Avoiding a ostomie

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Cirno
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/8/2010 12:25 AM (GMT -6)   
Hi, I'm posting on this board because right now I don't know whats wrong with me. I only know what I want to avoid. I thought I'd share my story here and maybe get some feedback, because right now I'm completely alone. I'm a 24 year old guy and I'm very poor. I live with my dad, who lives off SS and a small navy disability pension. I don't have insurance or a job and it seems like even basic care is out of my reach.

As for whats wrong...I'll start from the beginning, as I feel it's important to understand how things have gotten the way they are. These are admissions I haven't and probably won't make to my family. For about 4 years I have been afflicted with a fetish for "Belly Inflation". If you don't know what that is, just go on youtube.com and do a search with those words. It boils down to using air and water enemas to make the belly look distended. Myself, and a lot of others I think, don't really know where to stop. I stopped only when I thought I may have hurt myself. Since March I have been officially 'inflation free'. My memory gets a bit hazy about exactly when, but I noticed that I was becoming distended and bloated feeling and stools became less frequent. Then, about 6 weeks ago I became completely constipated. I never felt like that in my life, and it was a really horrible feeling. I felt pressure in my chest, sides, everywhere. I finally performed a regular water enema to clear myself out even though I swore I'd never stick anything up my rear again. Then for a few weeks now I got on this revolving door where I take a stimulant laxative like Sennosides, clear out, feel normal for a couple days, then slow down and stop up again. I started doing my homework, learning what constant use of a stimulant laxative can do. I got scared and cut everything out and just waited. I made it about 5 days before I felt so constipated I couldn't stand it. I went into the ER and the doctor there did a physical exam where he tapped my belly, listened to my gut, ect and a X-ray. He told me that I was constipated all the way up to where the colon crosses the front of my belly and mentioned my Liver looked enlarged. He said I 'sounded fine' and didn't feel any abdominal masses. He prescribed Miralax and told me to use Magnesia Citrate to clean myself out.

Since then, for about 2 weeks now, I've been taking Miralax once a day. I'm having bowel movements but they don't seem to be keeping up with intake. I'm trying to keep a diet pretty high in fiber like the doctor said, so I've been eating a lot of cereal, mashed potatoes, prune juice, ect. Once every 5 days I take a stimulant or a small enema to get things to 'free up'. Today, I developed a intermittent stabbing pain under my right ribs, as if my Liver was hurting me.

I don't have insurance, a regular doctor or any money/savings to get help. The ER doctor gave me a reference to a local GI doctor when I said I didn't have a doctor. He said "Now you have one" like it was a done deal. What a joke...I called the doctor and the lady on the phone tells me its $200 to walk in. Any tests or exams are more. After our bills are payed we have about $500 to last the month. We can't spend all of our grocery money on a single doctor visit. I used to actively look for a job but now I spend hours in the bathroom and the rest of the time I feel miserable. I got in touch with the local Good Samaritan Clinic but they told me there is a 8 month waiting list to see a specialist.

I don't know what to do, all I know is I don't want to lose my colon. I miss waking up out of bed and feeling hungry though. I got this feeling like whats wrong with me may just be a simple fix, yet there has been a giant wall placed between me and the doctor that has my solution. If anyone has any knowledge of what might be wrong with me and who or where I should go see to get help, I would eternally be grateful for the advice.

...

The worst part of all this is I probably brought it on myself. That makes me feel really terrible, seeing how many of you have problems like this and never did anything to warrant them. It's my fault I'm like this...I just hope someone can help me now despite me being such a loser. I'm sorry if my story offends any of you. sad

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/8/2010 8:22 AM (GMT -6)   
Welcome to the site! I am sorry for your condition and it must be frightening to be ill and not have insurance. I think your only saving grace will be to get insurance. What state or country do you live in? There might be resources available to you that you are unaware of. No doctor is going to see you without some type of plan or can pay by cash which is out of the questions. You really need to be treated. Is your health condition what causes you not to work? Did you have a job before you got ill?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/8/2010 9:43 AM (GMT -6)   
Im not really sure i understand what make you think you have to have surgery,but i agree that you are gonna have to get insurance before you do anything. because if you do end up needing surgery my bill was like40k
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 6/8/2010 10:59 AM (GMT -6)   
The best suggestion I can make is locating a hospital in your area that treats people that cant afford their bills. For example, I live in Los Angeles, and we have Harbor UCLA medical center. When I was first diagnosed with UC about 7 years ago, I too was broke and had no insurance. I went to Harbor and had the full battery of tests done, and had a 5 day hospital stay. They got me fixed up. I few months after going I got the bill of around $36k, but that was reduced to under a thousand dollars because of my financial status.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/8/2010 11:58 AM (GMT -6)   
You may need to up the miralax. It is safe to take in large amounts. I take 2 to 6 doses of miralax everyday due to colonic inertia, a slow colon. Hope this helps.....

Cirno
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/9/2010 3:45 AM (GMT -6)   
Sue - I live in Florida, and no I lost my job a few months prior to getting sick. I was in the middle of getting ready to go to USF (Pell grant + federal loan) since I got my AA in December at my community college.

Socal - Thanks, I'll give that a shot. How did you find out about Harbor? Where would I go to find out about an equivalent?

Answers - :s Miralax is pretty expensive too, but I'll take your advice and up the dosage to twice a day and see if I get some movement.

i have a question about insurance. Wouldn't what I have now be considered a pre-existing condition? Doesn't that make it really hard to get insurance?

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/9/2010 6:03 AM (GMT -6)   
You haven't been diagnosed yet, and the ER doctor said you were fine, so not sure that it would be considered a pre-existing condition. I don't know for sure how that stuff works
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/9/2010 9:05 AM (GMT -6)   
Any of your local county hospitals that are affiliated with a medical school are usually the hospitals that take care of the indigent. However, you aren't even diagnosed yet so don't jump the gun. I would check your state's website and look for medical assistance through them. Medicare is an option and there might be a state program too. I'm not familiar with FLA healthcare. You need to start you journey by going to a gastroenterologist.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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