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01-29-2017, 06:00 AM   #1
crohns4ever
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Very Hard Time Right Now

It seems like a long time since I need to vent but had my colonscopy two weeks ago my Gi said my small bowel was good but found a stricture in my large and did the bollon dilation. He said I should be good just to stay away from seeds, fruits. But I have lost a lot of weight down to 90lbs. so I was placed back on predasone again. But nothing seems to be working for me I go to the bathroom like every time I eat but it has gotten a little better it was like 20 times a day. He has recommended surgery again don't really won't that but who does. And yesterday I started to have air coming out of my private when I pee and this morning I found some stool coming out of it. I am only 38 years old having to wear adult depends is like being a child again. I lay in my bed and try and cope with it but I always get down and scared about my body looking like a shack of bones.
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01-29-2017, 06:41 AM   #2
ronroush7
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I am sorry.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
01-29-2017, 08:40 AM   #3
ronroush7
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I have worn adult diapers for the last six, seven years and I wish I could wear regular underwear.

01-29-2017, 11:07 AM   #4
crohns4ever
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Yeah it's kinda ok of wearing them I guess it's better to trash them instead of boxer's. Crohns can be evil a lot of times. This has to be the worst flair up I had since my surgery back in the day.
01-29-2017, 12:38 PM   #5
ronroush7
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I hope your doctor can get you in remission soon.

01-29-2017, 12:46 PM   #6
crohns4ever
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Me to my friend I'm tired of being scared and depressed a lot of the time for the last couple months. Ronroush have you been in a lot of flairs? How do you cope when things get hard to handle? My problem is I have no one to really talk to besides all the good people on this site which is a blessing.
01-29-2017, 01:00 PM   #7
ronroush7
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The first flare, after I was diagnosed with Crohns, I remember going into my room and saying "why me.". This site is always available. Yes, I have a history of fistulas. I do a lot of praying and visit this site when I am flaring. I wish they had had it when I was first diagnosed

01-29-2017, 01:18 PM   #8
Tuff
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I'm sorry you're having such a hard time. Have you talked to your doctor about the latest development? It sounds like a bladder fistula, and you should have that looked at right away. It's going to cause an infection. Depression is sadly very common in Crohn's patients. Talk to your doctor about that too. Are there any local support groups you could join?
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
01-29-2017, 01:23 PM   #9
crohns4ever
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Yeah I pray a lot to. I then found this site which I am still learning to use I hope they don't throw me off still learning how it works. I do have fistula crohns not mild. This is the second time I had poop coming out from my private part not fun you know. But all the weight I have lost has took a toll on me kinda weak I go in the morning to have nutrition if run in to see if that helps any fingers crossed. And to have two units of blood.
01-29-2017, 01:30 PM   #10
ronroush7
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What meds are you on? I hope your doctor can get you in remission soon.

01-29-2017, 01:30 PM   #11
crohns4ever
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No I can not find a chapter in my local very small town just this wonderful site which is a blessing to me a lot of support on here. But yeah I am going to bring it up to him in the morning. Thanks to you all for the support. It may sound weird but I find more support on here then any where else.
01-29-2017, 01:30 PM   #12
ronroush7
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I'm sorry you're having such a hard time. Have you talked to your doctor about the latest development? It sounds like a bladder fistula, and you should have that looked at right away. It's going to cause an infection. Depression is sadly very common in Crohn's patients. Talk to your doctor about that too. Are there any local support groups you could join?
Agree

01-29-2017, 01:33 PM   #13
crohns4ever
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Remicade and 6no and the devil it self predasone hope I kinda spelled it right.
01-29-2017, 01:33 PM   #14
crohns4ever
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6Mp
01-29-2017, 01:40 PM   #15
Tuff
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I was down to skin and bones at one point too. Then prednisone made me overweight and I had to go on a diet. It's a nasty drug if you get side effects, but it worked for me. I went to a nutritionist to tweak my diet, and had to go on supplements for a while. I don't really talk about Crohn's anywhere but here. People think its IBS and offer quack "cures" that infuriate me. I also went to physio, and it really helped my general well being. Do what you have to do, to get better.
01-29-2017, 01:46 PM   #16
crohns4ever
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Agree with you 100 percent, sometimes days are just hard you know. Yeah I hate all the quick cures people throw around.
01-29-2017, 03:03 PM   #17
Tuff
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It is hard. It changes your whole life. I didn't sign up for this. I still struggle, had a white night last night, thinking about things until 5 a.m. Then I try to get up and keep going. There's light at the end of the tunnel, even if you can't see it right now.
01-29-2017, 03:32 PM   #18
crohns4ever
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Yeah I have been doing that a lot her the last few months I don't get enough sleep cause of it just lay in bed thinking and end up crying untill down in the morning. But I do believe in the Lord above has a plan in place I know he wouldn't give me more then I can't handle but I sometimes ask why. But yeah there is light at the end. But yeah it's very hard right now. Really hard. I wish they would find a cure for the dreaded crohns.
01-29-2017, 04:08 PM   #19
Tuff
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I'm Finnish. When things get tough, I try to get in touch with my sisu. It's a Finnish word which loosely means stoic determination, grit, bravery, resilience, and hardiness. You're stronger than you know. You can beat this. And it helps to vent and get it out. Talk to your doctor too.
01-29-2017, 04:35 PM   #20
crohns4ever
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I agree with you I do have a very good nurse who listen to me all the time she said I am here for you 100 percent. Hey tuff thanks for taking your time and sharing your input on things. It really means a lot to me right now. Thanks again.
01-29-2017, 05:15 PM   #21
cmack
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I was down to skin and bones at one point too. Then prednisone made me overweight and I had to go on a diet. It's a nasty drug if you get side effects, but it worked for me. I went to a nutritionist to tweak my diet, and had to go on supplements for a while. I don't really talk about Crohn's anywhere but here. People think its IBS and offer quack "cures" that infuriate me. I also went to physio, and it really helped my general well being. Do what you have to do, to get better.
I totally agree with you! People thinking it's IBS! And the Quack cures bit too. It infuriates me too! People can be so rude without even realizing it!

Peace,

cmack
01-29-2017, 05:24 PM   #22
cmack
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It seems like a long time since I need to vent but had my colonscopy two weeks ago my Gi said my small bowel was good but found a stricture in my large and did the bollon dilation. He said I should be good just to stay away from seeds, fruits. But I have lost a lot of weight down to 90lbs. so I was placed back on predasone again. But nothing seems to be working for me I go to the bathroom like every time I eat but it has gotten a little better it was like 20 times a day. He has recommended surgery again don't really won't that but who does. And yesterday I started to have air coming out of my private when I pee and this morning I found some stool coming out of it. I am only 38 years old having to wear adult depends is like being a child again. I lay in my bed and try and cope with it but I always get down and scared about my body looking like a shack of bones.

My goodness! I'm here for you. I'm also 38 and incontinent, refuse to wear the damn diapers.... too stubborn! So I hardly ever get out. I only have certain times I consider somewhat "safe." My heart goes out to you. I'll be your friend. We have a few things in common, maybe more than we both
know.


wishing you better health and offering my support,

cmack
01-29-2017, 06:53 PM   #23
crohns4ever
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Yeah cmack sent you a message but my computer spell check put crack or something, but I think we all have some of the same problems. What have been one of your worst flair up and what do you do to cope with it?
01-29-2017, 07:54 PM   #24
cmack
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That's OK for calling me crack! I realized it was just a typo. LOL!

Maybe crackpot would have been better. Ha!

My worst flare was 5 fistulas, one big drainage tube for a huge abscess, two fissures, several Hemi's and three setons.... on top of sepsis(all at once). So ya kinda bad. Oh yeah and a really bitchy nurse for a week at a time to boot!(got the same one for 10 surgeries) all the others were cool though. she forced me to walk around and called me Laddy! The walking hurt but probably helped prevent a clot that could have killed me so I guess she meant, and did well. LOL! (drove me half way around the bend in the process). I got through it with lots of morphine, lactulose and lots of rest.That went on for a couple years to recover to about75%.

Other than that I just tried to be busy. Reading, organizing, small little jobs that made me feel like I could accomplish something myself. I also began to educate myself online and found this forum. I learned how to eat better and took lots of hot salty baths. Somehow I made it. I truly think stress is our worst enemy so I also started Valium and a bit of yoga (certain parts of yoga aren't for me).

I'm happy to say that I've come a long way since then. At least my disease has been in relative remission. I had my outer sphincter cut to stop the recurring fistulas going through it. That's what caused the incontinence. But it is what is. At least I'm alive and not in the hospital with my butt sticking out of a gown being called "Laddy"!


Hope you do well my friend,

cmack
01-29-2017, 08:06 PM   #25
cmack
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Forgot to mention my "powder therapy"! I got more into the shooting sports and also archery. I don't hunt anymore. Now I just kill clay pigeons and tin cans! It's nice just to go for a drive and be outside while doing it too.

cmack
01-29-2017, 08:24 PM   #26
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I am so sorry you are going through this. I think we all feel depressed and lonely at some point due to this awful disease. Finding people to talk to who understand is so hard and I feel like they would view me as whining. Prednisone is the worst drug! I hate when I have to take it any longer than a week. I was on Remicade and 6MP but I developed antibodies to Remicade and had to change to Humira. That didn't work so I am now on Cimzia. How long have you been diagnosed?
01-29-2017, 08:44 PM   #27
cmack
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I know what the rack of bones feeling is too,

I'm 6'1'' and 185 now. at my worst i was 129 and feeling like the wind might knock me over, so then with the drugs and lack of working out/physical activity i went to 255 I felt disgusting and fat. I'm a bodybuilder and mixed martial artist(mainly Judo And Greco- Roman wrestling but I have studied other disciplines) and I felt horrible. I went from the best shape of my life back to grade 8. Still working out but not like I used to. I love to work out.

Still compared to some people I am blessed.

Amen.
01-29-2017, 08:47 PM   #28
ronroush7
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I know what the rack of bones feeling is too,

I'm 6'1'' and 185 now. at my worst i was 129 and feeling like the wind might knock me over, so then with the drugs and lack of working out/physical activity i went to 255 I felt disgusting and fat. I'm a bodybuilder and mixed martial artist(mainly Judo And Greco- Roman wrestling but I have studied other disciplines) and I felt horrible. I went from the best shape of my life back to grade 8. Still working out but not like I used to. I love to work out.

Still compared to some people I am blessed.

Amen.
At my worst, I bled for three months and went from 157 lbs. to 123

01-29-2017, 08:55 PM   #29
cmack
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ronroush7

You know what it's like too I see. Thank God you are doing a little better.

Your bud,

cmack
01-30-2017, 12:48 AM   #30
crohns4ever
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Thanks cmack you make me feel better a lot.right now I am scared of getting sepsis. I'm glad you pulled through and things are better for you. Every time I'm in the hospital I always have a bad nurse you know.I'm trying to send you the private message but it's snowing here so internet working slow or it's just me.
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