hate the worse is the severe exhaustion.  But I do get migraines and severe neck pain.  I do have IC and I do believe it’s an auto disorder. My joints hurt but haven’t went to check it out.  It’s not that bad yet.  I sometimes feel I traded one thing for many others.  But I had pre cancer cells thru my whole colon so it all had to come out.  I guess I get pissed because of all my health issues also.  Some of my friends don’t get it either.  But we are all year to support you and help you thru this.  If you’d like to be penpals thru computer let me know.  I hear your pain though.  Tired of it all.  

I also have been sick since I was a child I just didn't know it. I thought I was normal. You really need to get your joint pain checked. The sooner you find the cause and great it cause it will only get worse. I also have cuffitis. I have also had depression since I was about 10. I am not angry though. I just am confused as to why. Very depressed and sad. I am not the person I used to be and that makes me sad. It was determined by the Drs that I was gonna have cancer but they didn't know when it would happen.  I chose surgery as I was told it would cute me. I was bleeding a lot and in a lot of pain so I believed them. My Drs lied and I ended up trading one problem for 15 other problems.

I also have severe fatigue which limits my activities. I am so sorry you also so sick. I understand what it is like wanting to help family and friends but can't most times because of exhaustion and pain. 


I would like very much to be your pen pal. Therapists have never worked for me but my Drs are pretty much making me. She is specialized for U/C and crohns.  I think what will be best for me is to talk with others like me. I appreciate you reaching out to me and I look forward to getting to know more about you.

I have a lot of problems as well, started with colitis, then had surgery for it. After that had a reversal, got ileus after reversal. Shortly after that got knee inflammation and was diagnosed with arthritis. Had rectoscopy and doc told me that I have Indeterminate IBD, now I'm on Ramicade and just another day doc told me that I have antibodies. I don't know when will I have reversal surgery. Also my abdomen gets hard and bloated after eating. So I understand your problems

I am so sorry Nadine, I is way too much to handle at one time let alone at any time.

Yes, I have also been sick since birth...first surgeries and colostomy at age 2. Closed by age 3 but the damage was done to my colon/rectum. Joint and severe back pain since kiddihood. 

I've got severe food allergies, EDS, a congenital deficiency in collagen that means that my body does not build the glue to hold ligaments and skin together when injured. I am stretchy and pop out of joint constantly, do not heal post-op or post-accident and my spine is very curved...I also have a k pouch. It falls off of the wall regularly, I get hernias like others get colds and things just happen. My mom took DES and the rest is history.

That is my normal. 

Yes, I get angry sometimes that I need to work 5xs as hard as anyone else to get half as much result. Surgery means 6 weeks of sutures and another 6 with murphy-ties and 1 year to heal (or hell)...Keeping a job is hard, I am self-employed so that helps a lot but my job requires that I take public transportation and that adds a measure of difficulty to the mix. 

Depression? Occasionally...usually when I cannot find a surgeon to fix something...or when I am housebound. Less so since menopause (I believe that hormones had a lot to with the depression)

My dad taught me to always keep active and busy and never give in or give up. Busy minds/busy hands. I am an exerciser, doesn't matter where I am or what is wrong...I keep my body active...that helps my mind too. 

I cook & bake a lot for my family even if I can't eat it. 

I write, when all else fails, I keep my mind active...

As long as I am doing something else, I do not think about me and my pain, that is my only secret...I avoid meds at all costs but require a minimal dose of antiinflammatories/pain meds 2xs/daily for life of I cannot tie my shoelaces!

That's life. 

I would have loved to be born normal, but that can't be changed. I would have loved to not know so much pain or surgery but that can't be changed. I would have loved a loving and supportive family but...I had my dad and uncle...they were the best. 

What I can change is how I feel about it all. I scream in the shower sometimes, I workout until I drop, others. I teach and that is the best gift ever. 

You need to find your happy place where you do not feel your pain so much. 

Your mental escape...

That's all I've got...





 I too add my empathy to your situation. None of us got dealt the best health cards and we have to sacrifice time every day to compensate.  I agree with Sharon wholeheartedly. Although I no longer work I do volunteer. I find helping people who are less fortunate than I am allows me to put any problem in perspective. Exercise is critical, especially if you have fibromyalgia, which like you I have.  BTW, there are medications for fibromyalgia that are extremely helpful.

It’s very difficult for others to understand what  any of us have gone through. That’s why this site is like family for me. When I have a problem I do a search and am more informed, which helps me understand and cope with the problem. 

CT barrister: bummer of a disease to have with Covid! Hope you can stay well. 

@CTBarrister posted:

I have osteopenia already from taking Prednisone for 20 years. However it's a spray that I use and I don't believe very much of it is systemically absorbed. It's not the same as taking pills.

Oh my! I am sorry to hear that! I never knew that about you, that must be hard to deal with along with everything else. I would still take calcium/ vitamin D supplements if I were you, that may help it from getting worse. And from I what read, any type of steroid can cause bone loss/weak bones or even eye problems. I think you should take the calcium/vitamin D supplements but it is of course your choice. 

@CTBarrister posted:

I have taken calcium supplements for many years as well as a multivitamin that gives me everything I need, fish oil and zinc.  As far as Vitamin D the best source of it is the Sun, 30 minutes a day.

Glad to hear that! Be careful about the sun though, wear lots of sunscreen because you definitely do not want to get skin cancer after everything we have been through lol. You probably do not need that much sun since you take supplements but who knows really. I personally do not worry about sunlight since I take high doses of calcium and vitamin D. For Vitamin D, sometimes I go up to 3600units in a day.

I have Uveitis, however I only had one bad flare, and its been in remission for 6 years. I also have severe gum recession which my dentist says its from my IBD, UC. For years, if I had a flare that was just crazy, I would loose a tooth. Is a shame of course, but I never had a cavity and my mouth is always clean. I don't have plaque. Strange...but so is autoimmune everything!! Stress is our worst enemy. I feel for all of you. I just keep to an anti-inflammatory diet and that helps tremendously. 

Anybody else have gum issues? 

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