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Crohn's Disease Forum » Support Forum » Recent colonoscopy not looking good


04-30-2016, 09:04 PM   #1
BigBoss
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Recent colonoscopy not looking good

I had a resection surgery 6 months ago. Just had my colonoscopy and there are 4 seperate new areas withnewly formed ulcers. I am happy to find this out, only because I have been experiencing pain and discomfort for some time now following recovery from surgery. All other tests and imaging pointed to no inflammation. The pain management docs said they didnt question whether I was in pain, but they were always quick to point out there were no markers to indicate active disease. However when i spoke with my g.i. doc, i asked her if just because there are no signs of inflammation, does that mean that the crohn's is not still actively putting stress on my body? To which she told me, that it is very much possible and more probable that my disease is still very active and she told me just because all my numbers looked good from my labs, she still told me that my disease is very agressive and that i may never feel like i did before all this happened. So, i am just feeling extremely discouraged. I have been on humira since end of december. I am just super depressed. I hate, absolutely hate eating, which sucks, cuz i abdolutely love food. I have had D that is similar to boiling hot acid for the last 6 yrs and I am starting to think that I may have to rethink my line of work. I just cannot take the stress and the fatigue that i am enduring is debilitating, and also contributes to my severe depression. I have gained weight since before my surgery. Before surgery, i was 118lbs, and now i am holding steady at 140lbs, before my initial flare, i was about 150-155lbs. I just dont know what to do. I have no life. And i dont see a future for myself. Just wondering if anyone else has felt like this, which i am assuming is a stupid question. I posted something similar to this recently. I know i need to speak with a therapist or counselor of some kind sooner than later. Its just hard to trust anyone, especially to be completely honest with everything and not feel like i am going to regret it in some way or another. And lastly, as bad as it is to do, i cannot atop stressing out, about money, job, future, the fact that pain meds help me feel more comfortable and how docs keep mlsaying how they are not good for crohn's but for me they are the one thing that helps, i stress on so many things. Anyway, i dont know what im asking, i think i just need to vent or something. I dunno, thx for reading if u did
04-30-2016, 09:46 PM   #2
ronroush7
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I am sorry for all that you are going through. I think a therapist would be a good idea!. I know what you are going through.
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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.

Last edited by ronroush7; 04-30-2016 at 10:48 PM.
04-30-2016, 10:02 PM   #3
Tuff
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I'm sorry you're having such a hard time. A career change could make a big difference, it did for me. I'm making less money, but don't have that pressure and deadlines anymore. Pain meds are a dangerous path. I know two people who got addicted after a back injury, and it totally ruined their life. Look into things like meditation, yoga, walking, anything that you find calming. Talk to someone. It gets better.
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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.
04-30-2016, 10:43 PM   #4
BigBoss
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I am aware of that path, and part of me wants to say effff it, i dont care anymore. Then theres part of me that does care, and then i wonder why i should care, i have no energy to do the things i used to love to do. I just dont feel like myself, and have lost hope that i will ever feel well again, so im willing to trade that riad to feel better. I know how bad thst sounds, but i dont feel like i have anything to live for, but feeling like crap and going to doctors appointments... oh and the constant getting stabbed with needles...
04-30-2016, 10:47 PM   #5
ronroush7
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BigBoss, you have support from everyone here.

04-30-2016, 11:05 PM   #6
BigBoss
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Thx ron, i appreciatr it, but i just want to give up. And i hate saying that cuz i dont want it to be like im just seeking attention. I hate what life has become, because it feels far from what my life was like, or what life seems like it should be.
04-30-2016, 11:06 PM   #7
BigBoss
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Im just surviving.... and for what
04-30-2016, 11:14 PM   #8
ronroush7
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Im just surviving.... and for what
Sending support.

05-01-2016, 12:24 PM   #9
Christi
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Bigboss im sorry that you are feeling this way, dont you think that speaking to a therapist could help you in some way? Im in therapy and im also working through allot of things now im not getting better and everytime theres something new and its test after test. You are allowed to vent and speak your mind it helps. I hope that you could feel better :-) im sending support your way
05-01-2016, 01:03 PM   #10
Tuff
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Don't assume that this is as good as it gets. Doctors have been wrong before. Maybe Humira is not the one to put you in remission. Six months should be long enough of a try. What else could you go on? Is medical marijuana legal in your state? That could alleviate some stress and help you sleep and eat. We have a forum for that somewhere. I'm not at 100%, but I feel better than in years. This disease is like a roller coaster with its ups and downs. Ask for help to get over this hump.
05-01-2016, 02:48 PM   #11
BigBoss
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Im in cali, and medical mj is legal, and ive been around mj since i was 13, stopped smoking the day before my surgery in sept of last year. Because i get pain meds from pain management, its not ok to smoke or consume mj. I would rather take the meds cuz they make way more of a difference. I just wish i could take more.
By the way, i was on remicade before humira, and i sent my gi doc an email about if i need to follow up or what the next plan of attack is. By the eay she did mention that i may never feel 100%, but this is far from 100%. I lie around all day everyday with absolutely no energy. Thx for all the support and i may benefit from a therapist, but wont know til i try. Just need to make an appointment i suppose. They just never seemed to help in the past.
05-01-2016, 02:50 PM   #12
BigBoss
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Im in cali, and medical mj is legal, and ive been around mj since i was 13, stopped smoking the day before my surgery in sept of last year. Because i get pain meds from pain management, its not ok to smoke or consume mj. I would rather take the meds cuz they make way more of a difference. I just wish i could take more.
By the way, i was on remicade before humira, and i sent my gi doc an email about if i need to follow up or what the next plan of attack is. By the eay she did mention that i may never feel 100%, but this is far from 100%. I lie around all day everyday with absolutely no energy. Thx for all the support and i may benefit from a therapist, but wont know til i try. Just need to make an appointment i suppose. They just never seemed to help in the past.
05-03-2016, 08:01 AM   #13
Jakefriesz1
 
Join Date: Jan 2016
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What's up big boss. What pain meds are you taking? And dose? The opiates will make you feel better but they are no doubt going to cause a problem. I'm here to support but you have to make a choice in your life to be free of opiates and regain your health or wither away. Iv felt the same sometimes as I was addicted to opiates but you need to get off all of them. Ask your doctor about amitryptoline 25mg. It's anti depressant that will help you sleep and get of the pain pills and also works with pain and slowing your brain. Also try taking some natural things when getting off the opiates like SAMe, kratom, B5, CDB oil as well. I'm not a supporter of weed anymore cause I think it makes my nerves all whacked out. But CBD oil should be fine. Stay strong and keep fighting


05-03-2016, 08:09 AM   #14
ronroush7
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Yes about getting it off opiates

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