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05-21-2018, 12:19 PM   #931
cmack
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Hang in there, Lynda. I know for me the uncertainty of things is hard to deal with, you have my support. Hugs.
05-21-2018, 12:31 PM   #932
GI Jane
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Hi! I'm new here but have been sick with Crohn for over ten years now.

I'm in desperate need of support because this is just getting way too much for me. This disease has ruined my life and now it appears I have a fistula from my bowel to my vag and it has propably been the cause for many problems for YEARS now. Sooo many infections and antibiotics.
I have been to a specialist to take a proper look but although my gastroenterologist sent me there, they didn't take it seriously and didn't even do it properly. I'm SO F*CKING MAD ABOUT THIS SH*T.
I don't have anyone to talk about this, I'm afraid my friends are just going to throw up on me if I tell them about this nasty sh*t. Please help, please just say something :''(
It's so important to vent and some friends will understand and some wont. The title waves of this disease bite for sure. There are times between the storms cling to those times and hold you through the rough times. Research everything, new treatments out there all of the time. I'm freaking about my trip to Europe and finding toilets and making sure I have the money and tp for the toilets at all times right now.
05-21-2018, 12:33 PM   #933
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Good luck in your travels, Jane. It's nice to see you around.
05-21-2018, 12:35 PM   #934
GI Jane
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I have been so stressed but just had my infusion of Vido early so it's helping already and get a week to get rid of the aches and tiredness from the infusion.
05-23-2018, 01:16 AM   #935
Lynda Lynda
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Right now I can only tolerate iquids, but once I get on board with this 6mp pill / Humira combo I am hoping I can start making smoothies again because I have this new Nutribullet "extractor." I get overwhelmed by reading about all these different kinds of diets and also the many supplements that people take. The only Vitamins I take right now are B12 and D3 because my doctors have told me to take them. I'm not interested in making my own yogurt or anything like that. And I am not sure I would feel comfortable taking a bunch of Vitamins without knowing if they can harm me instead of help me. My Insurance does not cover the cost of visits to a Dietician / Nutritionist and every doctor has their own opinions about supplements. This is getting to be too long of a post. Have a good evening. Lynda.
05-23-2018, 05:22 AM   #936
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Hope you feel better soon, Lynda.
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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.
05-23-2018, 11:27 PM   #937
MizzSarah
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Iím not just so fed up with crohns((Iím sure I have it far easier than most) but Iím just fed up in general. I wish life was kinder... I wish I know why god chooses for some people to have health issues and not others. I can try to tell myself on a regular basis that he has a purpose for everything but that doesnít always work. Itís definately not working right now.

I wish someone could just tell me whatís the purpose for all this suffering!
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05-23-2018, 11:31 PM   #938
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I don't know but you have my prayers and support.
Iím not just so fed up with crohns((Iím sure I have it far easier than most) but Iím just fed up in general. I wish life was kinder... I wish I know why god chooses for some people to have health issues and not others. I can try to tell myself on a regular basis that he has a purpose for everything but that doesnít always work. Itís definately not working right now.

I wish someone could just tell me whatís the purpose for all this suffering!
05-24-2018, 12:08 AM   #939
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I do really enjoy all you folks, so I guess something good came of my IBD. Also, I think it made me more mentally tough. I always try to look at the bright side, but it isn't easy. Nobody ever told me that my life was going to be easy though, so I just try to go with the flow. You have my support, MizzSarah. I think us tough ones seem to get the extra burden sometimes. I'm hoping you can catch a break soon, you deserve one.
05-24-2018, 12:23 AM   #940
Lynda Lynda
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Something good always seems to happen after something bad happens in my life ( at least the past 13 years. ) I have more understanding, compassion and empathy now.

My sister has RA and she will start infusion medication soon. Oddly enough I will start Humira injections for my newly diagnosed Crohn's. Both are inflammatory diseases. I have not told my sister about my diagnosis or treatment yet, I will wait until after my first loading dose of Humira. I think that this is something that could possibly bring us closer together.

Take Care. 🐥
05-26-2018, 10:43 AM   #941
GI Jane
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It will for sure Lynda. To be able to give each other ideas on what to do to help with pain or diet means a lot.
05-27-2018, 11:52 AM   #942
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Is the color pink bad when you go to the bathroom?
05-27-2018, 10:18 PM   #943
Lynda Lynda
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Is the color pink bad when you go to the bathroom?
Ron. I dont know. 😕
05-27-2018, 10:33 PM   #944
Lynda Lynda
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It will for sure Lynda. To be able to give each other ideas on what to do to help with pain or diet means a lot.
I have always been able to consume massive amounts of sugary food and still have an acceptable glucose level. Sugar had never bothered my digestive system, but healthy things like fruits and vegetables made me sick because of my UC ( so wierd, huh. ) Last year I was eating entire bags of marshmallows and stuff like Pop Tarts 😳

I was my healthiest in my early '30s. I was an ovo-lacto vegetarian then, bought all fresh food, shopped at a local food co-op, and lost weight. I walked every morning before work and rode my bicycle on weekends.

Damn that yellow watery diarrhea started when I was 37 years old. 😡 My gut has never been the same.
05-28-2018, 06:39 AM   #945
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Lynda, If I have any vegetables they have to be well cpoked. The only fruit I can eat are bananas.
05-28-2018, 06:36 PM   #946
cmack
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Is the color pink bad when you go to the bathroom?
I would call and have a message passed along to your GI regarding the pink you saw, Ron. I wouldn't panic though, I hope it resolves soon, and on it's own. I get slightly pink bowel movements from eating beets sometimes, so it's possible food contributed to the color.
05-29-2018, 06:24 PM   #947
Lynda Lynda
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I was on the phone with my Humira Nurse Ambassador today. Maybe it surprised her when I mentioned the Humira that is just coming to the USA. I learned that information here on this forum. All my reading here has not gone waste !! 🧐
05-31-2018, 07:03 PM   #948
Lynda Lynda
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Ok, I hope Jane is not sleeping in a hostel somewhere in Europe. She said her reservation had been canceled. I hope she gets to go through the "chunnel", an undersea tunnel between England and France.

🙂
06-03-2018, 03:40 AM   #949
Lynda Lynda
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I just read a post and the member used the word f**king.
Why not just be more appropriate and say sexual intercourse.
06-03-2018, 11:19 AM   #950
cmack
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Not sure, maybe they are having a bad day? There are certainly more intelligent words to use than that.
06-04-2018, 11:26 PM   #951
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Hi all Iím doing pretty good all things considered almost 5 months post surgeries my only real problem is the spasms where my rectum used to be which seem to be getting worse and Iím waiting for an appointment with a specialist.On the positive side I can pee almost completely normal now after my fistula & Bladder repair which is all kinds of awesome seeing my surgeons were convinced I was gonna need a bag to pee post surgery.
06-04-2018, 11:57 PM   #952
Lynda Lynda
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Tubes, I am so happy for you. 🐥
It is so nice to see results and feel better.
I hope your appointment with your specialist goes well.
Take Care. 🙂
06-05-2018, 12:15 AM   #953
Tubes
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Tubes, I am so happy for you. 🐥
It is so nice to see results and feel better.
I hope your appointment with your specialist goes well.
Take Care. 🙂
Thanks itís encouraging when things actually get better itís a slow process and Iíve been dealing with these issues for more than a year but all my doctors are extremely pleased with my progress so far.As for the specialist heís booked solid so Iím on a wait list but It anybody cancels I could get an appointment at anytime.
06-05-2018, 10:47 AM   #954
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Hey Tubes! Good to see you around. I'm glad things are coming along so well for you. Cheers to that!
06-09-2018, 04:26 PM   #955
Lynda Lynda
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..💕..

Last edited by Lynda Lynda; 06-09-2018 at 11:30 PM.
06-16-2018, 10:49 PM   #956
Tubes
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Went to my Colorectal surgeron for an appointment yesterday everything went well but they want me to go to the support group their restarting again next month because Iím so overwhelmingly awesome(not his exact words but itís what he wanted to say I could see it in his eyes and the eyes much like my hips donít lie) and positive even though Iíve been dealing with this crap since I was 10,had more than a dozen surgeries and pretty much every side effect and complication imaginable.He told me heís got a ton of patients that have never had surgery and their symptoms are easily managed by watching what they eat and taking their meds and all they do is complain and are mostly unpleasant all around while Iím a ray of sunshine on a cloudy day and heís hoping my awesomeness rubs off on them and they realize they donít have it so bad but Iíve tried these support groups a few times and they were just awful as Iím not a fan of being around nasty people.
06-17-2018, 08:42 AM   #957
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I wouldn't want to hang around nasty people either. I hope you get a better experience this time round with a new group. I'm happy to hear that you are feeling good, cheers to your awesomeness!
06-18-2018, 08:18 PM   #958
Lynda Lynda
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Define "nasty people"

🤔
06-18-2018, 09:29 PM   #959
Tubes
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Define "nasty people"

🤔
Mean,unpleasant,combative people looking to fight and argue instead of helping eachother the whole point of a illness specific support group or just support groups in general in my opinion is get people that are going through similar things and to help & support eachother not bring stress and a negative atmosphere.
06-18-2018, 09:59 PM   #960
Lynda Lynda
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Thanks. 🙂
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