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Crohn's Disease Forum » Support Forum » Vent Away » Medical treatment burnout


04-09-2017, 12:22 PM   #1
Tuff
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Medical treatment burnout

I've had Crohn's now for over six years. In the first year, I spent 5 months in hospital with an abscess. After 4 months, I tried to slit my wrists. (First time in hospital, ever) Then they suddenly started paying attention to me. After I got home, I got peripheral neuropathy from Flagyl and used a cane for over a year. Then the side effects from prednisone I don't even want to remember. This January, I finally got off Imuran after having 9 colds last year, strep throat, oral trush and 3 yeast infections. Last November I got peripheral neuropathy from Remicade, but my gastro guy didn't believe me. My last infusion in March, it got worse and the numbness went up my shins, and into my hands. My gastro is so busy, that I can't get in to see him (other than my 6 mo. appointment) without a new referral. WTF? So I wrote him a letter telling him what happened, and that I need to get on a different med. I know I need to be on something, but I"m so done with the side effects of these poisons. I'm pretty much in remission right now, and terrified of what new horrible drug he's going to put me on.
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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.
04-09-2017, 12:52 PM   #2
ronroush7
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Hi. I am so sorry of what the meds have done to you. I think you might need a second opinion.

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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.
04-09-2017, 03:41 PM   #3
Tuff
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Looking at your sig, you've been through the wringer too. I feel better now that I got that out. To get a second opinion, I'd have to get a referral from my GP that would probably take 6+ months.
04-09-2017, 05:02 PM   #4
Sophabulous
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I know it's no immediate help, but I think it's worth signing up for a second opinion and asking to be contacted in the event of a cancellation.

A good Dr can make this so much easier in my experience. My GP is wonderful although having the same issues with GI department at the hospital myself. I hope you get some relief soon x
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
04-10-2017, 10:13 AM   #5
Bufford
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A second opinion is needed. Being in remission you could seek advice from a naturalpath; those who specialize in natural remedies. Some of these work better than others as we are all different. If the chemical treatments make you sick, alternatives are worth checking out.
04-10-2017, 04:19 PM   #6
Tuff
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I googled the local GI's, and it sounds like mine is leaving anyway. There is a GI here from India, from the sound of his name, who believes in diet, no red meat, lifestyle changes, etc. He sounds like the perfect doctor for me. I'm going to wait to hear from my GI, and ask for a referral to this guy. Some people don't like him, because he tells them they're fat and shouldn't drink coffee, smoke etc. I think all that is necessary to stay in remission.
04-10-2017, 04:53 PM   #7
GI Jane
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Sorry to hear about the doctor hasel what a pain. Ya Remicade gave me lupis which was rare too. Envivio seems to be working though now. So on Friday when they remove the diseased terminal ileum they think I could go into remission. Here's hoping. I actually did real well with a strict diet for a few years. Book was by Jordan Rubin called Makers Diet I think. Worth a shot, think they carry it in the library now.
04-11-2017, 04:19 PM   #8
Tuff
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I hope all goes well on Friday for you. From what I've read, it could put you in remission for a long while.
04-14-2017, 04:17 PM   #9
MizzSarah
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I'm medically burnout too. I see no reason to go to doctors now because I have been used as a guinea pig for far too long this year I've seen lung, ENT, allergists and others to simply get an clear for doctors to prescribe me with antibiotics for longer than a week if need be. I'm got no reason other then Meds and being around environments that's causing me to get frequent infections. I go to the doctors today after suffering from being sick for 2 and a half weeks without any natural thing to work and I leave without any prescription in hand. There's pus in the back of my throat. My throat is red. My right tonsil is swollen. I'm coughing. There's all sorts of plem. Clearly a bacterial infection which they acknowledge but I'm left with a 'you can fight this' words of encouragement. If I could fight this---would I be there?


Humira + working in schools +Crohn's have done a number on my body but all I need is something---anything to help. They offered me nothing.😩
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04-14-2017, 04:39 PM   #10
ronroush7
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I am sorry, Sarah.

04-14-2017, 07:44 PM   #11
Tuff
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MizzSarah I'm sorry that they're not doing anything to help. Maybe if you're feeling really sick, you could go to the ER. They took me way more seriously in there. I find that when I catch something, it takes a lot longer to get rid of, and I get really tired fighting it off. I was on antibiotics several times last year, but don't want to do that too often either. Hope you feel better soon.
04-14-2017, 11:56 PM   #12
MizzSarah
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Going to the ER just might be the only option though I hate going--since it's not a medical emergency. Pretty sure I might be on the brink of developing pneumonia again. Had it this time last year😑

Seems rather pointless for me to go to doctors anymore. I've become quite a frequent patient which I hate to admit. Currently on Humira..in supposed remission(don't believe it) I tried to mention to my GI that I keep getting sick but he doesn't want to risk taking me off something that's working.


Anyone out there in a similar boat? Taking vitamins like their gummies. All my levels are checking out nicely yet always sick. Can't help but feel defeated when every holistic approach I've tried keeps failing.

MizzSarah I'm sorry that they're not doing anything to help. Maybe if you're feeling really sick, you could go to the ER. They took me way more seriously in there. I find that when I catch something, it takes a lot longer to get rid of, and I get really tired fighting it off. I was on antibiotics several times last year, but don't want to do that too often either. Hope you feel better soon.
04-15-2017, 12:00 AM   #13
ronroush7
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Sarah, you know your body better than anyone else

04-25-2017, 11:31 AM   #14
GI Jane
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Thoughts and prayers. Do you supplement with anything like ensure to keep protein levels up. I take a few sips with my meds throughout the day since i don't care to drink all at once. Hugs.
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