- Joined
- Sep 18, 2013
- Messages
- 9
I am hoping someone could help me figure out what in heaven’s sake is going on. I am at my wits end with this Crohns disease and trying to figure out what it’s doing to my body.
I started Humira last April, one month after being dx’d after being hospitalized with a bowel obstruction. It appeared Humira was not strong enough, once tapering to 15 mg of Prednisone, again hospitalized for bowel obstruction. Imuran added, Prednisone bumped back up. After adding the Imuran, I began having just partial obstructions, most I was able to clear at home by remaining NPO for a day or so, but they would wax and wane. Essentially ended up having surgery, after having a reaction to Imuran. I had a nasty bout of vomiting and some nasty relentless nausea with it.
I had 25.5 cm of terminal ileum removed, ileocecal valve with appendectomy (adhesions) and 6.5 cm of colon removed. Recovery was slow, probably r/t all the drugs as I had no real break between the triple immunotherapy and surgery. Initially had 15+ episodes of bile acid diarrhea for about 3 weeks, was given Questran. Worked well, even with very small doses. After about a month of use, horrendous nausea and I felt like my meals would just sit in the pit of my stomach for hours. Stopped the Questran, magically diarrhea did not return to the pre-Questran amount and nausea greatly subsided. But oddly, nausea returned a little bit later. I have since been eating Zofran like candy.
Restarted Humira after a 6 week break to allow for healing post-surgery. Each time I inject within a day or so, horrendous nausea, increased diarrhea and migrating “arthralgia’s”. I just feel like total crapola! I have lost 13 lbs in about 3 weeks. I have never lost weight like this. This was not a problem with Humira before, other than occasional joint pain, usually to knees bilaterally. I did go off the Humira after I restarted for about three weeks after getting a nasty cold with fever. I did not intend on going that long without it, but I realized I felt better, no nausea, energy and generally felt normal. I convinced myself it was coincidental and if I wanted to stay like this, I had better take my Humira. I did.
Like clockwork, unrelentless nausea, not really relieved by meds, food, typical remedies, increased diarrhea and feeling really yuck. I stopped it again for another couple weeks. Symptoms disappeared. I injected and same result as before. I let my GI know and we have decided to stop the Humira and go for about 3 months, med free with the possibility of starting Cimzia in June.
I don’t know which I should hate, the drugs or the Crohns. I don’t want to go untreated, but if the meds make me feel this way, I can’t do it. The Crohns before diagnosis caused a lot of pain, but over the years I became pretty accustomed to it. I NEVER had nausea until I was diagnosed and would wait too long to get treatment with the bowel obstructions. Once the pain was controlled, I was fine. Nausea and/or vomiting is torture to me. I can handle pain, diarrhea, joint pain, etc, etc, etc….I have reached my limits with the nausea. It’s the one symptom I can’t hide from people. I am pretty private about my disease. I work full time and the last worry I need is my employer thinking I am liability and I need my job and income. Otherwise I would be homeless and uninsured. I need to get myself straight and I don’t know how too and my GI isn’t really being aggressive enough in his investigatory efforts.
I started Humira last April, one month after being dx’d after being hospitalized with a bowel obstruction. It appeared Humira was not strong enough, once tapering to 15 mg of Prednisone, again hospitalized for bowel obstruction. Imuran added, Prednisone bumped back up. After adding the Imuran, I began having just partial obstructions, most I was able to clear at home by remaining NPO for a day or so, but they would wax and wane. Essentially ended up having surgery, after having a reaction to Imuran. I had a nasty bout of vomiting and some nasty relentless nausea with it.
I had 25.5 cm of terminal ileum removed, ileocecal valve with appendectomy (adhesions) and 6.5 cm of colon removed. Recovery was slow, probably r/t all the drugs as I had no real break between the triple immunotherapy and surgery. Initially had 15+ episodes of bile acid diarrhea for about 3 weeks, was given Questran. Worked well, even with very small doses. After about a month of use, horrendous nausea and I felt like my meals would just sit in the pit of my stomach for hours. Stopped the Questran, magically diarrhea did not return to the pre-Questran amount and nausea greatly subsided. But oddly, nausea returned a little bit later. I have since been eating Zofran like candy.
Restarted Humira after a 6 week break to allow for healing post-surgery. Each time I inject within a day or so, horrendous nausea, increased diarrhea and migrating “arthralgia’s”. I just feel like total crapola! I have lost 13 lbs in about 3 weeks. I have never lost weight like this. This was not a problem with Humira before, other than occasional joint pain, usually to knees bilaterally. I did go off the Humira after I restarted for about three weeks after getting a nasty cold with fever. I did not intend on going that long without it, but I realized I felt better, no nausea, energy and generally felt normal. I convinced myself it was coincidental and if I wanted to stay like this, I had better take my Humira. I did.
Like clockwork, unrelentless nausea, not really relieved by meds, food, typical remedies, increased diarrhea and feeling really yuck. I stopped it again for another couple weeks. Symptoms disappeared. I injected and same result as before. I let my GI know and we have decided to stop the Humira and go for about 3 months, med free with the possibility of starting Cimzia in June.
I don’t know which I should hate, the drugs or the Crohns. I don’t want to go untreated, but if the meds make me feel this way, I can’t do it. The Crohns before diagnosis caused a lot of pain, but over the years I became pretty accustomed to it. I NEVER had nausea until I was diagnosed and would wait too long to get treatment with the bowel obstructions. Once the pain was controlled, I was fine. Nausea and/or vomiting is torture to me. I can handle pain, diarrhea, joint pain, etc, etc, etc….I have reached my limits with the nausea. It’s the one symptom I can’t hide from people. I am pretty private about my disease. I work full time and the last worry I need is my employer thinking I am liability and I need my job and income. Otherwise I would be homeless and uninsured. I need to get myself straight and I don’t know how too and my GI isn’t really being aggressive enough in his investigatory efforts.
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