I will try to make a long story short, diagnosed IBS in 1995 after C-section with daughter, in 2008 diagnosed Ulcerative Colitis, tried lots of medications without reaching remission, received info from John Hopkins in regards to nicotine to reach remission, so I tried nicotine patches and ordered to stop due to rapid heart rate and passing out, so I started smoking cigarettes, and within 2 months reached full remission. I remained in remission until this Spring (2012), my mom died on Feb 22nd, and then my new born grandson died on May 1st, and I believe between the stress of all that I came out of remission, I went in and had a colonoscopy (#17), and this time there was no polups, no tumors, and no angianomas, so I was happy, until the biopsies came back and said "acute UC", and "crohns".. Now I'm confussed because smoking helps with UC, but is the worst thing fo Crohns... AND, the "Biologic" class of meds offered to me, (ie. Humara, Remicade, etc) all have shown a 68% to 70% chance of getting Lymphoma cancer within 2 years of using treatment, but refusing treatment shows Crohns could be fatal due to problems arising from the Crohns, (ie. super mega colon, ruptures, infection, etc.). I am so torn and scared. I am waiting to receive 3 books I ordered on line for UC and Crohns info, and even a recipe book for these diseases. I've been trying to figure out what I can and cannot eat or drink, and I'm struggling. the pain and cramps I get are so severe I just curl up and cry, the diarrhea is fierce, and the fevers come and go throughout the whole day everyday.. Any advice of what to do, or options for treatment that I'm not aware of? any that don't have such horrible risky side effects? My doctor is exhausted on giving me antibiotics, and prednisone.. Am I mssing something, or am I really doomed.. Also, I have had no weight loss through any of this, I only have problems with malnutrition and dehydration... No one ever seems to talk about that, only the weight loss.. Is that really rare for me to be like that? I'm 40 years old, and I feel like I'm 140 years old, the achiness and joint pain is unbearable sometimes.. Any advice or suggestions are appreciated.. Please and thank you in advance..
I'm so confused.
- Thread starter Sheryl72
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David
Co-Founder
Hi Sheryl and welcome! I'm glad you joined 
Yes, smoking is indeed supposed to help UC but be worse for Crohn's Disease. But CD can also go into spontaneous remission on occasion so maybe it was coincidental. That's certainly weird though.
Biologic medications DO NOT have a 68-70% of causing lymphoma. The risks are actually very low.
There are a variety of treatment options to be found in our treatment forum and subforums, some somewhat alternative in nature.
We're here for you anytime
Yes, smoking is indeed supposed to help UC but be worse for Crohn's Disease. But CD can also go into spontaneous remission on occasion so maybe it was coincidental. That's certainly weird though.
Biologic medications DO NOT have a 68-70% of causing lymphoma. The risks are actually very low.
There are a variety of treatment options to be found in our treatment forum and subforums, some somewhat alternative in nature.
We're here for you anytime
Angrybird
Moderator
Hello Sheryl and welcome to the forum, you have come to the right place for lots of helpful info and support What meds have been tried previously and were you ever put on a combo imstead of being given just the one med at a time (you will see from many of the signatures here that some heree are on more than one med to get things settled)?
Also are you any supplementation beings you have problems with malnutrition? If so what have you been put on?
Definetly check out the above mentioned forum as there will be plenty of info about the meds that have been mentioned to you and you can read about what people's experiences are of being on them.
AB
xx
What meds have been tried previously and were you ever put on a combo imstead of being given just the one med at a time (you will see from many of the signatures here that some heree are on more than one med to get things settled)? Also are you any supplementation beings you have problems with malnutrition? If so what have you been put on?
Definetly check out the above mentioned forum as there will be plenty of info about the meds that have been mentioned to you and you can read about what people's experiences are of being on them.
AB
xx
In reply to David and Angrybird, well, my mom only had 2 siblings and both died from cancer, 1 was colon, and the other was malignant melanoma, and my mom died this February from non hodgkins lymphoma, my father has 2 brother, 1 has colon cancer, and the other has prostate/bladder cancer, and the one has a daughter with colorectal cancer, so I know the odds are against me I guess and this all scares me a lot. In the past I was on Imuran, Flagyl, Asacol, Prednisone, Cipro, Metha..???? ( not sure how to spell), also ativan and some other antibiotic. On May 17th my colonoscopy said colitis and crohns, and the other day my GI specialist called and had me go in for a "special" lab, 2 tubes that had to be sent out to mayo and we are waiting for the results. This Friday the 8th I meet with the GI to discuss our next step and I am very scared.. I don't understand how I can have to severe cramps, pain, diarrhea, fevers, eye problems, dizziness, etc. etc. but I have never had any weight loss, with Pred I even gained some again. I'm not really heavy, about 20 lbs over weight I guess, (size 10), but I also don't have bleeding that often like most seem to. Makes me wonder why my symptoms are so non traditional?? The last 3 days I've been drinking lots of green tea and no fresh fruits or vegetables and it's bumming me out. I'm trying to figure out what I can and cannot eat and it's very difficult. In the past I've been in ER and the hospital with dehydration, get a few bags of IV fluids, and then start over. also in the past there were times I was drinking slimfast shakes, and ensure drinks (YUCK), and the Pedisure drinks fo kids indeed tasted the best, and I also drink gatorade periodically. I am unable to find a multi vitamin hat doesnt make me sick, and now I'm wondering if I should take probiotics??? I know I'm not alone, but I'm so scared. I really believe stress made me worse, with my mom dying in February, and my grandson dying in May, I've become a mess. I have bad days where I cry a lot, and then my stomach acts up even worse.. My husband is really supportive and he is the glue that keeps me to this earth, but a lot of my family members and friends almost seem to think I'm making it up or exageraiting, how sick I feel and get is unreal, and wouldn't wish it on anyone, but I wish they understood..
David
Co-Founder
Ugh, I'm so sorry to hear about your mom and other family members My heart goes out to your entire family.
Not everyone with Crohn's Disease loses weight. Some in fact end up overweight and see have quite a few threads where people are confused by that. All your other symptoms certainly correlate though.
Rather than blindly take a multivitamin, I would get your various vitamin and mineral levels tested to see which you are specifically deficient in and then supplement for them.
It's hard for people to understand what they don't experience themselves but I'm glad your husband is there to support you. It's understandable that you're scared, this can be scary
If you're still experiencing pain which causes you to ball up and cry and have that fever, your GI needs to get you in and see you immediately. If they can't, then a trip to the ER is warranted. You should not have to live like this.
*hugs*
My heart goes out to your entire family.Not everyone with Crohn's Disease loses weight. Some in fact end up overweight and see have quite a few threads where people are confused by that. All your other symptoms certainly correlate though.
Rather than blindly take a multivitamin, I would get your various vitamin and mineral levels tested to see which you are specifically deficient in and then supplement for them.
It's hard for people to understand what they don't experience themselves but I'm glad your husband is there to support you. It's understandable that you're scared, this can be scary
If you're still experiencing pain which causes you to ball up and cry and have that fever, your GI needs to get you in and see you immediately. If they can't, then a trip to the ER is warranted. You should not have to live like this.
*hugs*
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Sheryl72
I have a hard time keeping multi vitamins down, lately my greatest success are gummie pre-natels. I am starting the probiotics as well so not news yet but I'v heard a lot of great things about them plus they are natural so theyr safe! I have a lot of the same symptoms as you but not the fever(hot flashes and chills throughout the day tho) or diarrhea. And I rarely see blood as well. I used to loose a bunch of weight when I would get sick but right now my weight it actually a little higher then my average so I dont understand that either... And yes the stress will definitely make it worse, I get ulcers in my mouth from having it in my esophagus and when I become stressed I they increase more then double. I have played with my diet so much and I rarely find things that regular affect me the same so I cant decide what to cut out and I'v heard everything from "Go Vegan and all Organic" to 'Blend your food and drink it". (Neither of which work sense vegies hurt and I'm still in pain on a clear liquid diet).
I have a hard time keeping multi vitamins down, lately my greatest success are gummie pre-natels. I am starting the probiotics as well so not news yet but I'v heard a lot of great things about them plus they are natural so theyr safe! I have a lot of the same symptoms as you but not the fever(hot flashes and chills throughout the day tho) or diarrhea. And I rarely see blood as well. I used to loose a bunch of weight when I would get sick but right now my weight it actually a little higher then my average so I dont understand that either... And yes the stress will definitely make it worse, I get ulcers in my mouth from having it in my esophagus and when I become stressed I they increase more then double. I have played with my diet so much and I rarely find things that regular affect me the same so I cant decide what to cut out and I'v heard everything from "Go Vegan and all Organic" to 'Blend your food and drink it". (Neither of which work sense vegies hurt and I'm still in pain on a clear liquid diet).
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- Jun 2, 2012
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I am so sorry for your losses. That pain I can't even imagine what it is like. I have similar feelings in regards to the sickness, I have UC, and definitely feel like no one can understand.
Just wanted to let you know that I hope you feel better all around. I too curl up sometimes and wish I had someone next to me who knew the pain I was feeling. Having to avoid foods is the worst, I used to be known amongst my friends for eating the most (six courses at the dinning hall rawr) ! Now I can hardly eat at all. Green Tea definitely helps. Also, I know this is weird but ever since I heard honey helps, I eat it by the spoonful. It is just so delicious and sooothing. Try honey out, it helped me, if not physically then mentally. Eating it by the spoonful is yummmy, just brush extra after!
And if anyone ever thinks you are faking it, just know it is impossible for them to know how you are feeling so disregard what they say. Try not to let it get to you. I know how that feels and it hurts to have your friends think you fake it. Keep being strong you got this! :]
Just wanted to let you know that I hope you feel better all around. I too curl up sometimes and wish I had someone next to me who knew the pain I was feeling. Having to avoid foods is the worst, I used to be known amongst my friends for eating the most (six courses at the dinning hall rawr) ! Now I can hardly eat at all. Green Tea definitely helps. Also, I know this is weird but ever since I heard honey helps, I eat it by the spoonful. It is just so delicious and sooothing. Try honey out, it helped me, if not physically then mentally. Eating it by the spoonful is yummmy, just brush extra after!
And if anyone ever thinks you are faking it, just know it is impossible for them to know how you are feeling so disregard what they say. Try not to let it get to you. I know how that feels and it hurts to have your friends think you fake it. Keep being strong you got this! :]
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I too eat honey by the spoonfuls ha! Just bc it tastes great..
I had a dr tell me one time that Crohns disease wasnt real and it was all in my head (I was 12).So stay strong and dont let ppl get you down bc most of them are too stubborn and ignorant to even consider the idea that they are wrong!
I had a dr tell me one time that Crohns disease wasnt real and it was all in my head (I was 12).So stay strong and dont let ppl get you down bc most of them are too stubborn and ignorant to even consider the idea that they are wrong!
First I just want to thank you all for your kindness , support and advice. I feel blessed to have found this site. My daughter still has a bottle of gummie prenatal vitamins left from her recent pregnancy and I will try them. On Friday when I see my GI I will indeed ask him about checking my labs to see what I am lacking nutritionally. Since I joined this website, I have a sheet of questions to ask him at my appointment.. I myself worked in healthcare over 22 years, and I was always huge on patients being their own advocates in their care, and so now that I'm the patient, I too will be my own advocate, and I will do my best to educate myself so I can decide what is best for me. I can see it will be a long road.. God bless you all, I say an extra prayer for you all also. I will keep you posted. :ghug:
David
Co-Founder
Sounds great Sheryl!
:ghug:
:ghug:
Thank you.. I have an appt. with my GI at 8:45 am tomorrow, and I have list of questions written down to ask him, but I'm worried I'm missing questions, and I want to be prepared and cover all the bases because sometimes it takes forever to get an appointment with him... On the upside, since this is still new to me, this evening I discovered I can eat scrambled eggs and not get sick.. I ate at 7pm, and it's alreay 8pm, and I'm still feeling good.. "whoot-Whoot" In the last 2 weeks my GOOD food list is only Chex cereal, green tea, bananas, yogurt, and now eggs.... I'm determined to figure out what's best for me, and everyone on this site has been amazing.. Thank you ALL so much.. I'm discovering it's baby steps just one day at a time......:smile:
