Vasculitis UK
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Sorry but 'Tummy Troubles' again

A while ago now I 'Opened a Can Of Worms', as regards Tummy Troubles. Yes I, very definitely, found out that we ALL have/suffer Indigestion, Constipation, wind (gas) and necessarily Pain. I have been, quite badly, 'Plugged Up' today though I have now 'Been'- with the help of Vaseline, and my finger!

I did suggest that we had a Pole, about these 'things', at one stage but no-one seemed too keen. Perhaps, in the light of all the Comments, may I suggest it again? I would be interested to hear if opinions have changed.

I look forward to hearing from 'everyone', hope Everything Come Out OK.

Kindest wishes

AndrewT

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I was not thinking of a poll, but I was wondering when my digestive problems started. And why no one has really asked me about them, not even Dr Meyer the eye doctor who asked me about everything else. I'm having a gastroscopy in a couple of weeks and, while I'm hoping as always for Normal, I also want to get relief from the reflux.

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CosmoCol....................

Pred, enteric coated or not.

The non coated can cause stomach problems.

If on them wash the dye off them before taking as sometimes that can cause problems.

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Wow. New to vaculitis, just dx'd, going to specialist for heart test and sonogram of veins? My blue feet have been ignored for 2 years now until I saw my new doctor, actually she is a nurse, and immediately took charge when the Rhuemy has ignored this?? Along time of unnecessary suffering! Along w lupus/scleraderma....

I'm writing because I had told her embarrassingly all what you just wrote and that also I can't urinate.. See I can't urinate and oddly have so much air.. And can only get relief when she started me on prednisone... That's what I was there for and unbelievable prof used sweating.. I had only took my shoes off because my feet were literally wet, hair, sweating everywhere and was showing her, and she was like omg how long have your feet been purple. I was like oh, 2years???

Could you tell me about some of or all your symptoms?

I'm trying to learn about this.. I feel so sick?! And what they put u on? I was put on adalat?* By heart and vascular Dr until I have test done wed.. Also should I tell him all the strange symptoms?non stop gerd , bp crazy, twisting contractions down my throat, I found out I have so many odd things and no reason for them? There's so many.. But I'm so sick of being sick. I need some support because as I've said all along on here I'm dealing w this completely Alone! This site is the only support I have!

Thanks so much!

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I hope you will get to a place where you can change from "lonelyone" to "Well one."

Of course, now that you have a nurse who appreciates what you have been going through, maybe you could ask her to write a summary of what she saw and what she heard so you can carry it with you to show the doctors who don't listen. And keep her telephone number in your purse to leave with a doctor who you think is blowing you off.

Not being able to urinate can cause uremic poisoining and kidney involvement is a specific involvement with vasculitis. I hope you are on the right track now.

Keep us in the loop. Best...

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Thank you. That was so kind.. I appreciate you responding so kindly.

😢😔🙏Ali

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Hi lonelyone, lovelyone,

I have noticed that doctors in the US don't examine patients anymore; e.g.. no one asked to see your feet; some don't even listen to your heart and breathing; and when it comes to anything that has to do with urination or bowel movements, the subject does not come up unless the patient brings it up aggressively.

I think in a way, we all deal with it alone, at least emotionally. I have a nice daughter nearby, but I don't want to impose too much because she works, has a 12 year old, and she has rheumatoid arthritis. I know she will always be there for me if I need her and vice versa; My first husband died 6 years ago, my parents are gone and I took care of their problems.

I never thought I would remarry , but I did . My husband is a French citizen 10 years younger than me, and now has his US green card. He doesn't speak English , but my French is good enough; before the marriage, I did a Google translation and explained the disease and made the point that I have no energy and am very fatigued. He said none of that mattered to him.

He just seems to sense when I am having a really bad day, and keeps checking on me; he has taken over all the household responsibilities, laundry, cooking, dish washing, gardening and cares for our cat.I do some small tasks and pay bills ; I help him when I can.

We had known each other for 7 years and met in French St. Martin where he lived, but born and raised in Normandy. We hired him to do some work on a vacation home, and then asked if he would mind the home in our absence. When my husband became very ill, I sold the house.

After my husband died I spent 15 months alone and grieving; and recovering from a surgery. I started to feel a little better and decided to go to St.Martin for 10 days to visit old friends from our time there and stayed at a hotel . We ran into each other by chance and became a couple.

He makes me laugh when he calls prednisone," parmesan". I realize how lucky I am ; and I can imagine how awful to be alone , especially with a disease. Have you no neighbors, family or friends, church?

You have me for a friend; my name is real name is Andrea, And you can email me at madame.acarb-adam2017@comcast.net any time. Please feel free.

Life has both good and bad surprises, and maybe you will meet a good friend nearby; I think you are a very kind and caring person. A good friend could be just around the corner for you. I pray for that for you.

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Awww!! Well u just gave me some hope also!

I have decided I am never dating again.

And your right I just got home from ER, I passed out at Dr's today, our hospitals are terrible!

I love your love story!!!

I'm actually French!! I can't speak it tho, lol!

My mom is French...

I would give anything in the world to someday move to the UK!

My dream.

I get my only support on here? Its crazy..

Thank you for such kind words so much!! Ali

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🍃🌹🌹🌹🌹🌹🍃

🍃🍃🌹🌹🌹🍃🍃

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Hi Lovelyone,

Where do you live if not the UK? Austrailia? What caused you to pass out? Are you ok now? I hope so. I think all hospitals are terrible, but sometimes, we need them.

I get the feeling you are young. Am I right? What do you do with yourself?

I could live in France with my husband, but he prefers it here! I love to travel, but with this nasty illness, I can't manage right now. I just don't have the stamina or strength to walk long distances or help carry heavy stuff now.

The mystery of life , and it makes no difference at what age, is that there are always surprises. Love will come to you; you don't need to go looking for it if it's meant to be.

We can all learn to be happy with ourselves too. I like my solitude to read and write on this blog as an example, read, and dream of return to my former health. I think my new rheumatologist plans to increase my Prednisone which did help me at a higher dose than what it is now when he has all blood tests results back.

Let me know how you are. All you need is hope, nothing more.

🙋🙋🙋🙋🇺🇸🇺🇸🗽

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Hi Andrew. You are quite clever even with tummy troubles. Maybe a Title like Poopy Talk, Potty Chat or a more discrete Men and Ladies' Room.

We have no trouble about talking about all things physical here, but not being keen on a "pole" probably has to with repressed childhood toilet training traumas, or a repressed memory of pooping out of turn leading to a parental or teacher punishment.

Best cure is Prevention: daily 64 oz. non- carbonated fluids, high fiber diet, 2 to 3 stool softeners at bedtime, a good quality digestive enzyme, and for chocolate lovers or sweet lovers, diabetic chocolates with mannitol. Psyllium husk supplements are natural and effective over a few days, sofetener suppositories (not laxitives), good quality pre and probiotics, not to mention prunes, prune juice, and senna, a natural gentle laxative. Don't expect it to work overnight as promised, but will work if you drink water and give it time. Coffee helps some. Fiber One Bars work and taste good.

A dose of Methotrex will give the opposite effect so unless prescribed, don't go there either.

Be careful not to become dehydrated; seriously ,dehydration can kill. If none of that works, see a gastroenterologist; it could be a blockage which requires medical/surgical intervention.

From the Girls and Boys Chat Room Polling Station

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Ps. 🚽🚽🚽💣

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Actually, I am glad to hear someone bring up the men's and women's room issue. For the past 10 years until November I was on a DMARD for the prior diagnosis of RA, called Sulfasalazine or Azulfadine, which coincidentally is used for Chrons Disease so it cleared all my IBS or IBD problems for 10 years. But since I was feeling so little pain in November and went off it and went off the Leflunamind (Arava) chemo. Then in December, probably because I took away the immunosuppressants, the P-ANCA vasculitis, called MPA, attacked me all over big time. Diagnosed, thankfully early, on January 19th after blood work that a very wise Rheumatologist thought to have done, and then started right away on 40 mg Prednisone, which decreased to 30, then 20 every two weeks, then 10 in April. Added Methotrexate end of January, and stopped after April 1 due to serious problems cropping up. Almost died for MPA hitting my lungs - hospitalized 8 days. As long as I had an immunosuppressant and higher dose Prednisone, my potty issues on the backside were fine, but when I came back from the hospital after such high doses of antibiotics and then high high cortocortisoids (methylprednisolone), I was super messed up for a couple weeks with constipation and bad gas, then the other way and bad gas. No new normal even to adjust to now. I do have an upcoming appointment with a Gastroenterologist, though.

And, have to add, this is getting to be a real big problem - lack of control to make it in time to the loo, and the greasy issue. But maybe part of that is that I began Retuximab infusions on May 16, and had second one on May 30th. ??

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It comes down to getting to a point where we don't know what is causing the symptoms: the drugs or the disease. Two out of three doctors were not happy about me being prescribed methotrexate, one a hematologist, and a new rheumatologist. I am not sure why, but it didn't seem to be helping after 13 weeks, except to give me nasty trips to the bathroom. You don't know howw many pairs of undies I have thrown out.

When a new round of bloods are back, I think he is going to up my Prednisone and already hinted to stop methotrexate. I was on Azanthopine for 2 days and nothing but vomiting. I felt it was killing me, and stopped it. I have been feeling under medicated for a long time. Even today, I am lying down with my tablet and my legs are hurting without moving. And why does one finger hurt and not the other.?

These diseases are demonic. I know it's not cancer, but it could be in how serious it is and the drugs they prescribe for it. I really don't think the researchers have got a good grip on this disease; they are trying, but because they are so rare , not much money is allocated to for research.

And after 18 months, my diagnosis is unclear; C- ANCA antibody, but symptoms are PMR/GCA with normal SED rate and CRP. As someone said, wiser doctors go with symptoms, not blood tests when tuning are not neatly fitting together. They are all serious.

I read that in Chinese Medicine, they treat all autoimmune diseases the same with ant-inflammatory herbs and acupunture. Maybe they are right; they are all diseases of inflammation so It seems better to treat inflammation with anti- inflammatories and pain with acupuncture, rather than using cytotoxic drugs.

Fortunately, I so far have no lung or signs of kidney problems, but musculoskeletal pain all over and debilitating fatigue.

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Wow! I feel ya!

Mine are back n forth and gas. Ugh!!!!

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How are you lovely girl? What is going on with your issues; you were in hospital not long ago. How are you now?🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷

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I have been helping my Mother, to 'Move Home', seemingly for 'Ever' recently. This has NOT been helped by, equally endless, tummy problems- NOW I can hardly STOP 'Going'! Have I had any Accidents? You bet I have! (Just to add, to the 'Fun', I wet the bed, on Friday, too.....Happy Days!!!) No doubt, knowing me, I'll be back to 'Straining For England' soon enough!

Enjoy the weather even though we can't get much sun, actually on us, oh well!

Best Wishes anyway.

AndrewT

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