Distention abdomen

Posted by phillybomber @phillybomber, May 9, 2023

I have been dealing with a distended abdomen and my left side has a big lump. It’s almost a year in 10 days I’ve been in & out of hospitals, my test come back that every result is good.
I’m 58 an I look like I’m having twins. Had gallbladder removed it was inflamed, I was told from a pic I sent to GI I have SIBO but I took meds and nothing is helping me I’m very upset my clothes i can’t wear an I don’t want anyone to see me and I haven’t eaten solid food since Nov.9th post op gallbladder removed I gained 8 pounds I’m carrying fluid but not 1 GI doc or Professors of GI knows what is wrong with me my life I don’t have one at all I been on all meds so many endoscopy, colonoscopy I’m so sad I can’t live like this anymore. No one knows how to help me and I haven’t been diagnosed in almost a year!

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@notmoff

I see many people here share your situation and I am one of them. You have my sympathy and share your frustration.

Each Kaiser doctor has their own take on my distended belly - or simply changes the subject when I ask for help.

The gastroenterologist says an x-ray showed feces in my colon which means constipation which means I should take Motegrity. I think this is very unlikely as I understand a high fiber diet (like mine) with constant passage of feces through the colon is often misdiagnosed as "constipation". My internist says I should see a functional doctor - out of plan and out of my financial reach. The pulmonologist says it could be my intestines that are forced up and out due to my severe kyphosis from multiple spinal compression fractures that has me very bent over.

On my own, I have gone to thrift stores for larger size blouses and used decorative scarves in a attempt to disguise my misshapen body so I am less embarrassed when I am outside. Issues you didn't mention were pain - good you don't have it other than the pain of having your body change in an undesired way.

Also a persistent yeast infection caused by the distension creating a warm, moist home under my breast barely reduce by 2/day Nystatin powder.

I plan to try eliminating the gluten in my diet to see what effect it has - challenging for a ww bread, cracker and pasta eater. Also, I may ask for a second GI opinion. Your description of your situation has helped me focus on my own distended belly, unfortunately mostly ignored due to my other health issues.

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There are many good gluten free breads, pasta and crackers in the market.
For bread; Udi’s, Canyon, both come in a couple of flavors and different whole grains and taste great
Crackers: Simple Mills Almond Flour Crackers, come in a variety of flavors
Pasta: I buy pasta made in Italy, brand I love is RAO’S.
Chips: SIETE, grain free, made with Cassava Flour.
You’ll be amazed how far along gluten free products have come. Years ago they tasted like cardboard. Just take the time and pursue the aisles. You will find ones you enjoy and not feel deprived of foods you love.

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@phillybomber

@ rashida mine is on my left exactly same spot as you say yours is, I have to lay on my left side on heating pad 24/7 an I don’t have major pain but I have like one doctor said it’s called a nulling pain, I said it’s like someone with there thumb is constantly pressing on it, but in all actuality 1 year not 1 doctor cares about this oblong lump at first there was 3 now I’m down to 1 only break I’ve had in one year. Last summer I couldn’t leave my house I was so distended and so sick and I swore after my gallbladder surgery in December I was going to be back to myself, lastnight I felt so sick and I felt so sad I cried myself to sleep just trying to think why did this happen, why doesn’t any doctor truly care Oh that’s another issue doctors always say to me well you went to all specialist so there like try them out again. I’m so so sad I don’t know what my next move is.

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phillybomber I hear you! I have been asking for an MRI since a CT scan showed “nothing of concern” but I am in Canada where you only get tests and procedures approved by the government health plan, and since my CT is clear, “an MRI is not necessary”. I cannot afford any out of pocket tests.

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@gigi4

There are many good gluten free breads, pasta and crackers in the market.
For bread; Udi’s, Canyon, both come in a couple of flavors and different whole grains and taste great
Crackers: Simple Mills Almond Flour Crackers, come in a variety of flavors
Pasta: I buy pasta made in Italy, brand I love is RAO’S.
Chips: SIETE, grain free, made with Cassava Flour.
You’ll be amazed how far along gluten free products have come. Years ago they tasted like cardboard. Just take the time and pursue the aisles. You will find ones you enjoy and not feel deprived of foods you love.

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Thank you so much for the very helpful suggestions! I'm finishing off my 2 leaves of bread in the freezer, crackers and ww pasta. If the bloating is reduced, I will try to use this opportunity to replace such processed foods with gluten free grains and root vegetables -
brown rice, quinoa, potatoes, sweet potatoes, carrots, turnips, etc.
Wish me luck.

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@phillybomber

Well seen a new GI yesterday a woman and I asked about my distended abdomen and she examined me seen how I couldn’t breathe bc my ribs are pushing against my diaphragm and she said I can be like that 4 rest of my life and at times there are no answers and seen how my body is full of fluid she didn’t care So I said maybe I have adhesion or Ascites I would really like to start all over again bc I’m still not diagnosed and 5/17/23 was 1 yr and it hasn’t went down, had my gallbladder out on 12/23/22 and I said my clothes I can’t wear I started crying so she suggested I see a therapist and her assistant told me to go shopping it may make me feel better if I by bigger size. I was caught off guard bc I’m known for my mouth I go right back at anyone, I’m extremely upset I cried at middle of appt drive home and all last night and i truly don’t know what nxt move is. So I truly hope it was going to be a great visit and she was willing to help me but she said no. I said I know you can scope me take fluid from small/ large intestines and see what is going on but she wasn’t willing to take it on. I didn’t know or if it is true a distention can stay forever and at 58 I look 6 months pregnant and my answer was buy bigger size clothing

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Just my experience…I had extreme bloating. I also have Sjogerns syndrome and because of that I went on the autoimmune protocol diet. It’s very restrictive, NO grains, seeds, nuts, nightshades….BUT it helped with the Sjogerns pain and my bloating went away.

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@notmoff

Thank you so much for the very helpful suggestions! I'm finishing off my 2 leaves of bread in the freezer, crackers and ww pasta. If the bloating is reduced, I will try to use this opportunity to replace such processed foods with gluten free grains and root vegetables -
brown rice, quinoa, potatoes, sweet potatoes, carrots, turnips, etc.
Wish me luck.

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I do wish you the best. It takes time and being consistent to see results.

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@rashida

phillybomber I hear you! I have been asking for an MRI since a CT scan showed “nothing of concern” but I am in Canada where you only get tests and procedures approved by the government health plan, and since my CT is clear, “an MRI is not necessary”. I cannot afford any out of pocket tests.

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I’m so sorry to hear that but in all actuality MRI I had an MRE which is just of your intestines and honestly it showed exactly what CT scan showed so don’t worry I know it’s hard, I just found another GI doctor I pray he will see me I need another GI doc but I’m not going to get my hopes up bc I been told no to many times and it’s so sad that no doctors want to help someone who is sick Doctors take an oath to help people but in Philadelphia they can careless and I suffer and I can’t go out I refuse to I’m so sad and the fatigue and I don’t care about anything much anymore I’m so depressed over this that I don’t let people see me only my daughter and sisters and mom but I’m so frustrated with it all.

REPLY
@phillybomber

Well seen a new GI yesterday a woman and I asked about my distended abdomen and she examined me seen how I couldn’t breathe bc my ribs are pushing against my diaphragm and she said I can be like that 4 rest of my life and at times there are no answers and seen how my body is full of fluid she didn’t care So I said maybe I have adhesion or Ascites I would really like to start all over again bc I’m still not diagnosed and 5/17/23 was 1 yr and it hasn’t went down, had my gallbladder out on 12/23/22 and I said my clothes I can’t wear I started crying so she suggested I see a therapist and her assistant told me to go shopping it may make me feel better if I by bigger size. I was caught off guard bc I’m known for my mouth I go right back at anyone, I’m extremely upset I cried at middle of appt drive home and all last night and i truly don’t know what nxt move is. So I truly hope it was going to be a great visit and she was willing to help me but she said no. I said I know you can scope me take fluid from small/ large intestines and see what is going on but she wasn’t willing to take it on. I didn’t know or if it is true a distention can stay forever and at 58 I look 6 months pregnant and my answer was buy bigger size clothing

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I had similar issues with bloating and found help from a Functional Medicine practitioner. She advised me on diet restrictions. Most likely your problem is not actually your intestines - but it's how your body is handling what you eat. It's not easy but definitely worth the effort!

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@phillybomber

I’m so sorry to hear that but in all actuality MRI I had an MRE which is just of your intestines and honestly it showed exactly what CT scan showed so don’t worry I know it’s hard, I just found another GI doctor I pray he will see me I need another GI doc but I’m not going to get my hopes up bc I been told no to many times and it’s so sad that no doctors want to help someone who is sick Doctors take an oath to help people but in Philadelphia they can careless and I suffer and I can’t go out I refuse to I’m so sad and the fatigue and I don’t care about anything much anymore I’m so depressed over this that I don’t let people see me only my daughter and sisters and mom but I’m so frustrated with it all.

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@phillybomber - in Canada you need a referral from your general physician to see any specialist. If the physician does not see a reason for you to see one, you don’t get the referral. Physician, of course, is only following government health plan guidelines. In Ontario there is a shortage of physicians so if you are not happy with one, you cannot find another.

I live in Ontario. My husband and I moved a two hour drive out of the city and here there is an even bigger scarcity of physicians and specialists. We have been without a physician here since we moved seven months ago because no physicians are taking new patients. Because of the shortage, they already have more patients than they can handle. My physician in the city is still willing to see me - only till I find one here - but I don’t drive, which makes it very inconvenient. She can do phone consults for an existing problem, but for a new one, I would have to make an appointment.

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